No one understands

LegacyUser

Right , so im not sure where to start , i guess i just need to vent a little.
A few months ago i was diagnosed with an underactive thyroid, and further testing confirmed I have " Hashimotos Disease" , which is an autoimmune disease with no cure ( genetic ) , which causes the body to attack its own thyroid. I will be on medication all of my life for this.
It was a struggle to get this diagnosis, as when my first test results came back , the doctor told me she wouldnt treat me for anything as my thyroid was low but " not so low that we would do anything about it ". I went abroad as I have family there , and thats where i was diagnosed with this condition and was put on approprate medication.

Everybody reacts to this differently , but for me the symptoms have affected me really badly. It got so bad which is why i went abroad for answers. Im finding it such a struggle because the symptoms are still very much there. I have not had one day in the last 5 months where nothing has been wrong with me. One of the main symptoms is what I can only describe as a " Brain Fog" , a feeling in the head similar to having a fever , or my head feeling like its wrapped in cotton- this is accompanied with pressure behind my eyes and in my head . I cannot concentrate properly and im constantly tired , like Im coming down with something.

The reason I write this now is because the last few days have been just awful , i would say the worst ever. Because the way I feel is not reflected on my body physically , I believe people think im just a whiner and am making it all up. Its so difficult to go through each day , come in to work and pretend that everything is all right.

Its such a struggle for me to have this , all i want to do is go home and lie down , but obviously i cant do that . Even if i did, it wouldnt make a difference because i would have it the next day and the next and so on.

I feel like people dont understand and sometimes it gets me so angry that i have to go through this . No one knows what its like.

In work , obvisouly sometimes i might say oh i have this or oh im so tired today , but lately its like theyre thinking" here she goes again" - i get the feeling that they think im making it up. So now i just say " fine " yeah im fine".

Im sorry for this long post , i just needed to get this off my chest. This week has been the worst by far and im getting on with it , but it makes me so angry that I have to be this way. Why cant I have one normal day? Why cant I be like everyone else?

Sometimes if someone says to me , oh yeah but im tired too , i feel like saying well i would like for you to spend one day in my shoes , and then multiply that feeling by every day and see how tired you are then.

Like i said , as this week has been bad , feeling nauseous on top of it and just lousy. I am dubious and relcutant to see my doctor as she will just tell me its in my head as always .

I just feel so alone.

Has anyone had similar experience , and how did you get through it?

Thanks for reading.

LegacyUser

Sympathies OP. My Mother died of an autoimmune disease so I half understand what you're going through. The difficulty in getting a diagnosis for autoimmune diseases is terrible. My Mothers was missed for 40 years or more. Like you she suffered a lot with the 'invisible' symptoms.

At least I'm glad you got on medication.

Autoimmune diseases are on the increase bigtime but no-one knows why. Perhaps you could join an online support group, there is a long term illness thread here on boards.

Don't be afraid to educate others around you about your symptoms. If you are holding down a full time job, I don't know how you do it? Is there any way you could go part time?

Aishae

hi OP, unfortunately people have such a hard time dealing with people who have a constant illness they cant see.
i used to find - in school - that it wasnt understood that i couldnt keep up in PE or climb mountains on field trips. id try. but end up needing people to help keep me upright.
(i have a different genetic problem but brain fog, fatigue etc is all a part of it)

as i got older, people got more used to it and more understanding although i found i did have to educate people a bit on the disease.
it helps in my case that i dont talk about the constant fatigue etc. i reckon its just because if i DID talk about it a lot, people might think i was just moaning. so i do understand that. i dont know if people really would feel that way or if im just WORRIED they would cos im sick of it all myself.

i hope some of that made sense!

fkiely

This may be a bit unorthodox but anyway. OP, is there anybody in work you’re particularly close with? A best friend per se? If you do this could be the key to getting people to understand your tribulations. In your current situation it could be worthwhile asking them for lunch or something and mention that it’s quite important. If you could really go into detail with them about how much it’s affecting you and how you feel others don’t understand, it might enlighten the individual. This could be key in that, in turn, that individual could very well enlighten other members of staff and could thus create a better awareness of your condition among the workforce. Just an option.

up for anything

Sympathies OP. I know where you're coming from although on a different disease. I get through it one day at a time. Some days are good and some are bad and others are nightmarish but there is no other option than to keep going. You should try posting in the Long Term Illness forum under the Science heading as you will find a lot of people battling the same problem there.

LegacyUser

Hi Op,

I got diagnosed with an autoimmune disease was I was 17 - it affected my liver and was told I couldn't drink. I missed a lot of school because of it and failed my first year in college.

I understand about the symphtons etc, in my case tiredness and then more visible ones like not being able to move my joints properly - no cannot walk, hold a pen etc. Thankfully I am usually under control but if I am tired it flares back up.

Just take it easy, you do have to slow down with life and get extra rest and just care of yourself. I am on steriods full time so I don't know I am sick until I am really sick which is a pain. People do understand that you can be sick but you need to keep your head up and live life inspite of the illness. I am usually in pain everyday (not bad but enough) and I just move through it.

