A Friday Night Ode to our Invisible Illness

What do you do when you have a chronic lifelong illness that no one can see? And what if that illness affects an organ in your body that most people have never heard of, and therefore have no knowledge of what it does in your body? What about explaining your symptoms to a loved one knowing that you're not really being heard or understood, and that the person in front of you cannot connect with your level of struggle. Because we all feel tired, moody, down......don't we?

Maybe if they can't see it, it's not really there? Maybe I should just shut up and get on with it. There are people with much worse conditions after all...

Knowing that I will never be truly healthy again and it's going to be a constant battle to feel well. Living with the fact that no one close to me will ever truly understand. How can it make you feel anything other than completely alone?

24 Replies

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  • Hi Hdilie, know how you feel but remember you are not alone and we on this forum do know how you feel and are here for you.

    It's such a struggle every single hour and every day, I just asked myself the same question today, will I ever feel a little bit well again, I would be grateful for even a tiny bit of energy.

    Take care and do know that we are here for you and that we understand. Anna

  • Thank you Anna. Thank god for this forum and lovely people like you.

  • Well my family just think I'm fat and lazy, any excuse to go back to bed.

  • Invisible illnesses are really hard for other people to understand, even those closest to us. I am aspergers...adult diagnosis, and my friends are continually adapting to some of my things...but they are finally at the point where they can laugh along with me. Almost the same with hypo. It took a lot of repetition and for me at least I would explain something as it came up, so they could "see" the symptom. Like if everyone is walking ahead of me while hiking up a hill and I'm slow I will let them know the vertigo hit. That way they saw it, and it connected more. I have no idea if this helps you but I also know the depression can be maddening. I pray for you to have better days.

  • Thank you and I hope you do too! You're inspiring :)

  • I know what you mean. I used to hve a big group of friends and v active social life. No more, now i see a couple of friends every few months. I sort of have to "save myself up" for family stuff even housewrk doesnt get done much. Only this way im ok, when i do more like when i had a temp job in half term (gve up working 6 months post tt) it took me several weeks to get over it. Ridiculous isnt it!

    Anyway we all understand you here x

  • I'm in a similar situation and really struggling this week. I hope you have great days ahead!

  • Good point, we really do have to pace ourselves differently. hugs

  • To explain to those around you the best thing I have come across is the Spoon theory. I no longer have the link but I'm sure a search engine will find it. It basically says we have a number of spoons representing energy and that's our limit for the day though we can borrow one from tomorrow so then we have even less then. It says how many 'spoons' are needed for each task like getting up, etc so we have to pace our day and may not have enough spoons left to tackle the housework or going out with friends but it helps explain that we have to pace ourselves or we haven't the spoons to get ready for bed!

  • yes i have been using the spoons for 2 years, i actually have the spoons in a tray and move them into the used tray as i go thro day, it works for me especially with hubby, he can see if any spoons left when he gets home lol, if a friend asks to come over i txt pic of NO spoons lol

  • Hi I've read that about the spoons I think it's a really good way of explaining what our life is like when you are hypo.

  • Thank you silver fox! I'm going to look it up!

  • Omg.......that is so spot on. Thank you. It seems that the thyroid hell that is this disease does go unoticed alot.

  • Since I got ill I've got more and more pissed off with the term 'invisible disability'. I think it's a load of nonsense, and just an excuse people use. After my TT when I was at my worst, it wasn't at all invisible to me, my eyes were like big swollen bruises, I gained a ton of weight, and could hardly walk from one chair to another or hold myself up. But also I don't think anyone really believes that a person using a wheelchair or with a clear outward sign of being disabled gets treated any better - we all know disabled people are one of the most discriminated against groups in society.

  • I can't put my finger on why I agree with you but I think I do. I'm not sure what you mean by invisible disability being an excuse people use. I swear I'm not being confrontational but interested in an expanded explanation.

    I do agree wholeheartedly with this though:-

    "But also I don't think anyone really believes that a person using a wheelchair or with a clear outward sign of being disabled gets treated any better - we all know disabled people are one of the most discriminated against groups in society."

    OP, spoon theory is the best way to explain a chronic condition were energy has gone but even then some people just won't get it. My sister doesn't and isn't interested in learning. She keeps inviting me on skiing holidays and walking holidays (FFS!): "Just an eight mile walk...". It's painful and I've ended up sobbing at her constant and very normal expectations of what a person can do. I envy her her energy and lack of passed-down family autoimmune conditions. It shines a spotlight on what I can no longer do which makes her unbearable at times.

  • Thanks for your reply VulpusVulpus, it didn't feel confrontational at all, and gives me a chance to figure out more what I mean :p I hope the OP didn't find my post confrontational, either. My intention is to share this idea because actually I hope it's helpful for those of us with an 'invisible illness', because it points out that this term maybe doesn't serve us and we can do better by questioning it.

    I'm thinking of the way terms like 'invisible illness' or 'invisible disability' are used to talk about it being difficult for us to get around the world. I've had an experience before when I was telling someone about difficulties I have using public transport or something, and they said "Oh, is that because you've got an invisible disability?"

