Category: Fibromyalgia (FM)

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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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6 spot on memes about Fibromyalgia

Fibromyalgia is a condition that causes pain. There are many different symptoms that can range from pain, fatigue, migraines to insomnia, inflammation and sensory overload.

When you live with Fibromyalgia or know someone who lives with it, you may recognise what they are talking about in the memes.

Taking a shower can cause pain. When the pressure of the water is too high, or the warmth. The water hitting against the skin can cause real pain. This is one of the reasons I don’t like taking showers. Next to it causing pain, it’s super exhausting too.

The little monster in the meme is called Gia. She is the Chargimal that represents Fibromyalgia. Together with her friends she has adventures, but with caution cause she is low on energy due to her Fibro. You can learn more about her and the other Chargimals over here

Brain fog is a symptom of Fibromyalgia

I pick my clothes based on which body parts hurts the least that day. That’s also how I pick which chair to sit in today.

the answer is yes, every day

Living with Fibromyalgia is not for the weak. There is no known cure, and keeping symptoms and flare to a minimum is hard to do.

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At least it’s not cancer…

at least its not cancer

Let me start of by saying, I am very happy I don’t have cancer. It’s a horrible disease and I don’t wish it on anyone. That being said, telling me “At least it’s not cancer” is not making me feel any better.

Fibromyalgia the mysterious disease

I live with Fibromyalgia, there’s not a whole lot known about the disease. We have recently found out that it’s a progressive neuro-disease. At least that’s what they think now. It changes about every year, because the fact is, they really don’t know. It’s mysterious and there is no cure.

I am in pain every single day, the pain travels through my body. I never know how bad it’s gonna be, where it’s gonna show up or if I’m even able to function at all.

With fibromyalgia comes the fibro fog, or brain fog. That means that it feels like there is a thick fog in my brain preventing me to think clearly. Or even find the simplest of words, in any laguage for that matter (I speak three on a daily basis)

Next to my Fibromyalgia I have been diagnosed with Graves’ disease and Hashimoto’s disease (both autoimmune thyroid disorders), Celiac disease and Raynauds disease (both autoimmune as well). They say when you have one autoimmune disease, more will follow. Why is that though?

Many vague symptoms

Prior to being diagnosed with any of my conditions I had a long list of vague symptoms that didn’t seem to correlate to eachother. The first thing they test for is cancer. It’s the most well known disease that can show itself in different ways.

Along with a bunch of other test, including general autoimmune (ANA) test they came back. All your test results are negative. You are the picture of perfect health.

doctors don't know what's causing my symptoms

People around me were relieved. “At least it’s not cancer”. While I was relieved I didn’t have cancer, I still did’t know why I felt so ill all the time.

Graves’ Disease

At the young age of 19, after 3 years of being tested on a range of things without any results, this one came back positive. I had Graves’ disease. It was so extreme and in such far stages, that my main symptom (being out of breath) was caused by the strain on my heart.

At the age of 19 I was rushed into the heart monitor room because they were afraid I could have a heart attack at any moment.

But at least it’s not cancer, right?

The way to treat Graves’ disease back then, is to give you some type of chemo therapy, to slow your thyroid down. By the way chemo therapy is also used on patients with Lupus, RA and other autoimmune conditions as a treatment option.

A decade later

Fast forward a decade and some. The Graves’ disease is in remission, yay! I’ve gotten all the new diagnosis I’ve mentioned above. But also a msyterious new thing that is making me loose weight, fast. Very fast!

Even though I eat plenty, I keep loosing weight. Again they have done a lot of test, tested for cancer again. All clear. “At least it’s not cancer” someone says to me. Uhm that’s all nice and all, but I am loosing weight so rapidly that my organs are now in danger of failling. And they can’t figure out why.

lot's of health lab tests without a result

“At least it’s not cancer” is again not making me feel any better.

6 months go by, and I weigh 45kg/99 lbs and I am 1.73cm/5 feet 7 I am very very underweight. Finally they figure out I have a bacteria causing all my issues and the road to recovery can begin. Yet again

What does the future hold?

At this point in time I think I have all my autoimmune issues and other health stuff under control. They are chronic, meaning they will never go away. The furture is uncertain, because we simply don’t know how my issues will progess with time.

I have new undiagnosed issues, like my teeth dissolving from the inside out. No idea why that is happening, but we’re trying to treat it.

I concider myself very lucky that I don’t have cancer. That is a fact. It’s also not what the article is about. My point is, there are things that are just as bad and deadly as cancer. And things that need to be treated the same way as cancer. The diagnosis “not cancer” isn’t always a good one. Please remember that when you tell your friend next time “At least it’s not cancer”

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The implications of Having a Sitting Disability While in Public (My Personal Experience)

The term 'sitting disability' is unfortunately not well known or recognised. I myself didn't know this term until early this year, despite me having had trouble sitting for over 12 years. Issues with sitting are often an invisible disability, which can mean it's easily overlooked by people who don't experience it. Sitting disabilities can have many causes, mine is the result of pain in my lower back and hips caused by Fibromyalgia and muscle tightening in my back.

