Category: Chronic fatigue syndrome (CFS)

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Why Does Our Culture React So Negatively to Disability Activism?

Why does our culture react so negatively to disability activism?

Disclaimer: This article is written from my perspective as a young, disabled adult that lives in New Zealand. Whenever I mention “culture” in this article I am referring to western culture, specifically western culture as adapted to by New Zealand. I haven’t done much traveling so I can’t say if other countries with similar cultures react the same way, however, I have seen accounts of similar experiences from activists worldwide. 

This is also my experience as someone with an invisible disability. I’m sure that everyone’s experience is different, and some of the readers of this article may not relate to what I have written no matter where they live. This is awesome because we all have our own unique story. I make a lot of generalisations in this article, and those generalisations certainly don’t apply to everyone. I am just expressing my experience in the best way I can.

I have experienced widespread chronic pain since the age of seven. I went from being a relatively “normal” (if accident-prone) girl to experiencing severe pain every day of my life. Slowly my condition deteriorated until I required the use of walking aids for a large chunk of my life (and I still do). I went through years of bullying and what I can only consider being “medical abuse” (mistreatment from medical professionals; such as being called a faker and being forced to take medication that caused severe side effects), which almost broke me.

As I grew into my voice I decided that I would be an advocate; not only for myself but for everyone with similar experiences to mine. I started with the basics: social media. Whenever I noticed an injustice towards people with disabilities, whether it be against me directly or against someone else, I would speak out. I then started writing articles about my experiences, which I love. And now, I’m a part of a panel run by the local Ministry of Education aimed at making education more inclusive to disabled students. This is just the beginning of my advocacy journey, and I can’t wait to see where it leads me in the future.

My advocacy journey on social media

Throughout my advocacy efforts, I have noticed that many people on social media bristle when advocates like me bring up serious issues addressing the disabled community. I have been dismissed, insulted, and verbally abused online by people who will do anything to defend injustices against vulnerable people. I decided recently that I wanted to analyse their viewpoint and understand why, so I thought the perfect way to do this would be to write out my analysis and my thoughts in article format so I can share it with you all. This article addresses the question featured in the title: Why does our culture react so negatively to disability activism?

Ableist preconceptions that exist culturally regarding disability:

When we take a deep look at how the topic of disabilities is covered in the media, it is actually quite shocking. For example, I have an issue with the tv show called “The Undateables”, which is a dating show about people with disabilities finding love. While I believe that disabled people (including myself) should have the opportunity to find love just like everyone else and appreciate the representation this show provides, I don’t support that show because of the title’s connotation and denotation. Using the term “undateable” to describe an entire group of people is downright insulting. You’d never see a media organisation calling someone who’s from any other minority group (but who is not disabled) “undateable”. 

I am not “undateable”. My brothers are not “undateable”. My friends are not “undateable”. No person should be labelled “undateable” for something they can not control. This is just one example of society’s ingrained ableism that many people are blind to.

We’re to be pitied, but not listened to. This is another ableist preconception I’ve witnessed. Often disabled people are portrayed to be these pitied, helpless beings who need charity, not a voice. We must be passive to maintain this image otherwise we are labelled as “trolls” or “entitled”. I’ve been told that if I can walk and/or articulate then I’m not disabled enough to complain about facing injustices. That is so incredibly wrong, especially since if people like us who can speak up don’t, then who will? 

Ableist preconceptions that exist culturally regarding disability

I’ve also been told that I should stop using my disability “as my personality” when I responded to a post on social media. Actually, I’ve been told this multiple times. That is one of the most ableist things I have heard to date. I’m sorry that I can’t “turn off” my disability. I experience pain every single second of my life. It impacts my ability to sleep, my ability to sit, my ability to stand, my ability to walk, my ability to work, my ability to study, and my ability to socialise. Am I supposed to forget that? Not only that, but why shouldn’t I fight for injustices against people with disabilities to end?

Invisible disabilities make people uncomfortable:

Many people feel like they have to see something to believe it, which is fine until you start talking about invisible illnesses and disabilities. If I’m not using my cane, you couldn’t tell I’m disabled just by looking at me. And yet, my disability impacts all aspects of my life, whether I’m using my cane or not. Many times I have had people accuse me of faking my disability on my activism posts, telling me that I don’t “look” disabled and that I’m just “lazy”. I’ve had to grow up listening to this from my peers throughout my childhood so it doesn’t bother me as much as it used to. I’ve become desensitised. However, this behaviour needs to be addressed, because next time it could be said to someone who is not experienced dealing with this kind of harassment.

The disability rights movement isn’t as “trendy” as other human rights movements:

This point may be a bit controversial, however, I think it’s important to talk about. As a disclaimer, I’m not trying to tear other movements down to lift up disability awareness, I am simply comparing current cultural awareness and coverage of different movements in the mainstream media. I am not trying to say that either of the movements I compare disability activism to below deserve less attention, because I believe they deserve all the coverage they are getting, if not more. I also believe that the disability awareness movement should have just as much coverage as these movements so that they’re all at an equal platform.

LGBTQIA+ pride, for example. We have pride parades and Pride Month, events dedicated to raising awareness about discrimination against people within the LGBTQIA+ community, and LGBTQIA+ merchandise specifically aimed at raising awareness and money for charities that support this goal, which is a great cause. Companies change their logos or advertising media to reflect these events to show their solidarity, which is amazing. There are even multiple public spaces in my country that have been painted rainbow to celebrate Pride, such as town squares and selected zebra crossings. Feminism is another example. We have the women’s march, international women’s day, feminist merchandise, and a tonne of events targeted at raising awareness about discrimination against women. Both of these movements are prominent in pop culture and get a large amount of media coverage, as they should. 

The disability rights movement isn't as "trendy" as other human rights movements

I just wish we could see the same effort go into raising awareness about discrimination against people within the disability community, as well as a similar amount of media coverage of these efforts. Where are the disability awareness parades? In my country, there are none. There are disability awareness days, however, I have yet to see the mainstream media address them. The inequities of identity awareness in our culture is definitely an interesting topic to think about.

Disability activism is not “convenient”

Part of disability activism is confronting people who are taking advantage of disabled people just to make their own lives more convenient. For example, calling out people who park in disabled parks without a permit, or sharing public service announcements about misuse of disabled toilets. When I mention the misuse of disabled toilets, I don’t mean them being used by someone with an invisible disability. People with invisible disabilities have as much right to use the disabled toilet as every other disabled person. When I mention the misuse of disabled toilets I’m talking about the people who have no impairment what-so-ever (or aren’t assisting someone with an impairment) who just use the disabled toilet just because it’s there. 

I have witnessed people without disability parking permits parking in disability parking many times. When called out on it, their response is often “I’ll just be a few minutes.” That is one of the most common responses, along with resorting to verbal abuse when someone mentions their lack of a permit. I have made posts about these occurrences on my town bulletin Facebook pages, and every single time I have received abuse from people who see no issue with parking in one of these parks without a permit. I get told that I’m entitled, even though I paid for my permit to use those parks, while the abusers that park there don’t. How am I entitled for asking to use a service that I pay for?

Privileged people who lack empathy don’t like having their privileges, even the privileges that aren’t rightfully theirs to begin with, taken away.

There’s also the issue of inaccessible public spaces or stores. Renovating an area to ensure it is accessible by everyone may not be cheap, but it is necessary. Calling out local businesses that exclude disabled people from their stores and spaces is extremely important.

Disability activism is not “convenient” especially when it addresses the misuse of disability parking and disability toilets

During my advocacy journey (despite it being a short one at this point, I only started about 4 years ago) I have faced a lot of feedback. Some of it good, some of it bad, most of it respectful. However, I have also faced a lot of abuse, mostly online, for standing up for what I believe in. Sometimes, for a brief moment, I consider giving up, but then I remember the people that have thanked me for speaking out. This article is dedicated to them. I long for a day when disability activism is no longer controversial, and people no longer have to fight for their voices to be heard.

Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.

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Hyperhidrosis and The Realities of Living with Excessive Sweating

Living with hyperhidrosis can be challenging. The contents of this article may seem like too much personal information about bodily functions for some people, however, I feel that hyperhidrosis is something that is not talked about a lot in the chronic illness community. We need to delve into the TMI (too much information) realm to discuss it.

