To the Online Chronic Illness Community: Our Health Is Not a Competition

As of late, a lot of change has appeared in my life. Not in dramatic forms of being cured of feeling well in myself. As my luck would have it, I have unfortunately spent the entire time period of May and June completely in bed. Despite this setback, I am seeing positive changes despite the situation which is incredibly uplifting for my spirits. Change has appeared in my personal life due to the fact that I am requiring a lot more help with day-to-day tasks, yet this has been the best form of change for my quality of life and is something to rejoice over. I’m feeling stronger despite being physically at my weakest point.

One major change has been to choose happiness and positivity as an everyday commitment. Although difficult and a tough balancing act, this has been incredibly beneficial to my personal growth and I hope that this is a sign of better days on the horizon. I’ve seen changes in a short period of time all thanks to changing how I view my circumstances, my position and my lifestyle and this has certainly put an incredible amount into perspective already.

During this time of change, I felt the need to limit my time spent on my chronic illness social media platforms. I reduce social media intake whenever I need to focus solely on myself and my health journey. I knew this would be good for the soul in order to truly work on and keep up any form of positive change I have made. Through social media, I have actually met some incredible people and have made what I hope can be lifelong friendships. However, social media as of late seems to be turning chronic illness into a form of unnecessary competition — something that makes me feel slightly panicky inside because we really do not need the extra problems on our seemingly full plates. Where has this surge of competition appeared from? I reflected on how negative the chronic illness community is becoming when I eventually began scrolling aimlessly down my feed again.

I admit, we are incredibly lucky to live in an era where we are chronically ill, yet we have the ability to connect so simply through forms of social media. It has spared many of us from feeling despairingly lonely and distressed in our individual circumstances. However, we cannot forget that social media only shows the tip of the iceberg in an individual’s life. Social media shows us a completely different point of view that allows us to overthink and overanalyze our own lives. It either promotes complete honesty or dictates a fantasy — an edited highlight and “best of” reel. It can be a contorted form of what we wish to impose upon the public domain, whether that be from a positive or negative viewpoint. Lately in the chronic illness community, it seems as if there has been an infatuation of hospital ward photographs, negative posts and limited forms of clarity shared on social media. I have been leaning towards the positive pages because that has supplied me with more hope than my regular feed. It is not the place I once sought desperate solace in connecting with others, just three short years ago. There are rude remarks, arguments, belittling and meddling.

I believe many people are trying to prove how sick they are via social media. I completely get why it happens — we all have our down days and when they stick with us for longer than we would like, we feel completely broken in every way, shape and form. Our sadness can spill over from our private lives onto our social media platforms without us realizing it. Illness has tendencies to spill into every form of our life and we may feel pretty helpless in its grip. Yet while doing so, some have taken on the approach of attacking those who appear to be having a better spell of good health.

Firstly, you do not have to be in the hospital as an inpatient to be truly sick. You do not have to have an ambulance called to be truly sick. You do not have to spend the majority of your week in bed to be truly sick. You do not have to be a wheelchair user to be truly sick. You do not have to put your life on hold completely to be truly sick. You can still achieve while being sick. You can go to school yet still be sick. You can hold down a job, yet live with an illness. You don’t have to be stuck at home in order to be sick, and lastly, you certainly do not have to look sick to feel it. There are so many different walks of life that include chronic illness. After all, our personal sickness and health issues are relative and damaging to us as individuals. You could take all the time in the world to attempt to explain every little detail of your health journey to someone and despite this, you may still be met with disbelief and questioning. Unless you have walked a certain path, you will not understand the trails and tribulations it entails or how it changes people’s lives. 

I believe we are losing the true purpose of awareness when we try to out-do each other. Sickness comes in different forms and that is so important to remember, just as important as remembering the principle of invisible illness. It is damaging for the chronic illness community to compete with each other over who is “sicker” or extra “hard done by” in life. We need to remain united for the same reason. That reason is that we all hope to eventually reach wellness. We need to inspire each other without belittling. We need to motivate each other to push past our individual boundaries, without remaining focused on our own failures within illness. We need to look at each other’s triumphs and think, Well I might not be able to do that but I am certainly going to try something today that I could not try yesterday. It might be as simple as brushing your own hair or putting on a form of clothing. Provide yourself with a confidence boost rather than focusing on what you do not have in comparison to others. I have been there myself and small changes have made all the difference.

We are all so different, and comparison is the thief of our joy. We are united in sharing a diagnosis, but no two patients will ever walk the same path or feel identical forms of pain. Your journey is your own, plain and simple. You do not need to provide an explanation to justify your current situation in life, despite the fact that as human beings, we tend to do just that. There is no right or wrong in chronic illness — we are all granted a life and we all have different limits and capabilities, strengths and weaknesses. We all go about living with chronic illness in different ways; it is a case of trial and error. There is no textbook approach to living with chronic illness, nor is there a checklist for what qualifies someone to be deemed “chronically ill.” You ultimately deal with your chronic disease or disability through every passing moment. You do not have to prove your health adversity or how you choose to cope to anyone.

We are all working towards to same goal here and we only fail each other through competition. All of our lives have been upturned because of chronic illness and we all feel that physical and mental burden of a diagnosis. We all remain challenged in our everyday lives regardless of our different paths of diagnosis. Our goal as a chronic illness society is to reach our unique and individual versions of health and happiness. We want to raise awareness, but we need to do so in the best way. Ultimately, we want nothing more than to feel better or well within ourselves, and we need to want it for each other, too. Eventually, we should hope for all of our circumstances to mirror this outcome. Progress is positive and uplifting for everyone — it proves it can be possible despite living with complex illnesses. It should not make us doubt ourselves and our bodies even more just because we are slightly bitter over our current circumstances or limitations.

We should be showing each other that changes, big or small, are possible if we take the time to bring them to the surface. The constant symptoms of our illnesses can cloud our judgment about the positives in our life. We need to become compassionate to each other and show support, rather than questioning, interrogating or rivalry. We need to prove to ourselves that there is so much more to us as individuals than feeling defined and immersed by our physical pain. We are not our illness. Defining ourselves by our pain levels will never decrease it.

If you have anything to celebrate within your circumstances today, whether you achieved something on a small or large scale, please don’t waste time overlooking this positive achievement. It might have to ability to completely change the way you are looking at the circumstances within your life. You might not get the chance to celebrate your achievements tomorrow, so never downplay your abilities just because you think you have to fit the mold of chronic illness. Our health, nor the possibility of good days appearing to us in large quantities, are not guaranteed to any of us.

We should only compete with ourselves through this hardship, and instead use our energy to support each other through the good and bad times. Comparison will forever steal our joy if we remain focused on fitting the chronic illness mold, reluctant to share the good times because we fear they should be a constant level of bad. You do not have to downplay your incredible achievements with negativity just because you think you are offending the chronic illness community. Shout your achievements from the rooftops because those who are living with pain understand how difficult any task in life can be. If you can provide one thing today, allow that to be hope to someone with chronic illness — hope that they can in fact achieve these moments in life soon enough, too.

This blog was originally published on The Chronic Illness Diary of a Young Adult.