A sitting disability occurs when someone finds it difficult to sit or is unable to sit entirely. This is usually due to experiencing pain. You don’t have to have any other chronic issues or disabilities to experience a sitting disability, however, many people can experience both chronic illness and sitting disabilities simultaneously. The term ‘sitting disability’ is unfortunately not well known or recognized. I myself didn’t know this term until early this year, despite me having had trouble sitting for over 12 years. Issues with sitting are often an invisible disability, which can mean it’s easily overlooked by people who don’t experience it. Sitting disabilities can have many causes, mine is the result of pain in my lower back and hips caused by Fibromyalgia and muscle tightening in my back. 

Whether I'm sitting on the couch, traveling on public transport, going to the movies, or sitting in class; I have to be mindful of how my body is positioned and how I can minimize my pain levels, otherwise my back could end up being in serious, constant pain for the rest of the day and I can end up very exhausted.

I do not consider my sitting disability to be on the severe end of the scale by any means, yet it impacts every second of my life. Whether I’m sitting on the couch, traveling on public transport, going to the movies, or sitting in class; I have to be mindful of how my body is positioned and how I can minimize my pain levels, otherwise my back could end up being in serious, constant pain for the rest of the day and I can end up very exhausted.

Mobility Issues Are Not Cancelled Out By Sitting Disabilities

Things become even more complicated when you have a sitting disability as well as issues standing and walking. It can be difficult having to explain to people why you have difficulty both sitting and standing for long periods of time, and how one isn’t the solution to the other. For example, I was discussing future career options with someone I knew. They knew I had mobility issues, so they suggested I become a truck driver. They said this was the solution to my problems because I would be sitting for hours on end and wouldn’t have to get up and move around often. As I explained that I couldn’t sit for long periods of time either, this person became more and more perplexed. Likewise, a job where I’m walking around a lot and barely sit wouldn’t work for me either. I’d have to find a way to balance the two and minimize my pain levels as much as possible.

Experiencing a Sitting Disability Throughout Childhood

When I attended primary school, we used to have to sit on a wooden floor in the gym for assemblies. This would cause me a lot of pain in my lower back and hips as well as numbness in my legs, so I started sitting with a cushion between me and the floor instead of directly on the hard floor between the ages of 9 and 12. This made sitting on the floor a bit more bearable but didn’t take away the discomfort. Sitting on a cushion when other students did not made me different, which as you can imagine left me open to teasing and bullying from my peers. Even once I entered high school and no longer had to worry about sitting on the floor as often, students who attended the same primary school as me would point at me and say things like “that’s the girl who sat on a cushion” with a malicious undertone.

When I attended primary school, we used to have to sit on a wooden floor in the gym for assemblies. This would cause me a lot of pain in my lower back and hips as well as numbness in my legs, so I started sitting with a cushion between me and the floor instead of directly on the hard floor between the ages of 9 and 12. This made sitting on the floor a bit more bearable but didn't take away the discomfort. Sitting on a cushion when other students did not made me different, which as you can imagine left me open to teasing and bullying from my peers

Road trips were also (and still are) very difficult for me. Along with family holidays, there were also school trips and sports camps. While my family quickly learned how to make road trips easier for me (and therefore the family as a whole) by doing things such as taking breaks more often and letting me have the seat with the most room, school, and sports trips were a lot less flexible since there were other kids and adults to worry about. For these situations, I made sure to have a pillow/cushion on me for lower back support and my pain meds in an accessible place.

Public Transport

For people with severe sitting disability, public transport such as trains, busses, and planes can be practically inaccessible. 

For people with severe sitting disability, public transport such as trains, busses, and planes can be practically inaccessible.

I travel two and a half hours each direction by public transport to attend university across the city. As you can imagine this is not ideal for someone with a sitting disability. In order to get through the trips with as little pain as possible, I try to sit on the right side of the bus or train so I can lean against the wall for support. Then if the seat next to me is free I tuck my right foot up under my left thigh on the seat, which can take up a bit of the seat next to me. This is the position that causes me the least amount of pain. I try to be as mindful of the people around me as possible, so if the train or bus is full I’ll sit normally, despite the near agony it causes me. Despite the fact that I need to sit in this position in order to be able to get through the day, I often receive dirty looks, and sometimes the train managers will tell me to get my foot down. Whenever this occurs, I comply with the train manager because it seems like that will take less effort than trying to explain my situation to them. However, whenever I do sit in a “normal” position for any length of time, I end up in a lot of pain and become shaky and tired. It doesn’t go away once I stand up, either. So, I can end up feeling like that for the rest of the day.

I’ve found the only time I haven’t received any ridicule for sitting with a leg on the seat is when I had an ankle injury and had a moon boot on. The moon boot acted as a visible symbol that I was having trouble sitting in a specific position, whereas without it people assume there is no issue, which couldn’t be further from the truth.

At University

After traveling for two and a half hours, 90% of which is spent sitting, my back is often already stiff, sensitive, sore, or all three. Sitting in classes that are over an hour can be very difficult, especially if the chair is uncomfortable and has limited lower back support. This can also be an issue during exams. However, I’m very lucky to have the support of my university’s Disability Services, who do their best to provide me with supportive chairs in lectures and exams. These supportive chairs allow me to sit longer with less pain, however, do not take away the pain and exhaustion completely.