I used to think that I was a gross freak of nature for sweating so much, but after connecting with other people who experience a similar thing I realized that it is more common than I thought.

hyperhidrosis

What is hyperhidrosis?

Hyperhidrosis is abnormally excessive sweating that is not always related to heat or exercise. Someone with hyperhidrosis may sweat so much that it soaks their clothes and drips down their face and hands. People normally sweat when they exercise, are hot, are anxious or under stress. The sweat that accompanies hyperhidrosis far exceeds this normal level of sweating. Hyperhidrosis can also be made worse by factors such as heat, exercise, sweat, stress or anxiety.

Primary Focal (Essential) Hyperhidrosis

The most common form of hyperhidrosis is primary focal (essential) hyperhidrosis. This occurs when the nerves responsible for signalling your sweat glands malfunction and become overactive. This type of hyperhidrosis usually affects the palms of your hands, the soles of your feet, and in some cases your face. There is no determined cause for this type of hyperhidrosis, however, it may be hereditary as it runs in families.

Secondary Hyperhidrosis

Secondary hyperhidrosis occurs when it is a symptom of another medical issue. It is more likely to cause widespread excessive sweating than primary hyperhidrosis. Conditions that may result in excessive sweating can include:

  • Thyroid issues
  • Diabetes
  • Infections
  • Some types of cancer
  • Heart issues
  • Nervous system disorders

Some medications can also cause excessive sweating.

Experiencing Fibromyalgia with Hyperhidrosis

My secondary hyperhidrosis is caused by my severe fibromyalgia, which is a central nervous system disorder. While some of the medications can cause secondary hyperhidrosis, my experiences with excessive sweating began in childhood, long before I started taking these specific medications, but after I started suffering from chronic pain.

Of course, weight can impact how much you sweat, and I am overweight. However, as said above, I have been experiencing this excessive sweating since before I was even a teenager, and I weighed nothing close then to what I weigh now.

How Hyperhidrosis Impacts Social Situations

Work: If your job is in any way stressful and you deal with hyperhidrosis, you may find you sweat a lot at work. If you work around others, such as in a customer relations role or in the office, the excess sweating may make you anxious about how others may perceive you. This anxiety may impact your productivity if it becomes severe. Hyperhidrosis may also impact your opportunity of gaining new employment if it becomes problematic during job interviews. Since sweating is usually a sign of anxiety, even the calmest person with hyperhidrosis may look extremely anxious to the interviewer. This could have a severe impact as to whether you are chosen for the job. Shaking hands can also be a source of anxiety particularly if you have primary focal hyperhidrosis which causes sweaty palms.

Night clubs: As a young adult, every once in awhile I like to go to a night club and dance with my friends. Even though I find this extremely draining, I like to experience just a few hours of normality. Many nightclubs are crowded and warm. Hello Extreme Flare! It can be difficult to enjoy myself knowing that I have sweat visibly dripping down my face. This can also impact my chances of meeting new people and starting new relationships. , The excessive sweating may cause people to judge me before they get to know me. This is definitely a disadvantage for the single girl like me.

Any social occasion: Hyperhidrosis can impact any situation. Going to a café, a theme park, the beach, the movies and attending school are all different for a person that has to consider excessive sweat. Hyperhidrosis and extra sweating can become a source of anxiety at any time, but when it’s flaring especially when it’s flaring.

Tips and Tricks for Coping With Hyperhidrosis and Excessive Sweating

Now that I’ve listed the ways hyperhidrosis may negatively impact social situations, I will now tell you my tips and tricks for coping with hyperhidrosis and living with excessive sweating that I have developed throughout my own experience.

Waterproof Makeup

The facial sweating that is the result if hyperhidrosis can ruin any makeup you may be wearing. I personally love wearing makeup every once in a while for nights out or on a day I feel like dressing up. Unfortunately, if I’m not careful with what products I use my makeup can end up dripping down my face. Utilizing a good primer and a waterproof foundation and concealer are a good start. Make sure your mascara and eyeliner is waterproof if you enjoy using those products. You can even find inexpensive brands at your local retailer and online. Many brands meet these suggestions.

Dressing in Light Layers

Very many people live in a place where the weather can go from cold to hot within a few hours. Dressing in light layers is the way to go. If you also suffer from temperature control issues spring layering is good strategy for you, too. Utilize cardigans because not only are they light but they also don’t take up too much room in a bag while out and about. If it is chilly in the morning wear a t-shirt and a cardigan over top. It is easy to take take it off later on in the day.

Portable Fans

hyperhidrosis

This may seem a bit extreme, but if you’re prone to over-heating on a regular basis like I am, a portable fan can be invaluable. I got one for $8 from The Warehouse, and I love it. It’s rechargeable by USB and has multiple levels of intensity. This would be perfect for days at university during summer, long days of traveling, or days when you’re spending a lot of time outside in the heat.

Apply Multiple Layers of Antiperspirant

With secondary hyperhidrosis the sweat under your arms can become excessive and can be very hard to manage. Recently I have started using multiple layers of antiperspirant using two different types and I find this helps well for summer. I use a cream antiperspirant under my arms first and then a spray antiperspirant on top. While this does not completely stop underarm hyperhidrosis it does make it more manageable. There are some more aggressive options you may discuss with your health provider in some places.

Body Wipes and Shower-less Body Wash

If you have hyperhidrosis and live with excessive sweating in addition to chronic illness then managing your hygiene can be very difficult. Bathing, for example, can be very difficult for those who experience symptoms such as chronic pain and fatigue. Some days many Chargie’s do not have the energy to shower. Other days I may end up perspiring a lot requiring multiple showers. In these cases it is convenient to use deodorant body wipes or shower-less body wash. Deodorant wipes are targeted especially at lessening odor. Shower-less body wash can be used without washing it off and do the same thing. 

Many people like to use baby wipes in the place of deodorant body wipes. I find that baby wipes don’t work very well in comparison. Products specifically targeted at killing sweat caused germs and odor do a much better job, and I find that body wipes are more moist with product, therefore you end up using less wipes.

When you experience hyperhidrosis and living with excessive sweating it can feel very isolating. However, there are things you can do that make coping with it a bit easier. It was also helpful for me to learn that isn’t something that I go through alone. Surrounding yourself will people who understand your condition can also make a huge difference. Having a non-judgmental environment can become your social safe space. I know that when I start sweating excessively my close friends won’t judge me for it. Therefore I never become anxious about it around them.

Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.

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It’s Only One Day, (But You’re a Superhero!!)

Thinking about things like upcoming holiday gatherings with large crowds of people can bring on anxiety for people who don’t even usually have anxiety issues.  Face it, the holidays are stressful. When you have bowel troubles, being in crowds, coupled with food to which you simply cannot say no, and a sketchy or unknown bathroom situation can make the already “standard level anxiety” explode into a world of unknown possibilities that would make Willy Wonka’s world of pure imagination seem dull.  I spend the holidays with Crohn’s disease and anxiety together, and it always makes me wonder if I am on Santa’s naughty list. I seriously wish I would just get a lump of coal instead.

I spend the holidays with Crohn's disease and anxiety together, and it always makes me wonder if I am on Santa's naughty list. I seriously wish I would just get a lump of coal instead. 

Christmas Before Chrohn’s Disease

When I was a little girl, we always spent the holidays at my grandparents’ house.  It was a huge, old, three-story home, complete with a creepy basement. There were lots of wooden pillars between each room and a beautiful wood and marble tiled hearth, with a mirror around the fireplace.  The stairway was located down the hallway between the family and living rooms. The stairway “secret passageway”, as I remember calling it, mysteriously somehow led into the kitchen, the basement, and the upstairs area where the bedrooms were, all behind the same magical door.

The bathroom was upstairs, also.  The one bathroom.  The one bathroom in the whole great big house.  The one bathroom that all of us, and there were over fifty people, had to use when we gathered for the holidays at Grandma and Grandpa’s house.  There was even a little couch on the landing area just up the stairs that sat outside the bathroom, because you were inevitably going to have to wait for it to be your turn. As a child, this didn’t bother me at all.  I used the time to explore the upstairs bedrooms and look around at all of the things I wasn’t allowed to touch.  I was particularly interested in my Grandpa’s ship in a bottle – I still don’t know how that thing got in there!!

