Chronic Pain Archives - The Unchargeables

September 27, 2020October 16, 2020

How to Make Mindfulness Practical When You’re Chronically Ill

Talk of mindfulness is everywhere. You have no doubt heard people recommending mindfulness as a method of coping with all sorts of health issues. While it’s no ‘quick fix’ or ‘miracle cure’, mindfulness truly can be extremely beneficial for those of us with chronic illness, and it has proven results!

The benefits of mindfulness for chronic illness

Mindfulness is all about being present in the moment, which promotes a sense of calm and relaxation. This alone can provide a feeling of comfort and relief when we’re going through a lot in our lives. This 2019 study defines the practice of mindfulness as: “intentionally observing the body and mind nonreactively while embracing the individual experience and accepting things as they are.”

When you live with chronic illness, you are often in a prolonged state of ‘fight or flight’, which means that your stress response is overworked. Your body and mind are not designed to handle this prolonged stress, which can understandably take its toll. Stress can contribute to chronic pain and other chronic symptoms. Thankfully mindfulness can markedly reduce stress levels, easing chronic symptoms and reducing the negative effects that come with being in a state of stress for so long.

It’s not only stress that mindfulness can help with: regular mindfulness practices can help us to gain greater control over our emotions and enable us to regulate them more effectively. This creates a more stable mood and an enhanced sense of wellbeing. This increased emotional regulation can even help with mental illness (such as anxiety and depression) which so often accompanies chronic illness.

The benefits of mindfulness for chronic illness

Often the experience of living with chronic illness can create a sense of fear of doing something that may worsen your symptoms (which is completely understandable). This fear can lead to fear-fuelled avoidance, meaning we avoid certain activities in the hope we can avoid a ‘flare’. Unfortunately, this fear-fuelled avoidance can actually worsen symptoms over time. Mindfulness can help us to overcome those fears and deal with them in a calmer, more constructive way.

When you live with chronic illness, it can be incredibly hard to sleep. Often even when we do sleep, it’s non-restorative and restless, meaning we don’t feel much of the benefit. Mindfulness can help with more restful, regular sleep. Mindfulness can even help us to be more self-compassionate and build our confidence, as well as helping us to feel more motivated to self-manage our chronic illness.These are only a few of the benefits of mindfulness for chronic illness!

Making mindfulness practical:

Now that you know just how useful mindfulness can be, you might be wondering how to get started. It can be tough to know how to engage in mindfulness in a practical, realistic way. Let’s go through some tips to help you introduce mindfulness into your day to day life.

Figure out what type of mindfulness works for you. There are so many different types of mindfulness such as meditations, visualization and guided imagery, mindful movement, body scan meditations, progressive muscle relaxation (PMR) and more! This variety is great because it means that if you try a style of mindfulness and discover it’s not for you, it doesn’t mean mindfulness can’t work for you! Take your time to do some research and experiment until you find what feels best for you.

Start off with 5 minutes at a time. You don’t have to dedicate lots of time to mindfulness to feel the benefits, especially not when you’re just starting out. Starting out with 5 or 10 minutes at a time can be a sustainable way to introduce mindfulness. You don’t even have to do this every single day to gain the benefits (although if you can this would be fantastic)! 2 or 3 times a week would be a great way to start out. Being as consistent as possible is key. You don’t need any special equipment to get started. Find 5 minutes in a quiet space where you won’t be disturbed or distracted, and you’re ready to go.

Don’t worry about sitting in a specific position. You don’t have to sit with your legs crossed in an upright position for mindfulness to work. Don’t worry if that simply doesn’t work for you. There’s no magic pose that you have do to gain the benefits of mindfulness. Sit or lie down in any position that is comfortable for you.

