Why Chronic Illness Is Not A Competition.

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As you know this blog is usually a pretty positive place; I love to share pictures of recipes I’m making, veggies I’m juicing and all the other bits and pieces that make up living a balanced lifestyle! Usually, I get lots of lovely comments but occasionally I’ll see sarcastic ones, which all seem to follow the same vain: If you can eat this/do that/feel like this then your illness must not be as serious as mine.

 

I shouldn’t be surprised: competition between those who are unwell is not a new thing. I see this all over the web. From my little space on the net, to social media, to the facebook groups I’m a part of.  As I mentioned in my article on Sam Faiers and other celebs last week, when we hear about someone else’s experiences we’re quick to compare it to ourselves; in an attempt to make it our own experience too. While Sam experienced a backlash for her naivety when sharing her ‘cure’ of IBD, many others receive nasty comments for sharing a success story of their own illnesses. Of course, these success stories might not always be scientific in nature (I’m cured after taking Aloe Vera!) and can be frustrating when it seems the writer hasn’t grasped the severity of the illness. Yet essentially they all feature people celebrating the utter relief of feeling well. 

In response to these kinds of stories, I’ve seen replies such as ‘it won’t last’ ‘just wait another ten years’ and ‘you obviously didn’t have the illness to begin with!’ It is clear these responses don’t often intend to be malicious but stem from perhaps lived experience. How many of us have had that feeling of excitement when being told their well for it all come crashing down a few weeks later (I blogged about the very same thing in my open letter to Crohn’s in December)? Therefore, we can’t help but feel we know better.; we’ve been there, done that! Yet is projecting our own experiences on to others really the answer.

What about the competition for who has the ‘most severe illness?’ How many times have you seen people compete online over who is feeling worse that day? When people lament over feeling poorly, users are quick to comment. That sounds like a good day for me… If it’s a food post, people reply ‘your illness must be much milder than mine if you can eat that! ‘ How can we possibly get an accurate picture of someone’s health from an internet snap? But more importantly, we don’t need to. Instead internet sites should focus on support and encouragement not comparison and competition.

Another area of competition revolves a highly controversial topic in the spoonie community: being able to work. This is where experiences vary so widely: many are lucky to work full time while others are forced to claim disability living allowance due their debilitating illness. Yet this is not simply due to a disease being mild or severe. Many things can effect this such as mental health, confidence and being able to manage symptoms while working. While I feel really lucky to be able to work full time and blog, I would never assume those that do are simply only experiencing ‘mild’ symptoms. Similarly, those with ‘mild’ symptoms (and I use this term loosely to demonstrate the arbitrary nature of defining illness on such a sliding scale) shouldn’t be assumed they can rush back to work- the psychological impact of many chronic illnesses alone can be life-altering.

This links to the final hotly debated topic: disability. I often see many petitions circulating the net to recognize illnesses (including IBD) as a disability. This is something I don’t agree with as I think lots of it comes down to personal perception and whether you feel the disease you have impacts your day to day life significantly. For me, I don’t see myself as disabled but this doesn’t mean others don’t. But again this doesn’t make my experiences ‘better’ or ‘worse’ than anyone else; it’s just my perception.

As I mentioned in my last blog rant; our own journeys are the ones that are the most important. It doesn’t do us any good in being with competition with each other when the real battle we should be focusing on is only thing that really matters: the fight for good health.

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6 Comments

  1. March 5, 2016 / 11:28 am

    This post is spot on! I live with fibromyalgia, IBS and depression and I have a certain friend that whenever I say ANYTHING she seems to have to one up me. I was thinking about posting a post about why I have stopped taking medication and am learning to rely on natural remedies (diet, exercise, heat packs etc) instead but I am too worried about the backlash.

    I agree with you on the being able to work aspect too. I have recently left my full time permanant job to work on the staff bank where I chose which hours, which wards etc that I want to work. I have had backlash from my old ward about how I didnt do nightshifts on there because of my illness but they dont seem to understand that as a temporary staff member I can chose to take a nightshift on a good day and yet also choose to spend the next week in bed recovering if thats what my body needs.

    Hit the nail on the head anyway, and we should all be supporting each others triumphs and also if someone is having a bad day, let them have it and dont try and say people have it much worse!

    • Healthyglobetrotting
      March 5, 2016 / 6:25 pm

      Ah what lovely feedback! I always find the most popular posts are when I post about what I’m passionate about so go for it- they’ll always be people that don’t agree.I am actually thinking of doing similar thing and go to supply teaching; i just want to have a bit more flexibility to take care of myself!

  2. March 5, 2016 / 11:44 pm

    Great post! I’m really guilty of this sometimes. When I come upon a spoonie blog of someone able to work I sometimes dismiss them since they obviously can’t be that sick it they have the energy to work. The rational part of me realizes that’s not true at all, but sometimes the jealous part of me wins over even though I know it shouldn’t be a competition!

  3. March 6, 2016 / 8:51 am

    If I’m honest this is a topic that totally grinds my gears. I hate to see people bring others down in the name of competition. To bring someone down because you are unhappy in your own situation is low. I had it the other day on Twitter because I dared to post something one person clearly deemed too positive. I actually shared the original tweet because it was something I needed to hear (as I was a few hours away from a phone call where I knew I was losing my job). Apparently having a chronic illness means life is terrible & there are no opportunities! I hate the whole “I’m worse off than you” attitude and have no time for it really.

    I think the thing people have to remember is you don’t know the person you are talking to online. Regardless of whether they blog or not, you only know a small amount about them. People don’t know how bad I was because I didn’t want intricate details of my life on the Internet. I share what I am doing to feel better but people probably don’t understand the level of effort and the trials and tribulations involved in it. I find a lot of people say they have tried everything when it’s simply not true. I can say that because I had felt that way and yet I hadn’t done all the things I do now and these are what are helping me.

    Work is a tricky one. I absolutely admire everyone who works with chronic illness! I have been on both sides of the coin. I worked in a physically demanding job where I walked up to 8/9 miles per day and also commuted for 2 hours a day. How I did that for as long as I did I have no clue!! I know it’s part of the reason I am how I am now, sadly. Isn’t hindsight wonderful? Was I better off working than I am now I cannot work? I don’t think so. I was more functional then but my symptoms were so much worse because I was pushing so hard. I was in a ton of pain. Now, my symptoms are less severe in a lot of ways but my level of functioning is much much lower. So I could never judge how someone is feeling based on how much they can do.

    Judgement is never helpful and people would do a lot better to support one another and share in our successes. I always think that just because we are told it, it doesn’t mean recovery isn’t possible. Particularly for an illness like mine that is so poorly understood. I like to think outside the box like that though 🙂

  4. March 7, 2016 / 12:41 pm

    Thanks for this great post. Some days we need to share our pain and have kind words come our way. Other days we need to share with the world how great we feel. Having found a good combo of meds for my body, I don’t have flares as often, but feel I need to let those that fear they will never have a good day know they will. However, I also feel like I lose people on my blog when I say I’m feeling well and it’s a scary place because with RA, I may need that extra support again. Plus, it is just nice to have so one say they are happy for you.
    Cathy recently posted…Dear ImmigrantMy Profile

  5. Shawn Blessing
    March 7, 2016 / 5:07 pm

    Very well written.

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