Crohn's Disease child adult focus chronic illnes holiday strategies

Christmas with Crohn’s Disease

Now, if I had to go to a one bathroom house for any kind of get together, I would panic.  There is no way I would be able to negotiate any kind of celebration with that many people and only one bathroom. Even if there is a super comfy couch to sit on and wait my turn. Because of Crohn’s disease, I can’t wait.  When I have to go, I have to go immediately. And the thought of just being somewhere that I don’t have immediate access to restroom facilities creates a level of anxiety that freezes me in my tracks and keeps me from doing so many of the things I want to do.  Even if the people are family and understand my situation, it doesn’t make the anxiety stop – not even a little bit. It does make me wish I just got a lump of coal instead, though.

Holidays & Social Anxiety

The feelings of “what if this,” or “what if that,” happens regarding my bowel issues are one thing – and a horrifying thing at that.  But then there is the social anxiety that I have to contend with on top of bathroom anxiety. I don’t like large crowds. I don’t like loud noises, especially sudden or startling noises.  I don’t like to hear small children or babies crying uncontrollably. It is very difficult for me to make small talk, even if it is with people I know and genuinely enjoy being around. It’s actually terrifying for me.  And I cannot explain what it is, or why it is, in any way that makes sense to someone who has never felt this way. It’s just emotionally and physically painful. I always try to fend off these feelings with humor and sarcasm, laughing so I don’t appear so uncomfortable. But deep down, I’m in very real agony. I’ll take that lump of coal now instead, please.

Crohn's Disease social anxiety family stress Holiday strategy

A lot of people say they get it. I often hear, “I understand, I don’t like crowds either,” “I don’t like loud noises,” or “The screaming kids get on my nerves too.”  No, that’s not exactly it, but I appreciate the sentiment – sort of. Other times I’m met with a downright denial of my feelings altogether, “It’s just one day, you can get through it.”  I honestly wish it were that easy.

Anxiety around the holidays for me is two-fold because not only do I fight with the anxiety of being around a lot of people, I am also fighting the fears about the bathroom situation at any given time.  It’s been years since we all gathered in the one bathroom home of my Grandparents. My family gets together now in places with multiple bathrooms, which helps ease that problem just a little, but bathroom anxiety never truly goes away when you have bowel problems.  

Well-meaning Relatives…

There is always that kid that pounds on the bathroom door even though they just saw you go in there. There is always that super overly concerned, but well-meaning relative that asks you if you are okay all three times they see you come out of the bathroom. There is the other relative who automatically knows how you feel and tries to empathize with you because they have a lactose issue or a spastic colon. So they have to make a huge deal about how alike the two of you are – usually loudly and in front of everyone – doling out the same ridiculous advice they give you every year that is sure to “cure” all your problems.  And then there is the jokester, who tries to make fun of you going to the bathroom again and again. Even though they are trying to be funny to make you feel less self-conscious, they always end up making you feel worse. But hey, it’s only one day. It takes several weeks to mentally prepare and four days to recover from that one day, but, it’s only one day. Lump. Of. Coal. Please

There is always that super overly concerned, but well-meaning relative that asks you if you are okay all three times they see you come out of the bathroom.

Not Just One Day

For me, and so many like me with anxiety, it isn’t just one day.  It isn’t just one hour. It isn’t just sucking it up and doing something you don’t want to do like emptying the cat litter or getting that pesky flu shot.  It is literally all the days leading up to that one day. It’s the fret and worrying and concern and overthinking that is involved in mentally trying to prepare for every possible scenario that might occur in that one day. It’s also knowing you will never be fully prepared enough, so you start freaking out about that.  Then it’s the actual event itself, which is almost never as bad as it seemed like it was going to be all the days, weeks, or sometimes months before that you worried about it. Except, even knowing that doesn’t ever stop the pre-worry. It doesn’t end there, though.

For me, and so many like me with anxiety, it isn't just one day. It isn't just one hour. It isn't just sucking it up and doing something you don't want to do like emptying the cat litter or getting that pesky flu shot. It is literally all the days leading up to that one day.

It’s also all the days after the events suffering from extreme exhaustion and the need to come down from the high levels of stress and anxiety and all the interactions with other people.  The physical fatigue and genuine body pain from having to endure such a distressing ordeal, coupled with the havoc that it all wreaked in my gut, puts me out for days afterward – even if it is just having dinner with my family at Christmas. It’s all of those days and it’s exhausting. I feel that anyone who has to deal with chronic illness in any form, on top of the normal holiday stress, deserves superhero status and a sweet cape.

I feel that anyone who has to deal with chronic illness in any form, on top of the normal holiday stress, deserves superhero status and a sweet cape.

It’s not about not wanting to be around my family.  I desperately want to be around them because I rarely see them.  I desperately want to spend time laughing and eating and having a good time enjoying the holidays, or any other celebration, without a care or second thought about anything – just like I did at my grandparents’ house when I was little.  But now, anxiety happens. I can do my best to control it, I can take my medication, I can do my self-care, and I can be funny and pretend I’m okay. But the bottom line is the anxiety is still there. The irrational fear is still there.  The “what if’s” are still there. I get that, technically, it is just one day – except it isn’t. I do understand what is happening. I even have insight into how illogical it is. That doesn’t make it stop, though. I wish it were as simple as being able to tell myself that it’s just one day and I’ll get through it.  Seriously, where is that lump of coal instead?

This, my friends, is what makes people with chronic illnesses so very special.  We really are superheroes. Everyday superheroes endure these kinds of situations, mostly silently, and we do it well.  We’ve done it for years and we will continue to do it because that’s what superheroes do. That, and we don’t really have a choice.  So let’s go don our invisible capes and get through our holidays and remember, that when it’s all over, we don’t have to do it again for a whole entire year!  Now, isn’t that more fun than just getting a lump of coal? Eh, I’m still not sure. Happy Holidays!

About The Author

Jenni Lock is the creator of Jenni’s Guts blog and writes about her journey with intestinal nonsense and other chronic health issues. Her sense of humor, sarcasm, and willingness to talk about the things most people just think are all part of her charm. Learn more about Jenni and her guts at JennisGuts.blogspot.com.

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What Helps Me to Stay Strong (Through My Family’s Chronic Illness Journey)

What Helps Me to Stay Strong (Through My Family's Chronic Illness Journey)

I’ve always found it difficult to share my feelings with other people. I would keep it all to myself. This, however, changed when we received the latest diagnosis for both my daughters. 

Let me start by giving you some background information about me and my family: It’s just me and my girls, and we live in Holland. We are also known as the bendy bunch, all three of us have Ehlers Danlos syndrome. And as a bonus, we all have some similar and some different additional illnesses (which we like to refer to as extra toppings). Mine are adenomyosis, dilated aorta, retinal vein occlusions, high blood pressure, and I no longer have my own teeth. Both my daughters have POTS, ME and as we know now since June this year Craniocervical Instability (CCI), Atlantoaxial instability (AAI), hindbrain herniation, and the youngest is close to brainstem compression. When they were giving out chronical illnesses, we were obviously front in line… And I’m pretty sure I forgot to write some of them down. 

The shock of these new diagnoses

The latest diagnoses were a shock. We’ve been dealing with chronic illnesses for quite a while now, but this one really gave me a scare. Not one, but both my girls have a life-threatening and life-limiting disease. And as I usually do when I get stressed, I started planning and thinking about what could be done to fix this. I turned to the insurance company, but the treatment, an operation done in another country, wasn’t covered. This didn’t come as a big surprise, because we had to go to another country for the diagnosis which, as you can probably guess, was also not covered.

The stress of receiving new, life threatening diagnoses

As I continued to process this, my thoughts went in all different directions as my emotions went into a spin. You wouldn’t have known that, though. On the outside I was calm and rational, and I tried to stay that way. I had to be strong for my daughters. They needed to know that everything would be okay, or at least, as normal as possible. When we received the news about these diagnoses, the adrenaline took over and I went into first, second and third gear. I’m still feeling it after two months because if I let go of this adrenaline, I’m afraid I’ll break down. And that’s not an option. 

