Currently off ill with a Hashimoto's flare up so a lot of time to lay around thinking about things.
I wonder how you cope with having an invisible illness, "looking well", and other people around you.
The longer my symptoms go on, the less most people understand even a little bit. More and more I find it hard to deal with comments like "are you better now?", "I never would know by looking at you", "you look so well", "you just need to have a snack and drink with you".
I think only two people have actually tried to understand. I try and approach things focusing on what I can do, for the benefit of my mental health... But feels like I should be answering every "how are you?" with not great until everyone gets it.... But no one will want to hear from that person who isn't fine every day, it will get old for them fast.
Every day is a challenge figuring out what level I am functioning at that day (no days are "normal"), but sometimes it's harder dealing with all the clueless people.
I even bought a Hashimoto's tshirt to make myself feel better, but no one actually understands what it means.
I am working hard on all aspects of my health the best I can and at the speed I can... But dealing with people is actually quite hard.
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Obsdian
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So many of us here know that there isn’t a ‘quick fix’ with Hashimotos. It can take an awful long time for thyroid medication to be optimal and key vitamins in a good place to support thyroid health. This forum is a godsend, as other members understand how difficult the journey to thyroid health can be.
I've always taken the view that people, with a few very notable exceptions, aren't interested in how you are, as you say its just an opening line. If you go ahead and tell them they either change the subject, their eyes glaze over or they use it as a pretext to talk about THEIR health, much more important than yours.
I just say I'm ok, or not bad and leave it at that. The other phenomenon I've noticed is health top trumps, if you say you x y or z happened to you you can guarantee they had it worse or more severe.
So if you say you had a bad headache, their head actually fell off. I've actually seen this among elderly people when in a group. Its actually pretty funny when they try their medical one upmanship.
Yes, the ‘how are you?’ greeting makes me clench my teeth, knowing that the questioner doesn’t really want to know… it surprises me when folks in the Gp surgery/ hospital ask it…so instead of ‘fine thank you’ they get the ‘well if I was fine I wouldn’t be here today, would I?’
I defiantly recognise some of this behaviour. Not everyone is like this hence when they are it’s been easier to pick up. In just don’t the whole pretext to talk about themselves or the health trumps.
🤣 I fear there are many people like that. And, to be fair, the French equivalent 'ça va?' is just a greeting. And the reply is supposed to be 'ça va'. They don't really want to know how you are and would probably be horrified if you told them. I usually compromise by replying 'com ci com ca' (so-so). It's not a lie because it doesn't mean anything, but it's not going into details, either.
GP’s are as bad, had thyroidectomy in January so obviously trying to get levothyroxine dosage right, still under surgical team, felt really unwell past few weeks, levels are improving, had annual bloods for general health (67)ferritin came back as 13 so they did full iron panel, all well in range but ferritin still 13, I’m not anaemic so nothing needs doing about ferritin!! For a well woman below 30 is an iron deficiency, as we know it has to be optimal for hypothyroidism, can’t self medicate as can’t tolerate oral iron, got to actually see a GP Friday, literally can’t do anything, referring me for infusions which will take god knows how long after a lot of repeating myself that it needs to be optimal. Annoyingly on my patient record he’s put not anaemic, ferritin low, patient well otherwise, there’s just no hope is there,
but it's there for your consideration and, perhaps, reassurance. GPs are on a hiding to nothing with people demanding optimal this and that based on the internet spread and amplification of the views of self-publicists whose niche is being contrarian (including, to some extent, the author, above).
Before any thyroid problems I’ve had low ferritin and B12 due to absorption problems that have made me very unwell, on regular B12 injections and always told not to let ferritin drop too low, hence I approached the GP but unfortunately now days they aren’t prepared to actually look at past records just the here and now
Even shop workers, bank cashiers, etc greet me with "You ok?" or "How are you?". I could scream every time it's said to me. Once or twice I've begun to tell them I am not ok. Eyes glazed over. I even once asked to see the branch manager in a bank to complain. I told him I've been asked if I'm ok, what if a close relative had died yesterday? He kind of got my point.