If you feel pain or other symptoms, don’t overthink it. Let’s face it, it’s likely that while you’re sitting and trying to quiet your mind, you might experience pain or other symptoms of your chronic illness. That’s ok. Don’t worry! Mindfulness is about being present in the moment and engaging your senses. If you are experiencing a symptom, feel what you’re feeling as part of the present moment. Try not to overthink it or worry about it. That sounds easier said than done, but with practice it can get easier. Of course that might not always be possible. If you’re having a flare or a severe symptom, you might need to stop your mindfulness practice for the time being. That’s totally valid too! You can always try again later. It doesn’t mean you’ve failed or that you can’t practice mindfulness.

Find guided mindfulness resources. You don’t have to sit and meditate alone. There are plenty of guided mindfulness sessions online you can access (and many for free!) which will guide you through a meditation step by step. Some people find guided audio or video mindfulness sessions really helpful because it gives them a voice to focus on and clear, relaxing guidance to follow.

Find guided mindfulness resources to help you be mindful.

Consider mindfulness courses and mindfulness therapy. There are mindfulness courses you can engage in which can help guide you through learning mindfulness skills. You may be able to find some in your local area which you could attend in person, or you could find an online course or app. Mindfulness is often integrated into other types of therapy to treat chronic illness and mental health issues. You could ask your doctor, specialist or therapist if this is something you could involve in your sessions. Alternatively, you could seek a specific mindfulness therapist. If you do so, ensure they are properly qualified

Utilize mindfulness in bed to help you sleep. If you struggle to sleep, you could practice mindfulness a little while before you go to bed at night to get you in a relaxed mood. Another great way to utilize mindfulness to help you sleep is to listen to a guided mindfulness session in bed to help you drift off. Progressive muscle relaxation (PMR) is really great for this purpose because it takes you through relaxing each area of the muscles in your body. This can ease muscle pain as well as encourage relaxation.

Consider trying mindful movement. For some people, sitting or lying still and trying to relax simply doesn’t work. This is where mindful movement can come into its own. Mindful movement typically involves slow flowing movements. While you’re doing these movements you pay attention to your breathing, to how your body feels and to what is happening in that moment. Yoga and tai chi are types of mindful movement. You can even make other exercises mindful, such as going for a mindful walk. When you’re walking, you might pay attention to how your feet feel as they are hitting the ground. You may notice what sounds you can hear and what you can see around you for example. You’re focusing on exactly what is happening in that moment on your walk, not on the past or the future. Mindful movement brings all of the same benefits of mindfulness, as well as incorporating the benefits of exercise and activity for those with chronic pain. It’s all about what works for you!

Make daily tasks mindful. We don’t always have the time or energy required to dedicate to setting aside specific time for mindfulness each day. However, as you learn the skills of mindfulness, you can make daily tasks mindful that you would be doing anyway. As we learn to pay attention to what is happening in the moment, (if our mind wanders we simply bring our attention back to the present) we are being mindful. Over time this can become a positive habit, and will feel less like a conscious effort. This study explains that, “repetitive attempts to increase state mindfulness leads to an incremental escalation of the general tendency to be mindful in a more automatic manner.”

An example of doing daily tasks mindfully could be eating a meal mindfully. Take your time to focus on how your food smells and looks before you eat it. As you taste it, take the time to really take notice of the flavours, the movement of your mouth and tongue, and the feeling of enjoyment you may experience. You could make taking a shower mindful. Pay attention to how the water feels on your skin. Take notice of the smells of your shower gel or soap. Think about what colours you can see (maybe the bottles in your shower or your sponges are a certain colour).

Be kind to and encourage yourself. If things don’t go to plan, for example if you can’t quiet your mind or you miss a week of your mindfulness practice, don’t be too hard on yourself! It doesn’t have to be perfect. Remember you’re learning a skill and that takes time. Encourage yourself and be kind to yourself. If you try all sorts of different mindfulness techniques and are just finding that it’s not for you, that’s completely valid too. There are plenty of other chronic illness management options that you can explore. It doesn’t mean you can’t try mindfulness again later down the line if you want to, so don’t worry!

Mindfulness is about you!

Fundamentally, mindfulness is about what works for you. If you can find ways to integrate mindfulness into your life, it can be well worth the effort and have wonderful benefits. Remember that there’s no specific ‘right way’ to practice mindfulness. It’s all about what works for you and your life.