Creating a Foundation and Establishing a Social Media Presence

In the last two moths following the diagnoses I started a foundation called Help Jane & Rosa battle CCI/AAI. We had to go to a notary office to make it official. As a result of the Dutch tax laws, I found that a foundation is the best way to go. Otherwise, all donations would be considered an income. Friends of mine built the website, and I deliver all of the text and images. We have also created a Facebook page, an Instagram account, a Twitter account and a YouTube channel. Unfortunately, most of the videos on our YouTube channel are in Dutch, however we try to make some English versions too.

How blogging has helped me cope with my family's chronic illness journey

Filming these videos was really awkward for me. In the beginning of this article I mentioned that I’m not a great sharer, but as you can see, I’ve stepped outside all of those boundaries I once had. Writing about what’s going on in our lives is one thing, however filming videos was a huge step for me. If you want a grin you should check it out. Even with me speaking in Dutch you can see how exposed and awkward I feel. Luckily my daughters, especially Jane, are taking care of the video aspect. This meant I could start writing a blog for our website. All this work establishing a social media presence is to raise more awareness and to fight for an operation for both of my girls.

The Support of Friends, Family, and Aquiantances

I always knew I had great friends and family (not all of my family has been supportive, but who has a perfect family?) but what really surprised me is how supportive even my colleagues have been. Not only have they supported me by making a donation, they have also done so much more. One started designing T-shirts, one started developing calendars, and Jane’s old school of is thinking about a project for raising funds. They offer help in any way they can. I know not everyone is so lucky, and for me, receiving all this support was a true eye opener.

I realised that not only was I bad at sharing, I was also reluctant to ask for help. I surprised a lot of people by reaching out for help, and as the time goes by, it gets easier to do so. I still blush when I do, especially when I do it face to face. But I’m managing it and it makes me proud that I do. Today during a coffee break at work, I asked the owner of the coffee bar if he could share our fundraising page and make a donation. And again, the warmth of people was overwhelming.

The support of my friends, family, and acquaintances is very important

On the workdays I’ve been drinking my morning coffee there for over the last five years, my daughters’ illnesses have come up in some conversation. He was very concerned for their health and immediately started thinking about things he could do to help. This shows that even acquaintances are sometimes more than just people you meet now and then. The bond you have with them is sometimes stronger than you think.

All Of This Helps Me To Stay Strong

Blogging and writing about how I feel what’s going on, and where we stand is really helping me cope. Sometimes it puts things into perspective or helps me to channel my emotions in a constructive way. Today I felt sad while I was going to work. I was quiet during a meeting because my thoughts were all over the place and I felt like I could burst into tears at any moment. So, I started writing this article, thinking about all that has happened in the past two months and all that I’ve achieved. And for a chronically ill mum, with chronically ill daughters, I feel like that’s a lot.

So, I’ll keep you posted about how all of these illnesses have an effect on us and our lives, about how the fundraising is going and what difficulties comes with raising funds, and how all of this mixes with work and day to day life. Sometimes it’ll be sad, sometimes it’ll be fun and sometimes it’s just how it is. Because every day is different and life don’t always turns out as planned. And that’s okay, as long as we have each other we’ll get wherever we want to go, eventually. The love in our family will always get us through the rough spots and that’s how I stay strong. 

Monique Blaauw is a mother of two daughters (20 and 19). Founder, chair(wo)man and treasurer of the Help Jane & Rosa battle CCI/AAI foundation. She has been a single mother for 18 and a half years. Works fulltime, as well as being the caregiver for both her chronically ill daughters and older mother and is chronically ill herself. 

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Why The “You Can Do Anything If You Try” Narrative Is Harmful to Chronically Ill and Disabled Youth

We hear the phrase “you can do anything if you try,” or something similar, throughout our entire lives; starting at preschool and kindergarten and continuing throughout school. And sure, for many children this may be true; if they put their efforts into something, they may eventually master their craft and achieve all their goals.

However, this phrase completely ignores the fact that we each have our own unique strengths and weaknesses. Someone who is naturally good at maths is going to do far better in that subject than someone who is not. And that’s ok.

Why The "You Can Do Anything If You Try" Narrative Is Harmful to Chronically Ill and Disabled Youth

This phrase becomes even more illogical once you consider that it is also often applied to disabled and chronically ill youth. When experiencing a disability or chronic illness, you often can’t do certain things, no matter how hard you try. So why is it being drilled into disabled and chronically ill youth that they can? Isn’t this harmful? Wouldn’t this lead to false expectations and damaged self-esteem? 

You may be reading this and be thinking that I’m just cynical. This article may even be seen as a little negative and controversial. However, for me, finally realising that I couldn’t do ‘everything if I put enough effort into it’ was freeing. I’ll explain why;

Coming to the realisation that I can’t do everything I try

After a lifetime of feeling like I haven’t been achieving enough (through my grades, sport, etc.), last year I had to give up studying the course that would have led me to my dream career due to my health. I felt so dejected because all my life I had been taught that I can do anything if I try hard enough.

Why The "You Can Do Anything If You Try" Narrative Is Harmful to Chronically Ill and Disabled Youth

The thing is, I WAS trying. I was working myself into exhaustion, but it still wasn’t enough. I felt like I wasn’t enough. I felt horrible about myself, to the point of feeling depressed. However, I got back up and found another course that I would be able to study without having as big of an impact on my health. I still felt horrible, but I did my best and found that this course was a lot better for me.

Six months in, I came to a realisation. I didn’t fail at continuing with the previous course because I wasn’t trying hard enough, I failed at continuing because my health didn’t allow it. It wasn’t apathy on my part, it was an actual, physical limitation.

Once I accepted my limitations, this led me to become a lot more accepting of myself. I wish I had come to this conclusion sooner; it would have saved me a lot of heartache. 

Being told that I could do anything I wanted as a child set me up for a lot of disappointment. And despite how harmful this narrative is, I see evidence that it is still being told to children every single day. Here are some other phrases that are often directed at chronically ill and disabled youth that also fit within this narrative:

“The only disability in life is a bad attitude.” 

This one especially upsets me. It wasn’t a bad attitude that caused me to experience immense chronic pain on a daily basis starting in childhood. It isn’t a bad attitude that has left me using a walking cane most of the day to get around.

This phrase takes the word “disability”, a word that has a lot of meaning to a lot of people, and tries to change the definition completely. This phrase frames disability as apathy towards carrying out tasks, rather than an actual inability to carry out these tasks. 

The “What’s your excuse?” comparisons

You may have seen memes depicting disabled athletes, with phrases written across them saying things such as “what’s your excuse?” or even worse, “Your excuse is invalid.” These memes basically use disabled people to shame others (including other disabled people) into thinking they need to adopt certain habits or push themselves past their limits. 

Why The "You Can Do Anything If You Try" Narrative Is Harmful to Chronically Ill and Disabled Youth

I understand wanting to come up with a viral, inspirational meme, but chronically ill and disabled people should not be exploited in the process. I know able-bodied and disabled people alike who agree that these memes are very harmful, especially in an age where social media is such a huge part of our lives, even more so for the youth.

My “excuse”, as they put it in the second quote, is certainly not “invalid”. I will never be an award-winning athlete, as the constant pain and exhaustion make exercise difficult. I will never be an award-winning mathematician because the brain fog makes remembering formulas difficult. I’m ok with that.

As I said above, everyone has their own strengths and weaknesses. Just because one disabled or chronically ill person achieves something, does not mean every other disabled or chronically ill person can.

You can’t judge a group of people by the actions of a few, and they certainly shouldn’t be shamed just because a member of the community has achieved something that they haven’t. 

“There’s no such word as ‘can’t’”

This phrase confused me a lot as a child. Mostly because my young brain would take it literally, and I knew the word “can’t” did exist. When I was presented with this phrase, for the longest time I would go fetch the dictionary to prove them wrong.

It also confused me because I knew there were things that I, and other humans, couldn’t do. I can’t fly independent of a form of aircraft. I can’t breathe underwater without using a snorkel or oxygen tank. The word “can’t” doesn’t have to be a negative word attributed to pessimists, and knowing when to accept your limits shouldn’t be considered negative either.