A separate and different story and situation. I have an elderly friend. She was in Waitrose one day and the cashier asked her if she was ok. She said no, he mother who was 96 just died. That cashier said just a minute and returned with flowers and a bottle of wine as a gift. ❤️
Oh, I know exactly what you mean about wanting to scream. I have asthma and I'm always out of breath. So, I go into a back/shop/post office and you can guarantee that the person behing the counter will ask 'oh! have you been running?! I used to say just 'no, breathing problems' (pant wheeze wheeze). Now, it irritates me so much I manage to gasp out 'do I look like the sort of person that runs???' in my best Dame Edith Sitwell voice. That shuts them up. I think that is terribly rude.
For me, reading to my husband some of the horrendous personal stories from this forum has opened his eyes wide. In comparison to many here my Hashi journey, though difficult at times, has been a breeze but when explaining some of the issues with my son recently, he hadn't a clue and was very surprised, even shocked. Maybe we just don't open up enough about the hashi issues we experience+so the world's ignorance continues? For me, I took my daily Levo+ploughed on and kept my concerns to myself as didn't understand the vagaries of Hashi! Mind you, 40 yrs ago there was no Dr Google to help+patients were kept in the dark. It's only with help from this forum that my understanding grew! So grateful.
So true, everything you say. People just don't get it. My world has shrunk, and so have the number of people I see regularly. My husband has only just started to get it, after 10+ years. Its too complex to explain why popping a pill each day isn't enough to make me healthy. And I spend so long analysing my bloods, taking supplements, monitoring blood pressure etc etc, just to try and find something that works! I think I've stopped caring what other people think, and focus on doing whats best for me on any particular day.
My husband has only started to understand, not because of the endless stuff I've said... But because he watched a lady on YouTube talking about a different condition entirely that has fatigue. Anyhow, a bit of progress.
My job has changed (same job, different focus). I used to work with children with severe autism and behavior issues. Really loved that. But no longer have the energy to do that. Now work with children with severe physical and medical needs (low mobility, wheelchairs). I still love it but it's hard after having built a specialized skill set to have to learn a whole new one.
It's so very hard and often it's fending off unwanted comments and dealing with the attitudes that's the hardest part of it all, as you say.
If I'm having a particularly bad day, I'll respond with: "Oh, fair to middling" which is enough to indicate that I'm not in top notch but doesn't go into too much detail.
Or, "Well, my mind is in 4th gear but my body is in 1st" and try and make light of it.
Having had ME since the late 1980s, with varying fluctuations in health status, I've experienced the same issues, but because of the sometimes cruel attitudes towards ME, it's been particularly difficult. Now that Long Covid is recognised, and seems more accepted than ME, at least I have some comparator to tell those interested in finding out more.
With thyroid issues, for those who have a little understanding and are genuinely interested in knowing more, then finding a comparator might give them an idea of what it's like, especially if they've experienced something similar to the comparator e.g. flu.
It's really difficult and you do find out who your real, caring friends are.
But you know what? Those who lack understanding or who refuse to acknowledge the problems we have are likely to experience illness themselves at some point and boy, it's interesting to see how they behave when it happens.
I've also found that those who have been particularly judgemental about ME (and I've had all manner of cruel comments thrown at me over the years) are now humbly coming to me, tail between legs, because they have had or someone they know has/has had Long Covid and some are actually asking for advice.
So, hang on in there, you might find yourself in demand one day (though that might bring fresh challenges.....!).
I don’t know about you, but the fact that a much newer disease (LC) seems to be getting some attention when ME and general post viral fatigue syndrome has been around, in ways that can be even more debilitating than long covid, for decades, makes me mad.