About the Author:

Ann-Marie D’Arcy-Sharpe is 33 years old and works as a freelance writer and blogger. She lives with bipolar disorder, fibromyalgia and arthritis. She writes for Pathways Pain Relief, a chronic pain relief app and blog. The app is created by pain patients and backed by the latest pain science. The app uses mind body therapies to help pain patients achieve natural, long lasting pain relief.

July 11, 2020July 5, 2020

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.

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.

July 4, 2020July 2, 2020

Marie’s Chronic Illness Journey: Finding My “New Normal”

Marie’s Chronic Illness Journey: IBD and Crohn's disease

IBD, Perianal Crohn’s Disease, Abscess, Fistula complications, Sepsis, Crohn’s Arthritis, Pyoderma Gangrenous, DVT, blood clotting disorder, low blood pressure, Tachycardia and an irregular heartbeat with palpitations, Migraines, Body Dysmorphia, Depression, Anxiety, Agoraphobia, PTSD, hair loss, insomnia, self-isolation.

No, you didn’t just read a list of side effects from a newly FDA approved medicine. What you did read are just some of the things I have to battle with and continue to overcome daily. It’s unfortunate, but I can continue on with that list for quite a while. Being diagnosed with a chronic illness at 27 is utterly perplexing, as I am sure it is at any age. You live this life and you have your plans, goals, aspirations, and, at the flip of a switch, that all changes. I was completely blindsided and continue to be with every new diagnosis.

Finding my “new normal”

Once I was diagnosed, I would hear from other IBD patients and medical professionals about the importance of finding your “new normal”; a phrase I found to be so true and necessary, as I myself was discovering what that would mean for me. My struggle came into play when I realized no one around me seemed all that open about the process that preceded this new life I would be creating for myself. With the daily challenges associated with chronic illness, figuring out how this new life looks can feel as if you’re driving at night in a rainstorm, with your headlights off, just praying you’re on the right side of the road.

I had never really been exposed to the chronic illness lifestyle. Even though it has now been 2 years, the chronic part is still something I struggle with regularly. It’s easy to forget that this illness is for life. It definitely doesn’t help when the “able” ask you if you’re better yet. Especially, when after every procedure, that thought passes through your own mind, only to disappoint you again because you know that “better” will never be a permanent option.

I was beyond lost at the beginning of my chronic illness journey. I was scared and I felt alone. I was the only one in my world who could speak my language and everyone was staring at me like I was a circus clown. As if the chronic pain wasn’t enough, I was now facing emotional turmoil as friends, who I considered family, began to drop out of my life. I was left to fend for myself the same instant everything I knew changed; with only a few true friends remaining by my side to help navigate the most difficult challenges I’ve ever faced. True colors began to shine in moments of crisis and I was seeing rainbows.

Highly medicated and awkwardly positioned in my hospital bed, I felt as if I was being tested. I can only describe my time in my post-op, shared-room as a character-building experience. I squinted one eye shut to combat the drug-induced, kaleidoscope vision so I could begin to research how to achieve this “new normal”.

Finding support

I stumbled across the Crohn’s and Colitis Foundation and sent them an email. Once discharged from the hospital and successfully escaping the grips of my home nurse, I managed to make it out to a few events. I started meeting people, people like me, only they were more informed and experienced with their place in their chronic illness journey. It was through these gatherings that I became connected with my mentor, who now is my closest and dearest friend.

We began going to support groups together and she got me to see a psychologist who specialized in IBD. I had a connection with my mentor-turned-best-friend that I’ve never experienced before. I wasn’t aware that relationships like that were real. I finally wasn’t alone on my planet where no one could figure out what I was saying. I was the least lonely I had ever been, and we were in our very own world where we finished each other’s sentences, showed up for surgeries, and answered the phone late at night just because the other couldn’t sleep. We support each other in every aspect of our lives and I slowly began to realize the steps needed to be taken to get to my “new normal”.