Why The "You Can Do Anything If You Try" Narrative Is Harmful to Chronically Ill and Disabled Youth

“Don’t let your disability define you.”

Another phrase that is often said to chronically ill or disabled youth is that we “shouldn’t let our disabilities/chronic illnesses hold us back” or “shouldn’t let our disabilities/chronic illnesses define us”. I find this to be a very naive take.

Sure, we aren’t wholly defined by our disability/ies, but what we are able to do often is. There are ways to overcome these challenges, but only to a certain extent. There are some things that, no matter how hard you push yourself, you’ll never be able to achieve.

Accepting that isn’t letting your disability define you, it’s understanding your limits and knowing there are better areas to concentrate your energy. 

I’ve even had people tell me that I shouldn’t talk about my chronic illness or disability – at all. That talking about my chronic illness or disability is letting my health control me and consume my thoughts.

My disability is a part of me. I can acknowledge my disability’s effect on my life and be proud of what I achieve despite it without letting it define me. Not to mention, it’s hard not to think about your chronic pain when you experience it every minute of the day… But that’s easy to ignore, right?

While on the surface these phrases may seem inspirational, they may do more harm than good when it comes to disabled and chronically ill youth. They can lead to false hope, which can chip away at the young person’s self-esteem when they don’t achieve everything they aim to like it did to me.

Not everyone can do everything, no matter how hard they try. Instead, we should be encouraging disabled and chronically ill youth to try their hardest to achieve goals that are realistic, yet also push and challenge them at the same time.

If there’s one thing I want disabled and chronically ill youth to take away from this article, it is that you should feel comfortable doing what you CAN. With the help of those who care about you, set your own pace in life.

Push yourself, but not so hard that your goals become unachievable. Don’t let society tell you that trying your hardest isn’t good enough, because it is. Know that you are enough.

About The Author

Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.

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Tips to Make Sure Your Doctors Hear You (It’s Important For Your Health)

It’s no secret that women’s medical issues have historically been minimized and dismissed by healthcare professionals worldwide. In ancient Greece, doctors described how the uterus is like a living breathing creature that wreaks havoc on our systems and so I would expect Dr. Hippocrates to tell me that my illness is hysteria. I expect that from medical care from centuries ago.  

We’ve come a long way since then, so I wouldn’t expect an ER doctor to say that in the 21st century. 

Welcome To Medical Care in the 21st century of the Middle Ages

But yet, that’s exactly what happened. I went in with high blood pressure, chest pain, and fatigue, and I was told there was nothing wrong with me, and to go home. That was the first of many times that doctors dismissed me, ignored my complaints, or told me to relax. (Yes, it was, in fact, my doctor and not Frankie who said, “RELAX”). 

4 Tips to Make Sure your Doctors Hear You

I had to deal with:

  • The doctor who told me that my migraines were here to stay, so I should just take some Excedrin and get used to agonizing pain being the rest of my life. 
  • The urologist who told me that despite the fact that I can feel my bladder pretty much 24/7 that there was nothing wrong with me, and he couldn’t help me. 
  • And the primary care doc who treated me like I was a checklist to complete and hand back to the insurance adjustors. 

But that was the first time I fully understood what it meant. It meant that it didn’t matter that I was in pain, or sick, or struggling – they just wanted me out of there. I remember the feeling of being half-naked in a hospital bed, with wires attached to my chest.

4 Tips to Make Sure your Doctors Hear You

Vulnerable and afraid, now I had a new feeling. Shame. I felt ashamed for wasting their time. No. that wasn’t it. I felt ashamed because they made me feel like I was wasting their time. 

In my replays of that scene, I’m assertive, and I make my case. I floor him with my eloquence calling him out on his misogyny. I tell him he’s dismissing me, and I ask for a second opinion. 

In real life, I burst into tears. 

Making My Voice Heard

I didn’t know what to do, but I was going to make my voice heard. Unfortunately, as it turns out, no one wanted to listen. Calls to their patient advocacy office went unanswered, and no one other than the billing department even seemed to remember or care that I was a patient, a customer of their establishment.  I tried to advocate for myself – but no one was listening. We need to make ourselves a priority

My experience isn’t unique. A quick search on Google reveals that this is an ongoing problem. John Oliver did a piece on the disparity of treatment between men and women by healthcare professionals that sounds like our medical system is stuck in the dark ages. And unfortunately, there’s plenty of evidence in the laws being passed that women’s health simply isn’t a priority. And it won’t be unless we make it one. 

Prioritizing

The other day I was driving my husband to the airport and my chest started to hurt. I suffer from chronic pain from an undiagnosed mystery condition (otherwise known as IDS – Ignored by Doctor Syndrome), so I tend to simply ignore it. It’ll go away in a few days. 6 years later I’m still saying that.

I realized that as much as I hate to admit it, part of the problem is me. I rely on humour to cope, so I spend a lot of time minimizing my own symptoms and pain, historically even with my doctors. I was always putting everyone else ahead of myself because I’d lived with the pain for so long, why prioritize it now.

I bring it up at my checkups, but it’s routinely ignored. It occurred to me that if Alex was in pain, he’d go to the doctor, he’d be seen, and he’d come out of there with a solution. He simply wouldn’t entertain any other option.

Why wasn’t I doing the same thing?

I realized that as much as I hate to admit it, part of the problem is me. I rely on humour to cope, so I spend a lot of time minimizing my own symptoms and pain, historically even with my doctors. I was always putting everyone else ahead of myself because I’d lived with the pain for so long, why prioritize it now. 

The question I should have been asking is why not prioritize it now? My family relies on me to take care of myself to be around for years to come, and part of that means taking an interest in my own healthcare. I’m done ignoring my health, and I’m done letting others ignore it too. For the first time in my life, I am going to prioritize myself. 

Because that’s what we need. As chronically ill patients, we need to put ourselves first so that we’re around to take care of the people we love. I resolved to set up a system to make sure I get listened to and get the healthcare I deserve. 

Take Yourself Seriously

The first thing that we as women need to do to make sure we’re taken seriously is to take ourselves seriously. If you tend to downplay your pain or put on a brave face by minimizing your pain or your symptoms, even the best of doctors is going to have trouble diagnosing you.

Pay attention to your body and be mindful of your symptoms. Don’t ignore them simply because you’ve had them for a long time. If you’ve been in pain for a while and don’t know why, that’s something to take note of. 

Write It Down

Tips to Make Sure your Doctors Hear You (And Why It's Important)

I always think of things I need to discuss with my doctor in the most random places and times. In an escape room, while I’m doing dishes, or right before bed. I always say I’ll remember but I never do. Write down your issues when you think of them, and don’t dismiss them when you’re in the doctor’s office just because you aren’t feeling that way at that moment. Articulate the feeling in your smartphone or your journal or notebook so you have it to refer to. 

Do Your Homework

This one is the most time consuming but will make a difference. Research your doctors on Yelp, Angie’s List or Healthgrades. Look for people with 3+ star reviews and read through them to learn why people rated the way they did. Google the doctor to see if there are any articles or blog posts written about them that raise red flags. You can also check with your friends and family to see if they have someone that they recommend. 

This part may not work well for everyone, but if you aren’t happy with your experience, try another doctor. Years ago, I went to see 5 different physicians before I found the doctor I was with for 6 years, and I would have stayed with if he hadn’t relocated.  

Enlist A Friend

If you’re worried about your ability to remain calm and put together or advocate for yourself, bring a friend or a family member you trust with you. 

I’ve been in pain as long as I can remember, and I’ve been ignored for years, and sometimes I get tired of fighting and feeling like its an uphill battle. I remembered though that as long as I have a voice, and I do, I can speak up for myself and others, and I can be heard. As long as I have a choice, I can find healthcare professionals to take me seriously. I don’t have to stay where I am, I can always make a different choice. 

Have you found any techniques that work particularly well for you to get taken seriously by healthcare professionals? 

About The Author

Minessa Konecky is a social media strategist and business coach who has lived with an assortment of chronic illnesses since her teens including chronic back pain, migraine, general anxiety, and depression. Instead of a unicorn, she’s opted for a dragon as her unique snowflake avatar because for her they symbolize wisdom and strength that help her triumph over her restrictions, but also let her take a nap when she needs one. She enjoys bingewatching post-apocalyptic TV shows, meditation, playing with her 3 mini huskies and has an encyclopedic knowledge of pointless 80s and 90s media trivia. 