I guess it’s some progress, but why does it feel like a punch in the stomach? Why do I have to use a newer, also poorly known but just less poorly known compared to my actual condition (I also have ME) label/ condition name, to even try to attempt some understanding from people (and the version of ME I have is worst than “standard” long covid anyhow so it’s not even close!)
I’m currently in hospital due to adrenal crisis (I also have Addison disease and many other diseases I won’t list) and I could write a book on the distress it has caused me, coming from all avenues. From doctors, nurses, other staff, I’ve lost 4 “friends” since I’m here (granted they were already red flagged for not being very decent people) and this place is meant to be somewhere one goes to help his/ her health?
The level of trauma is beyond anyone’s wildest imagination
Yesterday I had a hell of a day with a cardiologist. She introduced me to her student “I remember this lady. She is 71 and looks 60.” And yet I apparently need some serious help. So yes I know just what you are talking about, in quite a big way! Her parting shot was “Now you have proof you are indeed unwell you won’t have anyone not believing you now!” This was with reference to my GP who would not give me the prescription the consultant had sent three months ago - which basically I got the blame for! Yes it’s amazing how much our society places on how we look. She can’t possibly be unwell because she looks ok. I am sure if they saw me lying stinking on the couch unable to get up to have a shower or make food etc people might change their minds. But I can’t let that happen.
When asked 'how are you', a reply of 'I'm alive...just' tends to do the trick. People get clear message that even if they don't see what is wrong with you, you have let them know that you are actually not quite that well or could do better. I rather not go 'there' and open my pandora's box of problems that I know most people are not interested to hear anyway, but as that reply leaves then opening to change the subject and talk something more pleasant for both of us...it is relief for them and allow me to be in 'friendly' terms without having to have 'that conversation'. I'll leave any deeper conversations to those who are really interested and when I'm ready for it. It is not rude to say ' thank you for asking but I rather not go there' neither. Saying 'alive' is just shorter and works quicker... 😉
Funnily enough I said to my husband the other day that nobody asks me how I’m feeling anymore, and like other people have said, if you do talk about it their eyes glaze over. They understand when I say things like my borderline osteoporosis has gone (major achievement there), and a work colleague, who suffers with anaemia and has B12 injections, totally understood it when I said my B12 was low, but otherwise I may as well just battle on through and just tell them when I’m on an off day. I do like the comment about being on the right side of the turf though x
I get comments of how young and how well I look, when I don’t feel either. I think it’s because of metabolism being so slow, aging is slowed down, and the orange glow on the skin from unmetabolised carotene can look like a tan. I’ve had people ask if I’ve been on holiday, when actually I’ve been living a half life indoors! It doesn’t help your case when you want doctors to believe you’re ill and give you some real help, or for family to really understand how you’re feeling.
Interesting you mention that. To me, I look my age. I have lots of premature white hair (started mid 20s), and not that long ago was asked how old I was because I have no wrinkles. I think the hair and lack of wrinkles is genetics, same with whitening hair.
Unfortunately the lack of wrinkles (I have been disappointed to find out) is likely due to the build up of fluid underneath the skin. I have recently successfully lost weight and a certain portion of that is for sure, fluid. So along with everything else going wrong, I now have newly minted wrinkles - never had them before.
After 24 years of being on levo and I don't know since when I have hashimoto's, I wish I'd talked more about my disease instead of hiding it. I tried very hard to pretend to be normal and healthy but now I have a heart problem too.
I guess I want to pretend to be normal and achieve what I can but have everyone magically know what not to ask me to do.
Approached my work to discuss adjustments again, as no one thought I'd still be ill after that first dose of levo that lasted way longer than it should.
But, now I am off with a flare up but worrying when I go back to work I'll still get asked to do things I can't do (swimming, walks, cycling) because I haven't had the meeting due to being off.
Gosh, so many familiar stories! After paying for private blood tests because I felt so ill-, I was recommended by the company to go to my doctor (my hashimoto readings being 2937(max 115) and 139 (max 34) and all other readings so low!
