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Just Because Someone Shares Your Illness Doesn't Mean They Experience It the Same Way

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I set up a Facebook group to provide support and advice to those living with hypothyroidism. Posts that members submit range from people asking for help in understanding what blood results mean, needing to rant about a difficult day, asking for support for an upcoming doctor’s appointment and even fun discussions to meet online friends. After all, living with a chronic health condition such as thyroid disease can be lonely.

However, every now and then, a couple of particular topics are discussed for which the responses always shock me a little. Topics such as: Has anyone successfully received disability benefit for their Hypothyroidism?,” “I needed a seat on public transport but had to stand and felt very unwell” or even Has anyone else had to go part-time or give up work due to their thyroid condition?”

They all seem innocent topics enough and reasonable questions to ask, but they also always bring out certain people with bad attitudes.

With these kinds of questions, there is guaranteed to be some people who, for whatever reason, seem to think it’s a good idea to suggest that we all have the same experience with the same disease. Every time without fail, I see these comments:

I’ve never needed to claim benefits. I’m not disabled. Hypothyroidism isn’t a disability. Pull yourself together!” 

“I’ve never had a problem with having to stand for public transport. Hypothyroidism doesn’t make you unable to use your legs!”

“I’ve worked hard my whole life. Nothing will ever stop my work ethic. People are using their health conditions as an excuse to be lazy.” 

Oh my, the ignorance.

These are genuine answers I’ve read. And they shock me.

You’d think that when people are united through having the same health conditions or chronic illness, they would be sympathetic. You’d think they would be aware of how little awareness the general public already give it. As part of a community brought together by the same health condition, why are you not being supportive but instead are being the total opposite? I just don’t get it.

There are always people who are like, “I have the condition too but I can do things fine,” which is so backwards because you’d think that having the condition would mean they would be able to recognize that different people experience it differently. You’d think they’d have the compassion and sensitivity.

For some people, their hypothyroidism is a disability. It can leave people bed-bound, in excruciating muscle pain, unexplainably fatigued, depressed and more. If you’re a thyroid patient who is lucky enough to find that you actually feel rather well, count yourself very lucky that you don’t experience what so many others do when the disease has devastated their life. To imply that because you’re pretty healthy with hypothyroidism, everyone else must be, is incredibly ignorant.

And I’ve been on both sides.

Almost signed off work from the heavy fatigue, depression, indescribable muscle pain and more, that left me incredibly ill from hypothyroidism, I was in pieces. And I could not stop it. I’m not exaggerating when I say that at one point I couldn’t get up the stairs in my house unaided. I was bed-bound for days at a time, unable to move apart from using the toilet in the next room. I’m a determined, motivated and generally positive person, too. Don’t think I like wallowing.

I am currently also doing quite well. I work, I function without my thyroid condition getting in the way for the most part and my mental health is the best it’s been in a long time. But I know how bad it can be. Some people are left suicidal with thyroid disease. I wanted to die at the worst point of battling this condition.

It just seems so backwards that people with the same condition then apply the same standards to everyone else with it, as if society already doesn’t misunderstand our chronic illness and its effects. These people are being just as bad, if not worse, because their ignorance and dismissal is existent despite them being aware of the disease. And being a part of the community, being in touch with other patients and hearing their concerns and struggles regularly, informs them of the real struggles going on.

I think they must forget that it isn’t a competition.

It isn’t a competition to out-do your fellow chronic illness warriors with “Well I can do this, so you should too.” You don’t get points for invalidating someone else’s struggles. It makes those who are struggling feel even more alone, even more misunderstood (when they’re no doubt already coming up against a lot of people not understanding their situation in real life anyway) and it takes us many steps backwards.

I’ll never understand why some people who are part of a community that provides help and support to those struggling with the same condition will then dismiss all the effects this same condition can have on someone else and their life. You can’t compare these experiences. Everyone is individual and so is their individual experience. Everyone’s experience is valid.

Follow Rachel’s Journey on The Invisible Hypothyroidism

Getty Image by alien185

Originally published: April 16, 2018
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