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The Side Effects Of Having Fun When You Have A Chronic Illness

I guess you could say that I have the interests of an average 19-year-old girl. I like to read, watch makeup tutorials, and binge watch series on Netflix. I also enjoy hanging out with friends and socialising, when I have the energy to. Having struggled with the chronic pain of Fibromyalgia since childhood has shaped my adolescence in many ways.

The Side Effects Of Having Fun When You Have A Chronic Illness

An Average Girl

There are so many things that I wanted to do but couldn’t. I wanted to play sports throughout high school, I wanted to go overseas for a gap year after graduating, and I wanted to study Speech-Language Therapy at university once I got back. As a result of my chronic pain, none of these things was meant to be.

While this upsets me, I do everything that I can to ensure that my chronic pain limits my day-to-day life as little as possible, especially my social life. Besides just hanging out, something I love doing with my friends is going out dancing. As you can imagine, dancing (or more like swaying side to side, in my case), is exhausting.

Going out for a single night of dancing can leave me flaring for up to a week afterwards. Another thing I like to do, that I don’t do nearly as often as dancing, is going to the theme park. This can easily become a full day affair. The constant walking along with the jarring of the rides can leave my entire body aching for days.

Some people may scoff at my enjoyment of these activities. After all, why would I do something that causes me pain? The answer is this: everything I do causes me pain. I’m in pain every second of the day. I’m in pain while I walk, I’m in pain while I sit, and I’m in pain while I rest.

When pain and/or fatigue rules your life so thoroughly, it can become a goal to not let it stop you from having fun. It’s almost as if I have something to prove to myself; that I won’t let the pain take my ability to have fun away. And luckily, it hasn’t. However, having fun with chronic illness can often cause side effects.

The Pain In The Moment

For me, the pain that I experience in the moment of doing an activity can definitely put a damper on any fun I may be having. As the day develops, my pain slowly gets worse. Having pain in one area is bad enough, however having pain that is spread throughout your entire body can be so incredibly overwhelming. The pain can sometimes result in me unconsciously becoming very grumpy, which can ruin the rest of the day.

Not only does pain impact any activities I take part in, but it also prevents me from doing specific activities that I would otherwise want to do. Despite me enjoying being active (it’s the resulting pain that I don’t enjoy), I can’t take part in activities such as hiking and kayaking because they raise my pain to unbearable levels.

Of course I often I push myself to do activities that I know will result in heaps of pain, however, it becomes a fine balance between being able to barely cope with the pain, and curling up in a ball, moaning as pain consumes me. I like to avoid the latter option.

The Side Effects Of Having Fun When You Have A Chronic Illness

Brain Fog

Another symptom that can ruin my fun is brain fog. For me, brain fog is very distracting, especially if I’m out trying to have fun. I feel like no matter how hard I try to concentrate; I can’t think or talk straight. Most of the time I have brain fog I feel like I can barely string a sentence together, that I’m talking nonsense.

When the brain fog is at its worst, I feel like my mind and mouth are numb. I can’t bring myself to speak, no matter how much I want to. I also can’t process what people are saying to me easily. Since this level of brain fog only occurs when I’m in very extreme levels of pain, I normally have warning signs leading up to this and can get myself home before I lose the ability to communicate.

The Recovery Time

Depending on how much energy I expend on an activity, my recovery can take anywhere from 3 days to an entire week. If I continually exhaust myself day after day without resting for a few or more days, I can be left feeling ill for weeks. I have learned this the hard way.

Every person with chronic illness has different symptoms that they experience during their ‘recovery period’. These symptoms can include muscle cramps, fever, flu-like symptoms, migraines, and of course likely the most common one, fatigue.

Recovery for me usually consists of lying in bed, too tired and too sore to get up for anything that isn’t imperative. I get an ache that is somehow both dull and sharp throughout my entire body and having such widespread pain only adds to my exhaustion.

So far, besides medication and rest, I haven’t found anything that helps with this kind of pain once it’s occurring. As a result of this, whenever I am planning something that I know will leave me flaring, I try to make sure that I don’t have any responsibilities (such as exams) or events for at least three days after the activity. That way, I can recover without missing out on something important or having to push myself.

The Guilt

I worry that whenever I’m seen out having fun, or whenever I post a picture of myself having fun on Instagram or Facebook, that people may see this as evidence that I’m not sick or that I’m making my symptoms up. In some countries, the social media accounts of chronically ill people are being used to determine whether or not they are “sick enough” to receive disability cheques from the government.

I find this ridiculous as I’m more likely to post a photo of myself on the rare occasions that I’m dressed up to go out, then I am to post one when I’m at home, barely able to move because of pain. Going out and having fun when you have a chronic illness a bit of a catch-22.

If chronically ill people don’t do enough, then they’re called lazy. If they do too much, then they aren’t sick anymore. Having a chronic illness and going about life is hard enough without having to face the judgement of others.

The Side Effects Of Having Fun When You Have A Chronic Illness

How To Have Fun With Fewer Side Effects

When I want to spend time with my friends but I’m flaring badly, I invite a friend or two over for a sleepover or a movie and some drinks (the legal drinking age is 18 here). It may seem kind of juvenile, but I will never get too old for sleepovers. This way, I can sit on the couch or lie in bed while catching up with besties. This is also a great time to catch up on Netflix movies.

If there’s no way to avoid a lot of physical activity that day, I make sure to keep my medication on me in case my pain levels become high.  Keeping your medication on you guarantees that if you need it for whatever reason, you have some on you.

Another tip for high activity days is if you are easily exhausted, don’t be too self-conscious to use a walking or mobility aid. My walking aid of choice is a walking cane, since it’s less harsh on my shoulders and back then crutches. Since the common stigma for walking canes is that they are exclusively for use of the elderly, I used to push myself too far because I was worried I would be judged for using a walking cane.

If the place we’re attending has a wheelchair that can be loaned out, such as a mall or a zoo, I will borrow the wheelchair if I know that I’m going to have a rough pain day. I don’t have a wheelchair (for ambulatory use) of my own yet, however, it is definitely a goal of mine.

If you’re heat/sun sensitive, try to choose activities where you can spend a lot of time in the shade. If sun hats and sunglasses help, make sure to keep some on you. Also, no matter what your symptoms are, keeping hydrated is important for your general daily well being. Make sure that you keep a bottle of water on you if you’re going to be out of the house for more than an hour at a time.

Having fun when you have a chronic illness can be very difficult, however, it is so important. It is easy to think that chronic illness takes the fun out of life, however, that isn’t the case. While I’m in pain every second of every day, I still aim to make the best of the life I’ve been given.

About The Author

Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.

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Comments That Are Hurtful to Recieve When You Live with Chronic Illness

I have lived with Chronic Pain and Chronic Fatigue for over 30 years now…I recently turned 57. My illnesses include Fibromyalgia, Osteoarthritis in all my major joints, Myofascial Pain, a spinal condition called D.I.S.H., Gastroparesis, Atypical Trigeminal Neuralgia, Diabetes Type 2 and Bipolar Disorder. Most of my illnesses are invisible. To look at me, you would probably think I’m a healthy woman, but in reality, I’m suffering every day, all day. I use a cane for mobility and often a walker, and when the distance is too far, I use a wheelchair. Despite that, I have been on the receiving end of some hurtful comments and I’d like to address them here.

1. “You don’t look THAT disabled – are you sure you need that cane/walker/wheelchair?”

Yes, I’ve actually been asked that. Now, it’s important that you understand I’m a great advocate for myself, and I don’t put up with nonsense like that. My reply was “exactly HOW disabled do I need to be to use these mobility aids?”. They, of course, had no answer for that. Please don’t make comments about our abilities or lack of them. I do what I need to do to keep my body moving. I’m the best judge of my condition and what I’ll benefit from, not you. Unless you’re walking in my shoes, please don’t judge me.

2. “Oh, I’m tired too, I know exactly how you feel.”