One of my favorite spaces at university is a room in the library which has bean bags. If I arrive at university early or am waiting between lectures, I enjoy sitting on bean bags because I can just sprawl there without having to support myself, which keeps the pain and exhaustion at bay.

Dealing with a sitting disability on its own is hard enough, however, it can become even more difficult when you have to deal with chronic illness on top of it. Sitting disabilities can make everyday activities become difficult and can make tasks that are supposed to be simple to become extremely tedious. While disability activism has and is making great strides in our society, there isn’t much awareness surrounding sitting disabilities, though I’m sure many people experience it in one form or another.

I’ve read a lot of horror stories about the way people with sitting disabilities have been treated in public and it hurts my heart. I’m lucky enough to not have experienced anything serious. Yet, I hope the spreading of awareness around sitting disabilities will prevent such conflicts happening in the future.

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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The Impossibility of ‘Get Well Soon’ – Vaive’s Spoonie Story

One of the hardest things about living with chronic illness(es) is that it’s exactly that: chronic. You know it’s never going to go away, and while you may have periods of time where you feel slightly better, eventually it gets worse again. There is no break, no pause button, let alone a cure. Sometimes those things that help can be exhausting and equally painful, such as surgeries and therapies. It consumes your entire life, and it can be difficult to learn how to not let it take over your life. 

Everything Changes

Around ten years ago, my diagnoses started to roll in – although my symptoms had been coming and going for much longer. A brief summary of some of my conditions – and sadly, I will most likely forget a few – include: 

  • Fibromyalgia
  • Bronchiectasis 
  • Chronic migraines 
  • Long QT Syndrome, SVT (Supraventricular Tachycardia), Incomplete RBBB (Right Bundle Branch Block) 
  • Functional GI Disorders and a stomach hiatus hernia
  • Cervical spondylosis, protruding discs, scoliosis
  • Hypermobility and a grade 2 ATFL (anterior tibiofibular ligament) sprain/tear

Lately, my neuroradiologist has started to look further into all of my problems and has also asked me to look into EDS (Ehlers-Danlos Syndrome) and POTS (Postural Orthostatic Tachycardia Syndrome). His idea is that diagnosis wise, I have them, but it is my body and only I can determine how accurately these encompass my symptoms. 

Lately, my neuroradiologist has started to look further into all of my problems and has also asked me to look into EDS (Ehlers-Danlos Syndrome) and POTS (Postural Orthostatic

Someone like myself who has multiple diagnoses that require a lot of specific treatment and care is referred to as a person with ‘complex care/health needs’. This makes life a little harder, as my doctors don’t really communicate much with each other and I end up having to point out that I can’t have certain medications or do certain things because of other conditions. While I have gotten used to it, it can be difficult when I’m particularly struggling with one thing and am tempted to just go ‘oh well I’ll risk the heart attack and take these just to be in less pain’! 

Dancing Through Life 

When I was younger I loved performing. In fact, I still do – my dog frequently enjoys my performances of various songs from musicals I love when I have the house to myself. Up until I was sixteen I did a lot of dancing, and it dominated a lot of my time, which I loved. I like to be kept busy! I also did a lot of acting and singing and playing the piano. The ATFL sprain, which was initially thought to be a simple, minor sprain, put a stopper to that (along with the beginnings of regular palpitations and arrhythmia). 

When I initially stopped dancing, I truly believed that in a couple of years time I’d get back to my normal self and start dancing again. I was also having a lot of regular back pain, which doctors always brushed off. Who doesn’t have back pain these days? When I was at drama school, the pain just wouldn’t go away and I always seemed to be unwell. Eventually, this ended with me in hospital for a week, using a Zimmer frame to slowly get around, and I quit drama school (I didn’t feel too bothered by this) and my job working on the London 2012 Olympics ceremonies. 

In September 2013 I went to University. While there, although I continued to be in constant pain, had at least one million chest infections (alright, one million is a mild exaggeration), and a minor surgery, I managed to do 2 shows a year. One was a small stand-and-sing show, and one was the end of year cabaret. I absolutely loved doing those, despite the first two years I did the cabaret shows with a torn rotator cuff and sprained ankle, respectively. I’m really happy that I managed to do them, because I absolutely love musicals and they made me so happy! I also did a lot of yoga at university, and I’m so glad I did that while my body was still capable. 

I managed to do 2 shows a year. One was a small stand-and-sing show, and one was the end of year cabaret. I absolutely loved doing those, despite the first two years I did the cabaret shows with a torn rotator cuff and sprained ankle,

The Winner Takes It All

After leaving university I lost a lot of who I was, but I forced myself to keep being that person. I worked full time at a restaurant for a year, where I had been part-timing for two years while I studied. I went on tour for three months. I worked for a catering agency for a few months, taking every shift possible without regard to the fact that all humans need a day off sometimes. I forced myself into shoes that hurt my feet, to carry plates with hands that had lost all sensation and pick up crates of drinks with searing sciatica. I toured guests through famous sets with a grin on my face, spewing knowledge through the brain fog. 