It was through our relationship and her perpetual support that she encouraged me to stop hiding behind my fears and do what I love. Out of this came The Lemon Blog, my passion project. The Lemon Blog is a place that supports all abilities and provides encouragement, mentorship, community, advice, an ear to listen, or even a shoulder to cry on when needed.

Starting a blog when coping with IBD and Crohn's disease

I cannot stress enough the importance of having a solid support system. Sadly, not everyone has that available to them, which is why The Lemon Blog has become so important to me. Not only have I made amazing connections with these warriors, but we check on each other regularly, we cheer each other on, offer support when needed, words of encouragement when down, and have some pretty good laughs along the way.

People like Meena at The Unchargables help pave the way for the rest of us and I am honored to be writing this for their site. Thank you for asking me to share my story. I encourage everyone to share their own; you never know who it may help. I’d love to see you over at thelemonblog.com or shoot me a direct message through our Instagram @the.lemon.blog – we’d love to have you be a part of our Spoonie Community and help you to discover you own New Normal.

About the Author:

Marie is a chronic illness warrior who runs The Lemon Blog, which is her passion project. Marie created this blog with the aim of supporting fellow chronic warriors and helping them find their own “new normal”.

April 1, 2020March 3, 2020

12 chronic pain memes

Can you imagine being in pain every single day? I hope you can not.

For those of you living with chronic pain, these memes will be relatable.

The pain scale is very subjective. Somebody who has never had pain before may say they are at an 8, while a person living with chronic pain will measure their 8 at a 5. Because they have lived with pain at level 12. It’s all what you are used to, and what you can compare it to.

Need my sunglasses and a protective shield!

This happy looking little monster is called Penny. She lives with chronic pain too. She tries to make the best of life with her friends in Chargieville, the universe where she lives. There are more creatures like her there. With different ailments, take a peek over here

Chronic pain is invisible, it’s hard that other people can’t see it. But on the other hand, maybe it’s for the best.

Are you tired of hearing about it? I’m tired of feeling it!

You are a warrior, living with chronic pain and smiling at the same time.

Rating your pain on a scale of 1-10 is tough. Deciding which pain to talk about is also an issue. There are so many different types of pain you can feel at the same time.

Done ith this for today. I’ll be in hiding. Thanks for being here.

March 27, 2020March 29, 2020

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.

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

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.

February 8, 2020February 6, 2020

Why It Is Beneficial To Practice Yoga Whilst Traveling

Yoga can act as a multi-purpose remedy for people of all age groups. It has therapeutic properties within each yogic movement that are good for the mind, body, and soul.

During your moments of wanderlust and planning your travel, when you have decided your favorite destination to go to, you don’t want any moments of severe symptoms or anxiety to impact your holiday once you’re on your way. It’s good to think positively about your future journey, but it’s wise to also take the necessary precautions. If you have impaired mobility, neurological dysfunction, fatigue, pain, etc., you may end up experiencing anxiety, less social interaction or even depression. In an effort to minimize such experiences, you can calm your symptoms or yourself with Yoga.

Meditation, Pranayama, or Yoga are exercises that can be performed anywhere. Therefore, while traveling, yoga can help relieve the symptoms of chronic illnesses. It works as a stress-buster as you increase qualities such as compassion, focus, improved memory, and better concentration. It may seem like too much of a challenge to maintain a yoga routine while traveling. What if you have to face uninvited challenges? However, it’s worth it. Yoga works as a booster to elevate your moods. Researchers have found and proven that Meditators are more self-aware and come through the stress-related problems to live a quality life.

The Benefits Of Practicing Yoga Whilst Travelling

Yoga is extremely beneficial, especially while traveling. Why? Because it promotes better health, allowing you to make the most of your holiday. Yoga, Meditation, Pranayama, and similar yogic practices can also help with clearing brain fog, which many people with chronic illness experience. Meditation also helps in clearing out the clutter that is causing emotional instability. It gives a clear perspective and a focused mindset while the Pranayama also helps in flushing out the toxins to reward you with a refreshed state of mind.