Ah, Chronic Fatigue…how I hate you so. And unless you’ve been diagnosed with it, you have no idea what ‘tired’ really is. Chronic Fatigue leaves you so debilitated that you could sleep for 16 hours and still wake up exhausted. You have to rest after having a shower or bath because you’re shaking so badly from the exertion. Chronic Fatigue is like swimming in concrete, every movement takes enormous amounts of energy and the simplest tasks like brushing your hair or washing your hands take effort and concentration.

Being told "I'm tired too" when you experience chronic fatigue.

Don’t forget about things like working or raising kids when you have Chronic Fatigue…you feel like a lousy employee or an unfit parent when you suffer like this. Every task is a Herculean feat and there’s no way to win. Oh, and it’s every day and night too!

3. “Have you tried (fill in the blank)?”

I appreciate that people want to help, I really do. The thing is, I’m desperate to feel better, so I’ve tried everything that’s out there. Every drug, every therapy, every alternative option including CBD products, Essential Oils, Nutraceuticals… you name it, I’ve tried it.  

When you make these suggestions to me, you make me feel like I’m not doing enough; and it diminishes the hard work that I HAVE been doing to get well. Again, I know people are trying to help, but just stop it. You’re not helping at all. If you really want to make a difference, ask your loved one or friend with a chronic Illness if there is any research you can do for them in regards to new treatments. That way, you’re not taking control of the person’s health, but you’re still offering to be helpful. And if we say ‘no thank you’, take that at face value and don’t surprise us later with a list of “things” that might help.

4. “Well, you don’t look that sick.”

This goes hand in hand with number one. First of all, how sick do I have to look to satisfy you? Do I need to have dark circles under my eyes, and have greasy hair? Wear sloppy clothes because I’m too ill to care for myself? I may be chronically ill, but I still take pride in my appearance, especially if I’m going to be in public. Sure, it takes effort, but to me, it’s worth it. Some makeup, a nice outfit…it doesn’t take much, but I want to look as good as I can because my illnesses already robs me of so much in my life. Why should I let them take away from my personal appearance as well? And no offense, but I’m not living my life to meet your standards anyway…I’m living life to meet MY standards, which haven’t changed from before I became ill.

Not looking sick when I apply makeup, as someone with chronic illness.

5. “When are you going to get better? You’re always in poor health.”

Hmmm, let’s define the word “chronic” for you. It means ongoing, persistent, without end. As in, my Chronic Illness is never going to go away. I may have periods of remission where my body is cooperating and things are better than they have been, but that doesn’t mean the illness has gone away…it just means it’s in remission. At any point, things can change and I could find myself bed-bound. Again.

When you ask a person a question like this, it only serves to depress us. We’d love to get better and live a normal life again, but this is a life sentence that we’ve been handed; and there’s no parole. Please don’t say this to someone living with Chronic Illness…tell us instead that you hope things will improve for us or that you’re not giving up hope for better days ahead. That’s what we hope for too.

Maintain hope for those you know with chronic illness.

I know that people often don’t mean to be rude or ignorant, but sometimes the questions seem to be asked without people thinking first. Please remember that we have been living our lives like this for probably a long time, and we’ve heard it all before. Think before you speak and put yourself in our shoes before you ask a question. Would you want to answer it? If the answer is no, then don’t ask. Just tell us you’re thinking of us and sending good thoughts. We appreciate that the most.   

Pamela Jessen lives in Langford, BC Canada. She is a blogger who writes about Chronic Pain, Chronic Fatigue and Invisible Illness at pamelajessen.com  She also writes for The Mighty, PainResource.com and various independent publications. Pamela is also a Patient Advocate with the Patient Voices Network in BC.  She sits on 4 committees and one Provincial working group and has also been involved in advocacy work at the Canadian National level as well. Pamela is married to her amazing husband Ray and they have one cat named Dorie. 

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Tips and Tricks for Studying At University/College While Experiencing Chronic Pain

Tips and Tricks for Studying With a Chronic Illness

Since I first started complaining of experiencing Fibromyalgia symptoms such as chronic pain at the age of 7, attending school has progressively become more and more difficult. Now, 12 years later, I experience constant widespread pain and fatigue. Despite the constant pain that is undoubtedly made worse by me attending university, I still love studying.

I’m the kind of person that enjoyed attending school as a child, and since I’ve been signed off work by my doctor, I feel like I’d be incomplete without study. Distance study could be an option for me since I become exhausted easily, however, I find that I don’t have the same motivation to complete work that I have when I attend classes at a campus.

Tips and Tricks for Studying At University/College While Experiencing Chronic Pain

I find that I have the mindset of if I travel into university, I may as well make the trip worth it by getting as much work done as possible. Plus, despite how boring they can be, I love the vibes of lectures and tutorials.

Please keep in mind that since I live and attend a university in New Zealand, some of these tips and tricks may not be applicable internationally. However, I hope that some of these tips and tricks are helpful to any students with chronic illness who may be reading this article.

Don’t Discount The Option Of Part-time Study

When I was first applying for university, I didn’t want to think about part-time study. I thought that because I (barely) managed full-time study through high school, I should be able to manage full time at university too. Basically, I was in denial. I thought that studying part-time would mean that I wasn’t coping as well as I should be and that I would be less of a student.

Luckily, I was turned down for the full-time program I had applied for, so instead, I had to do a part-time, four days a week program for a year to see if I would cope with the difficulty of the classes. While I did pass my classes during that year, the four-days-a-week schedule was very stressful and caused my health to go downhill. 

Due to this, I had to dismiss the full-time program as an option for the next year, despite it being the only program that would give me the qualifications I need for my dream career. When I first had to come to terms with this it was a little heartbreaking. It felt like my dreams and aspirations were crumbling down around me. I now am studying part-time, three days a week in a completely different field. And while this is still difficult for me, I am far more comfortable attending university than I was before.

Tips and Tricks for Studying At University/College While Experiencing Chronic Pain

Contact Disability Services At Your Institution Of Study

When I first started applying to universities during my final year of high school, one of the first things I did was check out their Disability Services and the application process. I had been under the high school equivalent, which, I was told, considerably increased my chances of being accepted by the service. Being under similar services at high school gave me insight as to what to expect and what assistance I may be able to ask for.

The application process was pretty simple. I was given a form to fill out, which required not only a doctor’s input as to what assistance I required but also allowed me to write a paragraph myself about my chronic pain and how it affects my studies. I also attached some notes from my Chronic Pain Clinic Physiotherapist, who I had been seeing for the past two years at that stage, to add further context to my application.

Disability Services has helped me with many things. They have made sure I have a supportive chair in the classes that allow it, and exam considerations such as rest breaks (due to my back pain) and extra time (due to me having Complex Regional Pain Syndrome in the wrist I write with, and brain fog causing concentration issues). I definitely recommend checking to see if this is an option available to you at the institution you attend.

Don’t Be Too Self-conscious To Use A Walking Aid If You Need One

I have been using a walking cane since I was 16. Before that, I had been using crutches constantly to help cope with my hip, knee, ankle, and back pain. I switched to a walking cane because crutches became too harsh on my back and shoulders, causing too much pain to make using crutches worth it. 

Being a young person who uses a walking cane, there are times when I can become very self-conscious, especially around other people my age. As you can imagine, this left me very anxious about the prospect of using my walking cane at university. However, I realised that I do need the walking cane to get through the day without collapsing from pain and exhaustion, so I decided that what other people thought of me didn’t matter.

Since my pain levels fluctuate, I love using a walking cane that folds up. This means that I can pack it away in my bag when my pain levels are lower, and then bring it back out when my pain levels are high.

Tips and Tricks for Studying At University/College While Experiencing Chronic Pain

Set Daily Or Weekly Study Goals Instead Of Schedules

Many students like to create an hour-by-hour schedule for completing their assessments and studying content from their lectures. However, when you’re in constant, fluctuating pain, this may not be manageable for you. For me personally, setting a schedule would be like setting myself up to fail, because my pain levels are never at a constant level (unless I’m having a really bad day and the pain is constantly high).

So, say I schedule an hour of study for 4:00pm. I may be feeling ok that morning, but by 4:00 I may be so tired and sore that I can’t concentrate. Instead, I like to set goals such as reading a chapter of a textbook a day leading up to an exam or aiming to complete a certain amount of an assignment within a certain amount of time.