That year taught me so much, and although I did have a lot of fun and have so many fond memories – I wouldn’t put myself through it ever again. My body has suffered so much from the time I spent pretending I was still okay, doing jobs I was good at despite knowing that I was damaging my health. Perhaps I was in denial about how bad my health really was, hiding it under the smiles and appearance of an able body? I could carry the heavy things and walk all those stairs and work fifteen hour shifts – by sheer force. 

My body has suffered so much from the time I spent pretending I was still okay, doing jobs I was good at despite knowing that I was damaging my health

Who benefited from all of that? Certainly not me. Sure, I earned decent money and got to go on great holidays and buy nice things. But ultimately, that didn’t help me. Having money didn’t make me less ill. It helped with purchasing things that I need, but I barely had the time to use them since I was always at work. Bubble baths were my savior. I somehow managed to go on dates, meeting for lunch or dinner before I had to go to work, applying eyeliner to distract from my tired eyes. Obviously, that fizzled out after a few months. I no longer had the energy to go for lunch or meet up or do anything except get home and sleep until I had to work again. People were always telling me ‘I’m sure you’ll feel a bit better when you’ve got some rest’ – but I neither believed them nor had the time to rest. I knew my body didn’t have a ‘get well’ mode anymore, so I didn’t stop. 

Until I went to my parents for the Christmas holidays and actually had consecutive days off. I was exhausted. I knew then that something had to change. I could not continue forcing my body into these extremes, and wasting time that should be spent with family and friends desperately trying to recover from the pain by myself. I suddenly realised I was losing far, far more than I was attempting to gain. 

Me and the Sky 

In January 2018, I started to work at a special needs college through an agency, having wanted to do something different. I had worked with children and young adults with disabilities for around four years by then, so I was really happy to be in this setting. Although I had spent my entire life vowing never to teach, I quickly started to enjoy doing this job. I have worked in three different classes, and have been the teacher for all three at this stage – something I never thought I’d do! While the job is definitely stressful and exhausting, getting to push the boundaries of what society limits young people with learning difficulties and disabilities into is incredible. 

Teaching and supporting young adults who have had barriers constantly put in place opened my eyes up about my own way of living with chronic health conditions and disabilities. When I take these students to their work placements, or see them achieve something they couldn’t do a year ago, I realise I need to have that level of advocacy and encouragement for myself. If I am telling people to use their mobility aids, or finding adaptive equipment so they can make themselves a drink or a sandwich, why have I been ignoring the fact that I ought to be doing this too? I have this knowledge and ability to teach people how to do useful life things, yet I am not doing these same things for myself. 

It’s strange being able to work but not being able to do things like wash my own hair on a regular basis. I suppose I put all my energy into doing my job, and every so often I’ve got the energy to make myself dinner after work – although more often than not, I end up putting something in the oven while I shower. Usually with chips as a side, or pasta on a better day. But mostly, I am grateful for the change to, for a few hours a day, box up my own problems and focus on doing my job – because the job certainly requires a lot of my attention. Of course, I need breaks and I need the occasional time out for a migraine, or I wear slippers all day because my feet are too sore for shoes. I am aware that one day, maybe sooner than I’d like, I will not be able to do this job. This is only something I have recently accepted, and am working on being okay with. For all I know, that could be this year – or it could be twenty years from now. 

Being able to work with complex care needs is (aside from a blessing and an extra load of stress) almost like being able to ‘do it all’ – and yet it’s far from it. If my colleagues are exhausted, stressed and in pain, what does that make me? Yet I’m fortunate to have good support at work – aside from having on site nurses for the students and a safe place for my medication, we have an Occupational Health nurse who helps with risk assessments and work adjustments/advice to management so that I can do my job safely and effectively. Without this, it’s unlikely I’d be doing this job. 

Mama, I’m A Big Girl Now 

We can all agree that twenty six is definitely an adult age – although I, along with most of my friends, still nervously laugh at the idea of being an adult. Responsibilities? Doing things? Earning money? Saving money? What on earth was wrong with just going to school for a few hours a day with your friends and then doing the fun things with some pocket money you maybe had to wash the dishes to earn? Either way, it’s an adult age, whether I like it or not. 

I spend a lot of time at my parents’ house – despite the rent I pay for my own apartment (although at the time of writing I don’t have my own place thanks to a horrible experience with awful property management and a collapsed ceiling). Sometimes this is by choice because I do like to see my parents and my dog. Especially my dog! Her name is Holly and she is the most loving staffie you will ever meet. Anyway, I spend a lot of time at my parents’ house, but not necessarily by choice. 

I spend a lot of time at my parents' house - despite the rent I pay for my own apartment

Going to my parents’ house, while a long drive from work, means there is dinner for me at the end of the day where I’d be too tired to make it myself. It means somebody can wash my hair, and pick up prescriptions when I’m too exhausted to do it myself. I spent about two months recently commuting after leaving my apartment, and it was both exhausting and a blessing. I would not do it again though. 