I told a friend who promptly told me she knew someone with hypothyroidism!!??
Who had a family and worked!
I felt disappointed and hurt, this illness has been with me for 30 years. It is a constant struggle! I too have worked in total 46 years so I did not understand why that remark was made to me.
We can have the same diseases but they affect us differently. I know of people with Fibro, which I have who use crutches or walking sticks. I also have Ehlers Danlos and there are people who have to splint their limbs to prevent dislocations. Or who use a wheelchair.
Just because I dont doesnt mean my condition is minimal. There are lots of factors that can make all the difference, pain tolerance or degree of pain, sleep, diet, emotional or social support, genetics, medications or just plain luck.
I dont know why people feel the need to say they know someone with the same condition as you who is climibing Mount Kilimanjaro next week. Well bully for them, if I manage to climb my staircase then that's a win.
People are extremely ignorant about long term chronic conditions and how limiting they can be and in my less charitable moments I sometimes find myself wishing they get to experience one first hand.
I think it is very difficult to put oneself into other people's shoes. Experiences that have not personally been made are close to impossible to understand even if an effort is made. I find that other people with a chronic disease are often much more in tune than healthy people. It took me some time to comprehend that and once I did, I was much less affected by the "insensitivities" I "endured". Most people are busy with their own issues and most are well meaning, in my experience, even though it does not come across that way. They want to help and it can feel dismissive. "Oh, just do X,Y,Z. That always helps me." can drive one up the wall and an attempt can be made to educate. Sometimes it works, sometimes it doesn't. More difficult to deal with are personal attacks like "You are are just too lazy (or undisciplined, whiny, self-centered, selfish etc.)" Judgmental comments are, in my opinion, always inappropriate, no matter what prompted them. Judgmental people are often unhappy souls, who treat everybody, including themselves, harshly. The trick is to not to take it personally. One question I ask myself is whether the statement is true. 99% of the time it is not, which means it has no value. Should it be true, then it's something I need to work on.
I do believe that "How are you?" and "How's it going?" have become forms of greeting and nobody really expects an honest answer. My standard answer, if "I'm well. Thank you. How are you?" is not fitting, is "I have my ups and downs." If they are truly interested, they'll ask. If not, they'll move on. For me that's good enough.
I grew up in a community (in Canada) where people said "how are you?" and actually wanted to know. Even many years later that's still an actual question to me.
Ahhh, another fellow Canuck! I would think that in more rural communities where people know each other the "How are you?" really means that they want to know. In the bigger towns and cities that often seems not to be the case (even in "friendly Manitoba" 😜). I had a hard time myself realizing that.
wow Obsdian youve opened a wonderful chat here, thanks and I so agree with everything said by you and others. Even my homeopath said yesterday you look well no one would ever know you dont feel it and I replied yes it’s hard with invisible disease.
I have fibro as well as Hashis (and I’ve recently discovered on my medical records a diagnosis in 2006 of sclerosis on my SI joints which was never told to me can you believe that, all these years I now discover the reason for my sometimes excruciating backache!)
Do least said is probably right unless you have a few friends who may have similar and do really “get” you. We just need to be kind to ourselves and kick ass as per the tee shirt. 🤗💜
It’s very hard all this hypo and hashis malarkey. I was diagnosed with cfs a few years ago and then when the “cfs” was out of control last year and severe i found out i was hashis/hypo as i had suspected all along. Because I was so unwell and spending so much time in bed I actually lost friends! They were people who used to come round to my house and be waited-on with endless cups of tea, listening to their problems and making meals for them (never returned the favour!), then suddenly when i wasn’t able to provide those services they stopped calling or visiting or texting amd i haven’t seen them since!! Unbelievable. It certainly shows who your friends really are. Sometimes I feel like getting in touch with them but I’ve decided they must not have been real friends anyway, although I’ve known one of them since childhood. It was certainly a shock to find out who the users were. You’re doing your best and it’s not your fault. People here understand and it’s good to have this support. I did see a telephone support service advertised by thyroid uk on here for people diagnosed with auto immune diseases, but I can’t for the life of me remember the name of it! #brainfog.