While traveling it is important to maintain healthy habits and to be aware of your surroundings. Create a safe space for yourself! It is important to look after yourself when you are trying to balance work and family life. People often ignore the more subtle elements of their health because they are too focused on dealing with the lives of other people. Yoga makes sure that you take care of your mental and physical health, because only then can you take care of others.

Establish your own yoga routine so you can take it with you anywhere

To start your yoga journey as someone who experiences chronic illness, consider private instructors initially; join gentle and restorative classes; practice Yoga from online sources or digital media. A little bit of stretching and deep breathing can be a benefit to almost anyone. So, travelers must consider this wonderful hack to give priority to their health while still making the most of their adventures. Let Yoga be your travel partner, a guide that can help protect you from all the bad forces of life with the natural power it inherits.

Look at the positive side of the world and appreciate every with grace. Staying positive is a weapon that not many people can fully embrace, but many people chase this state of mind as an infinite goal. So, if practicing yoga interests you, grasp motivation and start your journey. After all, being alive is a gift in itself to cherish!

Bipin Baloni is a passionate Yogi, Yoga Teacher and a Traveller in India. He organizes 200 hours of yoga teacher training in various cities in India and Nepal. He also conducts AyurvedaCourses in Kerala He loves writing and reading books related to yoga, health, nature, Himalayas and Trekking in Nepal .

January 11, 2020January 4, 2020

Why your well meant advice is hurtful to me

Most people have the best intentions at heart when they tell you something. Especially your friends. Assuming you’ve got good friends obviously.

I DO BELIEVE MY FRIENDS ARE GOOD FRIENDS, THAT’S WHY THEIR ADVICE SURPRISED ME SO.

My goal in life is to spread awareness about living with multiple chronic illnesses. How being fatigued is not the same as being tired, how even when we smile we are in pain, how many people don’t understand us. But we try to explain it to them the best we can.

Let me explain why well meant advice can be hurtful by giving examples of advice given to me by my friends.

“Don’t be so negative and just go out there. Sitting at home by yourself is not helping you feel better”

When I say I won’t be able to make it, it’s a form of self care. I’m not being negative. Living with a chronic illness is exhausting and I need a lot of rest. Just sitting up in a chair “not doing anything” is already draining my energy. I’ve tried to explain this in my article “fatigue in chronic illness explained”.

When there are multiple people there, and music playing, it’s even more exhausting. Multiple people, bright lights and music and noises can overstimulate me, making me agitated and on edge. It’s not a fun feeling, and this happens faster when I’m already not having the best day.

This is most likely the reason I’m telling you, I can’t make it today. It’s not as simple as taking some pain meds and keep going. Like another helpful friends suggested. This is not a muscle ache, pain meds don’t take away the pain and don’t do anything for my fatigue and possible overstimulation.

“Just push yourself a little, when you put your mind to it you can do it”

The power of positivity is a good thing and you can accomplish a lot by looking at the bright side of life. I totally agree with this. But I can do that as much as I want, and it won’t take away my flare.

When I go out with someone one day and won’t go out with you the next, or vice versa, doesn’t mean I prefer their company over yours. It means that I need to recover from my outing.

It goes both ways, if I know I’m going out of the house in a day or two I will preserve my energy now. Pushing harder won’t accomplish anything but getting a bigger flare, and having to recover for even longer. Sometimes it can even leave you with long term damage. Nothing is worse than pushing yourself over your limits when you live with a chronic condition.

“Did you try yoga/kale/essential oils/alkaline water?”

Yes! I appreciate you trying to help me, but nobody is more invested in getting better than me! If there was a magic cure for my conditions, believe me I would’ve found it already.

Most of these things are part of my daily routine, eating an extremely clean diet, exercising (meaning basically just moving a little every day), supplements, essential oils, crystals and whatever else I can find that helps.

When you make a suggestion and I haven’t heard about it before, feel free to enlighten me and I’ll look into it. But when I tell you no thanks, for whatever reason, don’t push me. I don’t care that your sisters aunts friend was cured, I probably tried it and it hasn’t helped me. Or maybe I’m just tired of trying things for right now, and I simply don’t want to.