Like most mothers, mine is very protective, especially what with me being so unwell. Every so often she tries to sway me to just stay here where I can be looked after, and I think this is something many with chronic illnesses face. I know some people do move back to their parents because they cannot handle living alone with the state of their health – and have the same push of benefits and drawbacks. Nobody really wants to still be living with their parents in their twenties, no matter how much you love them. Despite being unwell, we do have our own lives and like to do things our way. My agreement is that I’ll get help, such as hiring a cleaner and see if I can get somebody to assist me with things like washing my hair, and do online grocery shopping rather than drag myself around a store. I hate that I can’t do these things for myself, but it’s important to accept that in order to live independently I will need support with some aspects – and that’s okay. 

Who Lives, Who Dies, Who Tells Your Story

I am so incredibly fortunate for my support system. From that perspective, I really lucked out. My family, friends and colleagues are understanding, supportive and excellent advocates. Whether it’s making me a cup of tea or taking me to a hospital appointment, or accepting that meeting up will involve me lying on the floor with a hot water bottle, they have never once complained or questioned things. Even at Christmas, when my family all flew in and I spent most of my time in bed because I was so unwell and couldn’t do anything on Christmas Day. 

My little circle of close friends have known me for twelve years now, so they’ve really been on the whole journey with me. I still do things I love when I can, and having a wheelchair has definitely helped with that recently. It meant I could go to the beach with them, where they wanted to walk around the lanes and I knew I’d struggle. It also means when I have a low energy day, I don’t waste it on forcing myself to walk around somewhere and then paying for it big time later. It’s life-changing. But they also know I’m stubborn and will climb cliffs with them even if I have to crawl down them later, just so I’ve done what I love doing. 

I’m stubborn and will climb cliffs with them even if I have to crawl down them later, just so I’ve done what I love doing.

I only recently became more open about my health with everyone – probably only the last two years did I start to talk about it properly. Interestingly, people always end up coming to me and saying that their friend or colleague has something similar and give me a suggestion (certain massages or things like CBD oil) or say they were able to advise someone else with something I had told them. My mom even discusses me with her patients! Even though I don’t know these people personally, it gives me a further sense of extended community support. I’m not alone in this. 

‘Get well soon’ may be an impossibility, and that’s not the easiest concept – no matter how often we say that it’s fine. Part of me will always miss the ‘old me’ who could do everything that I no longer can – but I also love the ‘new me’ who perseveres through every single day and discovers more things that I am capable of. Turns out, I love to crochet (except when it dislocates my fingers) and I still love to sing and play the piano when I can. I love that I have friends who enjoy meeting up for a cup of tea, or drive over an hour to my apartment for takeaway and movie night. My best friend came all the way down from Manchester and all we did was sit on my parents sofa watching many episodes of Friends and a meal out. You guys are the best friends this broken little blonde could ask for. 

The online chronic illness community is also incredible – I recently posted a story about my ovarian cysts, which I knew little about as the doctor didn’t explain them, and suddenly everything was so much clearer. I felt less alone, less like I was in my own corner of impossible pain. I love being part of the Unchargeables team, sharing my journey on Instagram and getting to talk to fellow warriors every day! 

Being unwell has almost consumed my life, but I will continue to resist it taking over every aspect of it. Whether it’s the occasional beach walk, dislocated fingers from making pies, or doing my job with an ice pack tied to my head – Vai is still here. Sure, I’m not getting any better – and I will have days where I feel ready to give up. I have days where all I can do is lie in bed doing nothing because I’ve lost all motivation. But the time comes around where I draw on my eyebrows, put on my big hoop earrings, and continue to fight. Sharing my story has helped me come to terms with many things and a sounding ground for new and old problems. 

About The Author

Vai is Lithuanian who has lived in England since the age of 2. She has a love of theatre and performance (she danced semi-professionally in her teens) and has a degree in Drama. She discovered her passion is in teaching SEN college students and supporting young people with disabilities. Vai has been diagnosed with several different chronic conditions and thinks it’s important to share her experiences of living with chronic illnesses to support others going through the same thing.

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To The People Who Think I’m Not “Independent” Enough (I’m Trying My Hardest).

Amy-Clements-To-the-People-Who-Think-Im-Not-Independent-Enough

As a young adult with chronic illness, I have received a lot of snide comments from people about their perception of my lack of independence. I also find that I receive snide looks when I let it slip that I require help with things that other people may not.

Amy-Clements-To-the-People-Who-Think-Im-Not-Independent-Enough

These snide comments or looks can come from anyone; whether it be family, people close to me, medical professionals, or even complete strangers. Independence can be difficult to retain and maintain when you have a chronic illness, and it doesn’t help when people point out that they think it’s lacking, especially if your independence is one of your insecurities 

Unsolicited Outside Opinions.

I recently saw a post online saying that the only way to help someone with chronic pain is to NOT help them at all. Apparently, if you do things for someone with chronic pain, they aren’t going to want to learn to do those things for themselves.

As someone with Fibromyalgia, I find this assessment extremely flawed. Sure, it may be accurate for those recovering from an injury or surgery, however, it is certainly not accurate for those with chronic illness. For many people with chronic illness, there is no recovery.

Sure, symptoms may become better managed, however, they may never go away. So, refusing to offer someone help when they do need it just because they may not need it in the future seems pretty illogical to me.