    In a usage like that, I think the phrase puts the 'blame' on the invisibility of your illness. If course it strongly implies that if you had a disability that was identical, except more visible, you'd be having an easier time. And it turns attention away from the idea that maybe the other people on the bus were ableist arse holes ;)

    I'm putting that very strongly, but I think we all know that people with a visible disability get similar treatments, and that many so called invisible disabilities actually aren't invisible if someone really cares to look. Or another way of looking at it is that almost all disabilities are to some extend invisible. We can do a thought experiment about what the most impairment you could have without it being clearly visible is, and obviously the answer is that it could be very very serious. Also some people with very visible disabilities are actually very well. So the visibility or invisibility of a disability is not a very real category in terms of working out how much support someone needs. And also I think in the real world, those with visible disabilities are not actually getting much more notice from people around them.

    I think the real problem is that society is not geared up to notice that people are disabled, or are suffering, or need additional support from those around them. Massively, we find the people around us are dismissive, deny what's going on, or respond in another unhelpful way.

    But when someone says "Oh

    that's because this disability is invisible", they're acting like it's the invisibility of it that's the big issue, whereas I think it's the social attitudes that are the problem. That we're free to assume someone is able bodied and can do any activity, until we get really hammered over the head to think otherwise.

    Oops, that turned out long, but I hope it's useful to someone. Also I think this term can make us feel like we have less in common with other disabled people. Which is a shame because I've had a lot of understanding from people with more 'recognised' disabilities.

  • Ah, I get you, thank you.

    "But when someone says "Oh

    that's because this disability is invisible", they're acting like it's the invisibility of it that's the big issue, whereas I think it's the social attitudes that are the problem. That we're free to assume someone is able bodied and can do any activity, until we get really hammered over the head to think otherwise."

    ^^^ This!

  • Your experience with the walking holiday is very similar to something I've had with my family! Very early in my illness I was invited on a walking holiday, and I spent a long time negotiating with them about how I needed to make sure there was a good sofa I could lie down on, as I'd spend a lot of the day on that, and that maybe I'd be able to lie out in the garden of it was very accessible. But everything they were saying was so clueless. I finally realised how ridiculous it was that I was arguing and negotiating to get to a situation where I would spend a week lying in a strange living room alone all day. I was informed that if I was lucky we would play a boardgame together in the evenings. I didn't even get to the point of explaining that if I want to play a boardgame it has to be the focus of the whole day, I'll need a lot of support to get to that point, it needs to happen at my most awake time in the early afternoon, and I'll be straight back to bed afterwards, probably by 5-ish at the latest!

    I don't speak to any of them at this point, four years later, and now sometimes I do play boardgames in the evening.

  • Isn't it soul destroying having to spell out your limitations in such a detailed way? My m-i-l thought my b-i-l was always taking the p!ss with his mental illness/diabetes. He's dead now from a cancer that was more or less disguised by his other illnesses. Well I guess he had the last laugh... :/

  • What a sad story :( But that kind of thing must happen to people all the time. I think the saddest is when the person who has the illness is the one being hard on themselves. I think lots of thyroid sufferers end up like that because the illness is so amorphous. And social convention means it's easier to call yourself lazy than it is to call yourself ill :(

  • Your post has given me real food for thought. I do want to say that I never think of my hypothyroidism of being a disability and would never call it such, it's an illness. I meant it in a sense that it makes it harder to communicate to friends and family when there isn't a lot of stark visual symptoms. The other issue is that we are all very different in how this disease affects us and the symptoms we experience. I am up and down hills all the time, it's my favourite thing to do, my hypo doesn't affect me in that way. But it did rob me of a very good memory and I have what I call 'thyroidy' days where it's like wading through treacle and my mood is bouncing off the wall. It took years of fighting with doctors to get to optimal levels where I worked hard to lose all of the 5 stone my hypo gave me.

    Although we can all come together through mediums like this forum, our experiences are very individual and we each have different struggles.

  • Really interesting point. I agree that it's a very personal decision whether to use a word like disability, and interesting to think about the different places the two different choices can take us.

  • I totally understand the previous comments. I struggle with trying to function " normally". Anything out of routine drains me of energy. A short walk has to be paid for in pain. I quickly succumb to virusus if under stress.

    It's a comfort to know I'm not alone. Though I don't wish this on anyone.

  • How many times have I said the same to myself............people can equate to

    missing limbs but they really don't know what to do with a "hidden" illness, that's why the attude to mental health is so appalling it's a case of I can't see so it's not there. Ur faking, pull urself together etc etc. Then I found this sight and realised I am not alone and never would be with these lovely people, so when I feel down which is very often I come on here and it's like going out to a party so many different views some funny stories, and so much information you will have ur doctors baffled at the amount u have "found out" as was said to me. And how many illnesses are there where they manifest thems selves with lost limbs very few it all goes on under the cover of the body. People are scared of anything they can't see, look how long it's taken the various medical professions to recognise PTSD it's been around since the First World War and no doubt before that I was referred to as shell shock and that started 100 years ago. "And still it goes on I can't see it mornings wrong"

    My thoughts are with you we are all fighting the same things so come and join the party.

    Love Christina x

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