Knowing when to step back, knowing when advice is hurtful is hard, especially when you have no idea what it feels like to live the chronic illness life. But please, have respect and believe me when I tell you things. Don’t pity me and judge me, and don’t try to cure me. That’s all I ask.

December 14, 2019January 15, 2020

How Being Chronically Ill Has Made Me The Target Of Dangerous “Miracle Cure” Products (And How To Avoid Them).

Disclaimer: When starting a new health supplement or diet you need to consult with your doctor first to ensure that any changes will benefit your health instead of making it worse.

As someone who is both chronically ill and overweight, I am a perfect target for the “miracle cure” products that circle the internet. If you’re unsure as to what I’m referring to, certain products on the internet claim to be the “miracle cure” that can cure “any and all” illness or disability. Of course, this isn’t true.

If It Sounds Too Good

I’ve learned over the years that if a treatment sounds too good to be true, then it probably is.

Not only do these products target and take advantage of chronically ill and/or disabled people, but they can also be extremely dangerous. It’s not just because of the possibly unregulated ingredients though. Some of these “treatments” even recommend stopping all other medications while using the product, which is ridiculous!

I’m not going to mention specific product names or brands in this article, as I don’t want to cause any legal issues. However, there are plenty of online resources that can be consulted regarding these types of products. I find that the five most commonly targeted conditions by these scams that I’ve seen are Cancer, Obesity, Fibromyalgia, ADHD, and Autism. However, there is no condition that the scam supplements will not claim to cure. The rise of internet usage in our society has made it super easy for the creators of these scam products to widely sell their product, but I’m hoping we can use the internet to raise awareness about this issue and turn things around.

My Experience

Like many others, I have seen these products advertised all over the internet. Luckily, my mother taught me at a young age to do my research before buying any of these “miracle cures”. Like many of us, my experiences with the advertisement of these products was purely online… until earlier this year. I’ll set the scene: One afternoon I was walking through the main street of my town, minding my own business, heading towards my dentist appointment. Out of nowhere, a woman runs out of a little nutrition store and asks me if I’d be interested in learning more about her products. Me, finding it hard to say no and having time to waste before my appointment, agreed and headed into the store.

It wasn’t until later that I realised how weird it was that she ran out of her store upon seeing me. She wasn’t standing outside her store handing out flyers, and I didn’t see her approach anyone else. Later I realised that she must have seen me as an easy target because I’m overweight and was using my walking cane. As I entered the store, I instantly regretted my decision. Every single one of the products in that store was a “health” product from a single company that is well known on the internet for promising benefits for their products that they don’t deliver. I continued to talk to this woman as if I was interested in buying the products. She went on and on about how her products have improved the lives of people with many medical conditions.

I then asked if I needed to consult my doctor before starting to use these products. She told me that no, I didn’t need to consult a doctor because it was all-natural, and then she made a snarky comment that the fast-food I eat would react far worse with my medication than any product she sells. The funny thing is, despite being overweight, I only eat fast food not even once a week. I couldn’t believe she’d say something like that to someone she had never met before, and I knew her comment about it being all-natural and therefore not possibly interacting with medication was blatantly untrue. I then escaped the store, and the awkward situation, by telling her that I needed to leave to attend my appointment and that I would consult my finances and get back to her. After my appointment, I went home and did my research, and it turns out this company’s products are linked to liver failure. I definitely dodged a bullet.

The Rising Awareness Concerning These Products

Some of these products are so dangerous that the FDA (Food and Drug Administration) has released warnings about them. The FDA is discussing tightening rules regarding these products, however, the companies behind said products are adept at finding loopholes in the law. D] Phil even did an episode regarding a “miracle” cabbage and salt-based drink that the creator claimed cured all illnesses – she evened claimed it could grow back missing limbs and organs and fix chromosome disorders. However, this drink had such a high salt content that prolonged use would cause sodium poisoning, which can be deadly.