This isn’t the first time I have encountered people with this kind of thinking in my chronic illness journey. When I was about 13, my mother was told by an intern psychologist that the reason I didn’t do things around the house that ‘normal’ kids would do, such as packing their own lunch every single night or fetching dinner from the kitchen, was because I simply didn’t want to.

My mother was told that I didn’t struggle to move, I just had behavioural issues and lack of motivation. This obviously wasn’t true. My parents didn’t listen to this person, however, because they saw the slow progression of my condition. They saw the nights I laid curled up in a ball, whimpering or crying in pain, unable to move.

They saw how I became more and more dependent on my crutches (I’ve now switched to a walking cane) because I was in too much pain to bear my own body weight. I’m so glad my parents did what they knew to be right for me, as it was only with their help that I was able to make it through high school without becoming more overcome with fatigue than I already was.

Moving Out of Home.

Moving out of my parent’s home was a massive step for me when it came to gaining more independence. It felt good because I was doing something completely for myself. I searched for flats, I wrote up budgets and did everything else that came with planning to move.

It all seemed to be coming together perfectly. It was during the first few weeks of moving that I received my first reality check. Moving my stuff from my parent’s place was both time consuming and extremely exhausting. I needed a lot of help and my pain levels skyrocketed, both from the physical task of moving as well as the stress.

Once I was finally settled, I realised I was drowning in all the housework. I was pushing myself to my limit and not really getting anywhere. It wasn’t long before I realised that no matter how hard I tried or wished it was so, moving out of home didn’t make me require help any less.

It really struck me one night when I was lying in bed, having a pain flare, wishing I had the energy to get up and get my medication. I was far too sore to move, and I didn’t have anyone to ask to for help like I would have at home. I felt extremely lonely, and I cried myself to sleep that night.

Relying on My Mother for Care.

Despite the fact that my mobility is hindered due to my chronic pain, I do not fit the criteria for a caregiver. I was refused carer hours when I applied for it after my 18th birthday, and again after I moved out, despite the fact I had received carer hours prior to my 18th birthday.

They apparently don’t provide help to people over 18 who don’t have a diagnosis that is on their checklist, no matter what the person’s physical ability is. At one stage I was even told: “well if you were diagnosed with [insert diagnosis with similar symptoms to mine] we’d be able to help you.” 

As a result of this, despite me not living at home, my mother drives me around, does my washing, and helps me tidy my room. I feel bad for needing her help because she has two boys to look after, both of which have autism as well as one of them having a Chromosome Deletion.

However, I have no choice. I am in a place where I simply can’t do these things for myself. Believe me, I’ve tried. Just this morning I started tidying my room before my mother arrived to help hang up clothes, and by the time I was finished, I was shaking with exhaustion.

I could barely hold myself up in a sitting position, despite the fact that all I had been doing very little activity. My mother is honestly my hero. I wouldn’t be able to function without her.

Not long after my application for carer hours was denied after moving out, I was talking to someone about how I had been refused help and how I was frustrated. When I tried to explain my situation, they replied: “well, maybe it’s because they want you to be independent.” I was shocked.

This implied that I was choosing to be dependent and that I could just switch my dependence off. I was torn between wanting to laugh and wanting to cry. 

I would be fully independent if I could.

People with chronic illness don’t ask for help ‘just because’. They ask because they need it. This idea that the chronically ill should be left to do everything for themselves is extremely harmful.

Sure, there are the people who have chronic illnesses who are fully independent, and I respect them for it. However, not everyone can manage that. One thing that I don’t think people that haven’t experienced chronic illness (first or even second hand) understand is that if I could do these things for myself, I would.

I’d have my driver’s license, I’d be living in a student apartment on my own all the way across the city, and I’d be studying full-time, doing the course I dreamed about throughout high school that I had to give up due to my health. 

The one message I want to convey in this article is that my dependence is not a choice. It’s me doing the most that I can.

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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Breastfeeding and Chronic Illness (My Personal Experience)

My Experience Breastfeeding with Chronic Illness

During this period of spreading breastfeeding awareness, I want to share how breastfeeding while experiencing chronic illness has affected me; I guess you could say I’m not the average mom. Depending on who I asked, I was told that breastfeeding was either easy or difficult. When I gave birth to my first daughter on the 20th of June 2017, I thought I’d take to breastfeeding with ease since I had watched a ton of videos and attended breastfeeding classes. This, however, was not the case.

After my daughter R was born, I struggled with getting her to latch on and instantly felt like a failure. I decided to consult a lactation consultant to come in because I did not want to give up. When she came in, we had to discuss what was going on. We discussed that R was a “lazy baby” and sucked on her wrist throughout my whole pregnancy.  We had to used SNS (supplemental nursing system) and a nipple shield to convince her to latch. I cried many times throughout my stay because I had to use the SNS twice with the nipple shield and some formula just on me to get her to taste it another time. I remember feeling bone tired while R was nursing for hours at a time in the hospital, with the nurses coming in and badgering me to feed her more often.  During those times it had felt like I had just finished nursing her, yet they would come in and tell me I wasn’t nursing her often enough.