During a particularly bad flare, I may not be able to achieve these goals, but when I’m not in extreme amounts of pain, these goals make studying while in pain achievable.

Keep Your Medication On You

I’m often guilty of forgetting to do this. While I take two large sets of pills first thing in the morning as well as at night, I also take pain medication during the day if required. I find it is far better to have my medication with me and not need it than it is to need my medication and not have any on me. 

Since I travel two and a half hours each way to get to my university, the chances are high that I’ll need medication at some stage during the day. Being in too much pain can seriously affect my ability to pay attention in class and take notes, which in turn can put my grades at risk.

For this reason, it is imperative that I don’t forget to pack a sleeve of pain pills in my bag. I also love taking a small tube of Voltaren Emulgel with me to university. It is great for massaging acute aches and pains and works especially well on the swelling I get in my wrist.

Explore Your Campus And Find A Place You Can Rest In Between Classes

If you don’t live on campus and suffer from fatigue, this tip can be incredibly useful. My favourite space to rest at university is a room in the library that has couches and large bean bags. If a bean bag is available, I can put all my stuff down, lay back, and relax. This space also allows eating and drinking, so I can eat lunch and chill in this space.

Tips and Tricks for Studying At University/College While Experiencing Chronic Pain

Stay Hydrated

This tip may seem extremely obvious to people, however, I am often guilty of not drinking enough. I personally like to pack a water bottle that is at least one litre in my bag. While staying hydrated isn’t going to cure your symptoms, it does help with your overall feeling of wellness.

Use An Online Editor For Your Essays 

This is honestly a life-saver when it comes to handing in essays. Often when a deadline is looming and I’m finishing off my assignment, my stress levels rise, and as a result, my pain and fatigue levels also do too. This can lead to me experiencing brain-fog as I write, which can result in anything from grammar mistakes to me writing utter nonsense without realising it.

Using a free online editor program such as Grammarly, I can detect any grammar, spelling, or punctuation errors and correct them.

Pace Yourself

It’s very easy to think you can push through your pain, but then you may end up pushing yourself too hard. It can be so incredibly tempting to “boom and bust”, this, however, can cause more harm than good, especially to your health. For the good of your health and grades, try not to take on too much work at once.

While attending University is definitely a struggle, I absolutely think it’s worth it. It gives me a sense of purpose that I may not have otherwise, and a chance to socialise and expand my knowledge. I hope these tips are useful to any students with chronic illness, and I wish you all the best with your studies.

About The Author

Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.

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Depression: In The Depths Of The Nothingness

Depression: In The Depths Of The Nothingness

Writing may be one of my biggest loves in this life, but it’s also one of my biggest struggles thanks to my health. As a person with chronic illnesses and major mental health struggles, I don’t write as much as I would like to or as much as I used to.

I still find the same release in writing that I always have found but, more often than not, I just can’t bring myself to write. Post-exertional malaise from my ME, and cognitive difficulty from my fibromyalgia makes the activity of writing difficult in itself, but there’s more to it than that for me; a different kind of blockage that can be hard to pin down.

Depression: In The Depths Of The Nothingness

The Blockage

This piece has been doubly difficult for me to write. Not just because of the writing process itself, but because of the subject matter. I chose to write an article for Mental Health Week about depression. And depression makes me lose interest in the things I love. There’s definitely an irony in struggling to write about depression because of depression, isn’t there?

I want my writing to make others feel less alone, but how on earth was I going to approach this topic? When it comes to something as multifaceted as mental health, it can be difficult to know where to even start. My brain quickly got to work on bullying me.

Why would anyone want to read something you wrote anyway?

You have nothing interesting to say. All your work is bland and rubbish, just like you.

I don’t know why you even bother.

There are too many better writers out there. You’ll never be taken seriously.

Your thoughts aren’t valuable enough to be paid attention to.

So here I am, scrambling around inside my foggy brain trying to ignore the bullying thoughts in my head and to figure out whether anything I have to say about depression will even make sense enough to shape into an article.  

Describing The Indescribable?

Up until a few years ago, I thought of depression as an intruder. It would fully catch me off guard, kind of like a huge predator stalking in the shadows and then jumping out in front of me when I least expected it. Some people describe depression as a black dog which won’t leave you alone. As my life has gone on, I’ve come to see it more as some kind of dangerous plant, thriving in the darkness and slowly growing; creeping its way into my life until I’m swamped.

Its roots are deep, and its vines reach further and further into my present consciousness until I can feel them grasping me by the limbs and the throat, pulling me backwards into the dark. Sometimes the vines loosen their grip and retreat, and I can breathe again but, even then, I still know they’re only biding their time. They’re still there, lurking…ready to creep out of the shadow again at some point. And as the years have gone on, each trauma or stress that life has thrown my way has only strengthened the roots in those murky depths of my psyche. 

As well as the stigma, there’s a lot of misconceptions out there about depression. People often think that feeling down for a few days or a couple of weeks is being depressed. It’s not. That’s just feeling blue, which is something that most people experience at some point in their lives. Feeling down occasionally is part of our normal range of human emotion, just like feeling sad is. Feeling sad when something bad happens is not depression. That’s a normal reaction to something bad happening, and will usually dissipate with time. When the low mood persists long-term, that’s when it becomes a problem. 

Doctors and psychologists usually look out for common symptoms when diagnosing depression, such as a loss of interest in things that you normally enjoy, feelings of worthlessness or of despair, feelings of unrealness and even urges to harm yourself in some way. Check out this guide from the charity Mind to find out more about symptoms, causes and potential treatment options. Their website is also full of resources about other mental health disorders and information about where to find help.

The Numbness 

Perhaps my least favourite symptom that comes from being in a depressive episode is what I now call the nothingness. This is something that I have experienced since I was a teenager and still frightens me to this day when it happens. It’s not that I feel sad, or upset or even down, I just feel…nothing. In these times my emotional range seems to just shut down. I can’t feel anything or recall how emotions normally feel. It is the complete absence of feeling, and I wouldn’t wish it on anybody. It is the most isolating thing I have ever experienced, and every time I feel my mental health slipping I become fearful of that emotional numbing.

Perhaps my least favourite symptom that comes from being in a depressive episode is what I now call the nothingness.

When I’m numb, I would kill to feel sad or angry because then at least I would feel something. Many people I’ve tried to express this to simply can’t wrap their heads around it. I discovered a few months ago that this kind of emotional shutdown can be a response to past psychological trauma.

Going back to writing, it’s really no surprise that I struggle to do it a lot of the time. It’s sometimes like the parts of my brain that feed into creativity have been boarded up like an old abandoned house. It’s like somebody cauterized by ability to even think clearly, let alone comprehend those thoughts and translate them into words. 

Depression

Depression makes it feel as though my brain just won’t work in the way it’s supposed to; the way I know it can work. It feels like there is a thick cloud of fog filling up the spaces in my head. Things don’t seem right; things don’t make sense. I can’t even make decisions. The smallest of decisions feels disproportionately impossible. Do I want a glass of water or a glass of juice? Do I prefer red or blue? Am I a good person or a bad person for the answers I picked? I can’t decide what I want to watch, what I want to read, what music I want to listen to.

I know that I’m passionate about things, somewhere beneath all the fog, but those things seem shapeless; far away from me. I feel completely disconnected from myself, as though the body and mind I inhabit do not belong to me. I interact with my surroundings, but it’s all robotic. I’m not sure what is real.

It’s a cruel state of mind to be in. Perhaps it’s even crueller that all of this is invisible to the world around you and can be masked by a simple “I’m fine!” when somebody asks you how you’re feeling.

We have to be brave enough to answer “I’m not fine.”

About the Author:

Charlotte is a 26 year old writer from West Yorkshire in England. After a spinal cord tumour left her disabled at 19, she started writing about her experiences alongside her university studies. Her blog is called Of Books and Stardust. She also has ME and fibromyalgia, and has experienced mental health problems for most of her life. She writes to raise visibility and to help others feel less alone. Charlotte adores literature, has always loved caring for pet bunnies (or do they care for her?) and is passionate about spirituality, paganism and witchcraft.