Not All Experiences of Hypothyroidism Are the Same

As many of you already know, 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 thyroid day, asking for support for an upcoming doctors appointment and help with symptoms. 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.’

‘Has anyone else had to go part time or give up work due to their thyroid condition?’  

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

When Some Thyroid Patients Assume We’re All The Same

With these kinds of questions, there is guaranteed to be some people who, for whatever reason, seem to think that 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.” 

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

We Don’t All Experience Hypothyroidism The Same Way!

You’d think that when people are united through having the same health conditions or chronic illness, that they would be sympathetic. You’d think that 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 we not being supportive but instead are being the total opposite?

I just don’t get it.

There are always people who say things such as ‘I have the condition too but I can do things fine’, which is very backwards because you’d think that having the condition would mean they would be able to recognise that different people experience it differently. You’d think they’d have some 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 they 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 therefore everyone else must be, is incredibly ignorant.

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 thyroid conditions and the 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 in with other patients and hearing their concerns and struggles regularly – informs them of the real struggles going on.

I’ve Been on Both Sides

Almost signed off from work due to the heavy fatigue, depression, indescribable muscle pain and more, which left me incredibly ill from hypothyroidism, I was in pieces.

I’m not exaggerating when I say that at one point I couldn’t get up the stairs in my house unaided due to this condition. 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, so don’t think that I used my thyroid condition as an excuse to not try. I wanted to work. I hated feeling practically disabled at just twenty-two years old.

Nowadays, I am doing quite well in terms of my health. 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 is Not a Competition

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

It isn’t a competition to out-do fellow thyroid patients with ‘Well I can do this, so you should be able to as well’.

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 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.

Have you heard comments like this? Feel free to share your experiences in the comments section below. 

See also:

The book Be Your Own Thyroid Advocate: When You’re Sick and Tired of Being Sick and Tired, which builds on this article in detail and covers how Rachel went from very poor health with thyroid disease to thriving again.

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Please remember that if you’re a thyroid patient living with poor mental health or lingering physical symptoms, that you don’t have to live this way. To address why you may still be feeling unwell (often despite being on thyroid medication too), please see this article and go through each suggestion, putting your thyroid jigsaw back together.