My Experience Adjusting to Breastfeeding

During the first month at home, I was glad it was my summer break and that I did not have to stress about going back to work.  I cried many times during the day and night because my fibromyalgia was flaring up and it hurt for R to be nursing for long periods of time.  I struggled mentally at this time because of my PPD/A and I was struggling to build a relationship with my daughter. I never have experienced such pure and utter exhaustion like I did with struggling to breastfeed, experiencing a loss of sleep, and my chronic illnesses flaring up.  I wanted to give up many times, and hearing some others just tell me to use bottles so that they could feed R didn’t help with my mental state. I also had people tell me not to breastfeed in public and to isolate myself whenever I needed to feed her. I found it was hard to carry her when I needed to walk with my service dog and just trying to find a place to nurse without people tripping on the dog or walking on me was difficult.  

The Exhaustion of Adjusting to Breastfeeding with Chronic Illness

My husband has been a huge support, along with my parents, for both our girls because they will take my girls and let me sleep in in the morning. In the newborn stage (0-3 months) my girls woke up often to feed, but it happened around the same time throughout the night.  No longer experiencing this interruption of sleep predictability helped me to cope and not be as grumpy or frustrated with my sleep being interrupted.  

The Stigma that Surrounds Breastfeeding

Breastfeeding can be difficult for anyone, not just people with chronic illnesses.  There is a stigma with breastfeeding that goes around along with a lot of misinformation. Unfortunately, there is a huge push for anyone who is breastfeeding to go and nurse in another room, bathroom, changing room, etc…  There seems to be a huge push for formula and bottle feeding because it’s “more convenient” and allows others to feed the baby to “give mom a break”. There are even suggestions to just pump and bottle feed, but that is not an easier option because every time that the baby feeds, mom still needs to get up and pump, then take care of the pump parts and put the milk in storage.  There’s a lot of work no matter what, and it can be a struggle. 

Medication and Breastfeeding

Having chronic illnesses and making the choice to breastfeed will limit your options concerning medication.  Even though you are not pregnant, you still have some limitations or weird changes of limitations on medication.  After having my second daughter W, my body went into a flare with lupus and fibromyalgia. I discussed with my doctor what we could do, and he put me on a new medication that would not affect my daughter since I am still breastfeeding.   I had to go back to my doctor this past week because the medication was working, but not at a therapeutic level.

Medication and Breastfeeding When You Have Chronic Illness

He decided to up my medication again by 0.5mg (small increases as needed because everybody is different) and then discussed that I am still inflamed in my ears but the fluid in my inner ears was finally gone.  We had initially wanted to put me on gabapentin, however, after my doctor went and looked up to see if it would be safe, he and I decided that we could not take the risk. The medication I was put on instead was one that claimed a minimal amount goes through the milk to the baby. We would have to monitor W as well as myself to make sure no harm or side effects were occurring. 

It is a “safe” medication, but in the “if the benefits outweigh the risks” manner. I was slightly devastated because my pain is coming to a point where I am losing more sleep than I already was to begin with. Pain can also affect your libido, patience level, etc… We have now gotten to where we need to focus on herbs if possible, to help with my nerves since most medications for pain are not recommended for long periods of time while breastfeeding.  If my pain gets worse or even more unmanageable then we will revisit and evaluate what we need to do as our next step.

For now, I am going to stick with breastfeeding because it is beneficial to my daughter. My daughters both do not respond very well to formula and I would have to special order one from out of the country, which my insurance will not cover. When I consider the cost, benefit and time (easier/quicker to breastfeed than prepare a bottle), I am keeping everything in mind and staying in contact with my doctor to make sure I am not sacrificing too much of my physical, mental, emotional, and spiritual health.  My experience is going to be different from anyone else’s experience, and I am always a “fed is best” advocate. I will never advise someone to compromise their own health when their child needs their parents alive more than anything.

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Is Using My Cane A Mockery Of Old People?

A letter to the Elderly Lady who called my cane usage "a mockery of old people"

Coming to terms with the fact that I needed to use a walking cane was initially very difficult for me. After all, I wasn’t old, and the stigma around walking canes is that they are only for the use of the elderly. I was 16 years old and barely able to walk half the time. The pain of Fibromyalgia consumed every minute of my life (it still does), and I was barely getting out of the house besides going to school.

A letter to the Elderly Lady who called my cane usage "a mockery of old people"

The Reasons For My Cane

I didn’t even have the energy to grocery shop, which is something I had always enjoyed helping my mother with. At that stage, I had been coping with widespread chronic pain for about 9 years. I was struggling my way through high school, and I didn’t know if there was any hope for my future, since the pain has done nothing but get worse. My quality of life and self-esteem was almost nil. 

Getting a walking cane changed that completely. I was able to gain back some of the independence that I had when my pain was less severe. I’m now 19 and attending University part-time. I know for sure that without using a walking cane, I wouldn’t be able to cope with the commute to and from campus (believe me, I’ve tried).

My main fear when it came to using a walking cane was that people would judge me, and I’m not going to lie; they did. They still do. Despite what has been said to me, I continued to use my walking cane whenever I decided that I needed it, which was at least half of the time. As I continued to use it, I become more and more confident about it.

Is Using My Cane A Mockery Of Old People?