Thanks to coverage from platforms like these and articles all over the internet, awareness regarding these dangerous products are arising. Still, however, some people are falling victim to these schemes, and I’m hoping that the continued spread of information through the internet will eventually turn the tables against these scam products.

Some Supplements & Diets Can Be Helpful

Depending on your chronic illness and current treatments, supplements can be helpful for aiding the treatment of your symptoms. Magnesium, for example, is widely known to help lessen muscle pain and spasms. It was first suggested to me by my doctor, and I’ve found it to be very helpful in addition to my other medications. Other popular supplements include turmeric and fish oil, which each have a long list of ways they may be able to aid your health.

Certain diets can also be helpful. I have encountered many people with obesity, chronic pain, and/or fatigue who swear by the keto diet as a way to lose weight and aid the treatment of their symptoms, though I have not yet tried it myself. These treatments (when used under the guidance of a medical professional) can be genuinely helpful. What isn’t genuinely helpful, however, is when people claim that their unreliable diets and supplements can cure any and all forms of illness, which is obviously not true.

“Natural” Doesn’t Always Equal Safe

The main angle these companies use to advertise their “miracle cure products” is that their products are “100% natural, 100% safe!” Don’t let this fool you. A product containing all-natural ingredients does not guarantee its safety. After all, cyanide is natural! And so is the cabbage and salt drink I mentioned above, yet the amount of salt in this ‘treatment’ has caused serious medical events in patients that have drunk it, such as stroke.

It’s not just an excess of certain ingredients that can be an issue. There’s also an issue that comes along with these products targeting the chronically ill. Like many people who are chronically ill, I take a lot of medication in an attempt to manage my symptoms. Many medications have specific ingredients that may not be consumed along beside this medication. Some of these ingredients are in other medications. Others are a part of natural growing foods. For example, I can’t consume products that have grapefruit in them because that would negatively interact with the medication I take every day.

How to avoid dangerous “miracle” supplements:

Do your research.

If anyone other than a trusted medical professional recommends a health product or routine/diet to you, do your research. When researching a product, Google the product and look at reviews that are not on a website connected to the product brand (as some brands delete negative reviews). Make sure the brand or website you’re buying from is reliable. You can even check with the FDA to see if the product is approved, or if the FDA has any concerns regarding the product or the brand. Also, in my opinion, “health” products from MLM (multi-level-marketing) companies and websites should be avoided.

Consult Your doctor or a pharmacist

As always, when starting a new health supplement or diet you need to consult with your doctor before to ensure that this will benefit your health instead of making it worse. This is especially important if you have chronic health issues and take medication.

Pharmacists can give you a break down on ingredients in the supplement you are enquiring about, and inform you as to whether they will interact with any of the treatment you are undergoing. Consulting a pharmacist regarding a supplement I was interested in saved me from possibly developing Serotonin Syndrome, which can be deathly. This would have been caused due to an interaction between the supplement and one of my medications.

Only buy from reliable sellers

Once you have the “OK” from your doctor or pharmacist, only buy health supplements from reliable sources. I personally only buy my supplements from pharmacies and supermarkets. Unless I’m visiting a website directly connected to a supermarket or pharmacy, I will not buy supplements online.

While some people may think that what other people decide to sell or buy is no one else’s business, these “miracle” products take advantage of vulnerable people and they are also often extremely dangerous. I can not stress enough how important it is to consult a medical professional before starting a new treatment. People reading this may think I’m being repetitive and redundant, but I can’t say it enough.

My Resources:

Healthline: https://www.healthline.com/health-news/no-this-miracle-solution-isnt-a-cure-for-cancer-autism-its-bleach#Unproven-and-dangerous-health-cures

Dr Phil, regarding dangerous cabbage-salt drinks: https://www.drphil.com/videos/medical-professional-explains-potential-dangers-of-controversial-health-beverage/

About The Author

November 23, 2019November 21, 2019

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.

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.

October 7, 2019October 2, 2019

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.

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.

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.

“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.