I have to say that I'm a bit stunned reading a lot of these posts. I can't understand why anyone would think that someone else would or should be interested in their medical condition????? Please, I don't wish to offend anyone - we are all on here because we have Hashi's/hypo/thyroid conditions - me included. I've never considered that my friends or even my family who I love dearly, would want to know the in's and out's of my condition. I really feel for posters on here who have lost friends due to this, that's awful. I think if I truly started to tell my family and friends my list of medical issues it would be just like everyone says - eyes would glaze over. Perhaps I just have different expectations. Also, throughout my life, I've found that unless someone has the experience of the condition themselves it is difficult for them to relate - you don't know what you don't know.
That’s fine but this stuff extends very much to medics, making our lives very hard indeed. I just had a fab comment from my cardiologist the other day. “No-one now will not believe you are truly ill. You have the proof”. (blocked artery). Women in particular are often not believed by medics as to their symptoms. There is huge prejudice in health care (as in life) even in this day and age. At least this cardio understood this anomaly in health care but it sounded all wrong coming from her in the way it did. She was on my ‘side’ but it still confirmed prejudice. It’s so prevalent in thyroid issues (dare I say especially in my cardio) because even people who should know better what thyroid issues mean to a body - just don’t!
Regarding people I interact with (not medical professionals), I don't need them to know the ins and outs of my medical issues. For the most part I want to smile and focus on what I can do.
But when I have to share that I struggle with fatigue or muscle pain, for example, I want to be believed and have that considered. I don't expect people who don't know anything to know, but I do expect something from the people who do.
I can't understand why anyone would think that someone else would or should be interested in their medical condition?
I take your point , and up to a point, i agree , other people can't truly understand unless they've experienced something very similar themselves , or have observed it in someone they are very close to , so there's no point expecting them to 'get it' , and no reason to get upset with them when they say something proving they clearly don't. But even though i'd rather not have to explain anything to anyone , i do sometimes have to say 'something' :
ie. to explain that i need to rest now in order to do 'x' later / or will need to do it in a different way / .......or to reassure them there is no need to worry if they sometimes find me monosylabic and looking like death-warmed-up-with-a-limp, but then appear to be fit as a fiddle the next time they see me .... this applies with people i am working with , and also with people i socialise with .... otherwise the impression can be formed that i am just being lazy / difficult / think my woes are worse than anyone else's /or just don't like them enough to make the social effort etc etc .
i'll usually keep it simple and deliberately 'non specific' , something like: "i've got an autoimmune disease that has messed up my stamina , i have to pace myself nowadays. There are some things i can't do anymore, but as long as i prioritise , i can manage it well enough that the essentials can get done, so don't be worried if i look really unwell one day , and fine the next" ..... and i find that having said this once , it usually means the subject of my health doesn't get discussed unless both parties actually want to,... and the rest of the people will happily leave you to get on with it.
before i learned to say something like that, i'd get a constant drip-drip of "Are you feeling better now ?' the next time i saw people. (which is really quite dispiriting when you have something which fluctuates , but isn't going to just go away).
Understand! I find it depends on who is asking. Have different answers. Also on my physical presentation. If I know I look awful., I might just reply hanging in there or tired today, and add how are you to change the subject. Most people who really care also really want to help. So they offers suggestions like more vitamin C. Drink more water. They really don't understand the problem.
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I would think that in more rural communities where people know each other the "How are you?" really means that they want to know. In the bigger towns and cities that often seems not to be the case (even in "friendly Manitoba" 😜). I had a hard time myself realizing that. 
New here. Other thyroid cancer people?
Using estrogen and progesterone cyclically or continuously...interested in other people's experiences!
Another alarming article about a possible cause of thyroid and other endocrine illness
Advise on adrenals and illness please.