Now when I use my walking cane as a 19-year-old, I barely think about it unless someone mentions it to me. It’s a part of me, and I need it in order to be able to function in a semi-normal way. Medical professionals I have seen have approved of me using it, and nothing anyone says will change that.

In this article, I’m going to outline some of the instances where people have voiced their judgements about me using a walking cane, and why I think these judgements are flawed.

Being Accused Of Mocking The Elderly

My mother went to an appointment one morning recently, and in the waiting room a conversation started up between my mother and an elderly lady. My mother is a friendly person, so she enjoys talking to people whether she knows them or not.

At some stage during the conversation, the lady started talking about how there’s a young lady using a walking cane around our town, and how this elderly lady and her friends agree that this young woman is making a mockery of old people.

Is Using My Cane A Mockery Of Old People?

My town is not very big, and everyone knows someone who knows someone. I can confidently say that I’m the only young adult, let alone young lady, in my town who uses a walking cane (that I have seen). My mother had obviously come to the same conclusion because she told this lady that she knew the young woman who used a walking cane.

She told the lady that this young woman was using it for her diagnosed medical condition that she had since childhood, and that she wasn’t mocking anyone. The next day, my mother told me about what this lady had said about me. I was shocked. 

This is the event that inspired me to write this article. I was always planning to write about my experiences using a walking cane as a teenager, however, this gave me both the push and the context I needed.

I didn’t realise that me using a cane as a teenager would bother anyone. I unknowingly, and by no fault of my own, had become a subject of town gossip. And despite me not wanting it to, it hurt me. It hurt me that someone would think such a terrible thing of me when I would never mock anyone for anything that is out of their control.

I would understand if it were children, or even very young adults were the ones being cruel. Having a lack of life experience can result in ignorance. What I don’t understand, however, is grown adults of thirty years or older being so incredibly petty and judgemental.

I can’t wrap my head around it. Having people say these types of things about you can be so incredibly damaging to the self-esteem of someone who is already struggling with chronic illness.

Saying things like this could push someone over the edge, it’s that serious. This isn’t the first, and probably won’t be the last, time that my use of a walking cane has been criticised. 

“Is That [Cane] Really Necessary?”

The first time I walked into my high school’s nurse’s office with my walking cane, I was nervous about the reaction I would get. Looking back, I was right to be nervous. When the nurse on duty that day saw me using the cane, she looked me up and down, scoffed, and said in an amused tone “is that really necessary?”

“Is That [Cane] Really Necessary?"

My friend was with me and heard this too, and I was mortified. I then informed her that my Chronic Pain Team physiotherapist had approved me using a cane instead of crutches and then asked for my medication, holding back tears. Once my mother heard about what had been said, she called the nurse and explained my situation.

While the nurse never made another comment about my cane again, I didn’t feel comfortable around her from then on and I avoided her as much as possible for my final years before my graduation. 

“You Aren’t [Old]”

A month or so ago, I was riding in an elevator at the local train station with an elderly man who also had a walking cane. He was looking me up and down, which is normal for me around older people.

He asked me “why are you using a walking cane? You aren’t my age.” I smiled at him, a bit taken aback, and politely replied “I have a chronic pain condition. It can make it difficult to walk.” I kept it simple, I didn’t want to go into details. He then replied “well I’m old. I’m allowed to use one.” The doors opened just as he finished his sentence, and I exited the elevator thinking about what he had said.

Was he trying to say that only old people were allowed to use walking canes? I didn’t let what he said upset me, I just carried on with my day as usual and kind of pushed it out of my mind. The memory then resurfaced when I was thinking about what was said about me to my mother.

I Won’t Apologise For Using A Walking Cane.

I don’t understand what people have to gain from being so judgemental. It baffles me that someone can have such disdain towards someone they haven’t met or barely know.

Having an invisible disability or illness means that besides any tools or walking aids that are used (such as a wheelchair, a walking frame, or a walking cane), there is no way to tell what I, or any other person with chronic illness, goes through. 

Is Using My Cane A Mockery Of Old People?

I don’t use a walking cane for fun or because I think it’s cool. I use it because I genuinely need it for support when I’m in a lot of pain. I don’t enjoy being a teenager who uses a enjoy walking cane. I don’t the looks of curiosity or disdain I often get from other adults.

However, I will continue to use it because I wouldn’t get through the day without it. I won’t apologise for using a walking aid, no matter what anyone thinks of it. 

Having had a chronic illness since childhood has made my skin extremely thick. It has made me far less mindful of what those who aren’t my close friends, immediate family, or doctors have to say about my health.

Of course, what people say about me does still bother me, otherwise, I wouldn’t be writing this article. However, it doesn’t affect me as much as it used to. I don’t break down and cry when I hear what people say about me, as I would have a few years ago.

My aim with writing my experiences in this article is to spread awareness about young people worldwide who use walking canes due to their health. They do exist, and they certainly aren’t trying to mock anyone. They’re just trying to live their lives, like everyone else. 

Please, if you ever feel tempted to negatively comment on a young person’s use of a walking aid, please don’t. And if you are a young person who uses a walking aid who faces judgement, know that you are not alone.

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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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.