You will get through this

ppink

OP I do totally understand you also. I think firstly you should consider changing your doctor. If she is no help to then move on and find another doc who is more sympathetic to your issues. You have enough to be dealing with without having the person you are paying to take care of your health not taking you seriously.
then I would check online and see if you can find a health support group or forum for people suffering similar to you. Now this can be a great help to you. It helped me for a good while to figure things out and make contact but then I found I was dwelling on things too much so I cut down my time on these websites.
It is hard for people to understand invisable illnesses. I do not speak about anything wrong with me now only to a select few people for 2 reasons: 1. it stops me dwelling on my problems and 2. it limits any negative comments from those who have not got a clue.

Being angry about not being normal is normal....if you get me .

Hope you feel better.:)

Roselm

Hi OP, Could your tiredness etc be linked to your medication? I don't know a lot about your condition so maybe this isn't it but a family member with a different condition had side effects of medication for years that were never questioned until he changed consultant.
Best of luck

conundrum

Hi, I was first diagnosed with Hashimoto’s six years ago, so I know exactly where you are coming from. In my case it was caught very early on through a routine test, and I hardly noticed it, but I certainly did a couple of years later - the lack of energy was very hard to come to terms with, and until you get the levels of thyroxine sorted, which can take a long time and lots of trials and errors, you will be prone to tiredness, lack of concentration, weight gain, and a tendency to depression, the classic symptoms of Hashimoto’s. In my case it coincided with perimenopause and menopause, which often mimic and compound the symptoms. I saw loads of different doctors and yes, got told that a great deal of it was in my head and would come out feeling ten times worse than when I went in, out of sheer frustration and despair as much as anything else.

The good news is that you do eventually get to feel MUCH better, as I do now. I don’t have exactly the same energy levels as before but I feel pretty damn good and happy with my life, able to focus on all the positive things I have going for me to such an extent that I hardly ever remember I have Hashimotos. Everybody is different, but in addition to some excellent points made in the posts so far, some of the things that helped me were: making sure that any increases in thyroxine dosage were very gradual, despite the desire to feel better as quickly as possible, otherwise I felt horrendous (anxiety), yoga (ashtanga in my case – something I really didn’t believe in until I tried it out of desperation, NOT talking about it – as mentioned above – although the temptation can be to tell everyone to try to gain some understanding (this gets much easier as you start to feel a bit better) but the result can be that you are making it an even bigger part of your life than it should be, looking at online forums, also mentioned above, although remember this can be a double-edged knife if you happen across very negative posters, and watch out for shills pretending they have had a miracle cure when all they are doing is trying to tout their products to people who feel desperate, and then, of course, be kind to yourself, give yourself treats of some kind when you feel low about it, rather than wallowing in self-pity (which again is a big temptation when you haven’t got much energy), and don’t keep changing doctors at the drop of a hat, but do change if you really feel you are getting absolutely nowhere. I never found the perfect endocrologist, but despite the fact that there are many aspects of this illness that doctors don’t seem to be able to get a handle on, you can often gain nuggets of valid information along the way.

As you said yourself, each person is a world with this kind of illness, and what works for some may have no effect, or a negative effect, on someone else. Good luck with everything, and I think the most important thing to remember is that it does get better in the end, despite all the frustrations and setbacks.

ElleEm

Hiya OP,

I was diagnosed with MS 8 months ago, so I can somewhat relate to you due to the fact that is it also an autoimmune disease. I find the easiest thing to do is try to explain the disease to people when they ask but don't get offended when they don't understand.

Tiredness and stuff is relative, so if someone says they feel tired, it is because they do. They are not comparing their tiredness to yours, so you shouldn't compare yours to theirs.

Being diagnosed with MS, and subsequently telling people about it, has taught me to be less concerned with other people's feelings and opinions on it. People who know about your disease may scare you with their ideas on what this means for your life, so just block that out.

Are there any support groups for autoimmune diseases in your area? Also, take a look at the Longterm Illness forum. It can be helpful to have people in the same boat to chat to.

LegacyUser

Hi OP
I have an autoimmune disease also, and have all the symptoms you described, especially the fatigue. The most difficult thing is trying to get people to understand. So I stopped trying to!! I surround myself with my good friends who completely understand and sympathise. I don't bother going into detail with anyone else and do tell people I am fine, and then vent to friends. My reason is that I wasted so much energy trying to get people to understand how difficult it is (energy I didn't have). Now I don't care what anyone thinks. Funnily enough I found workmates the worst in terms of sympathy!
All that matters is that you look after yourself and always always have good friends to confide in and cry to. Also a support group is a must, I am in one for my particular disease and it is the most reassuring thing as everyone is going through the same things, so please join a group today, there are usually online support groups.

There is light at the end of the tunnel, and I promise it does get better, also counselling can help when coming to terms with any long term illness..it really helped me

Susannahmia

pembeche wrote: »

Right , so im not sure where to start , i guess i just need to vent a little.
A few months ago i was diagnosed with an underactive thyroid, and further testing confirmed I have " Hashimotos Disease" , which is an autoimmune disease with no cure ( genetic ) , which causes the body to attack its own thyroid. I will be on medication all of my life for this.
It was a struggle to get this diagnosis, as when my first test results came back , the doctor told me she wouldnt treat me for anything as my thyroid was low but " not so low that we would do anything about it ". I went abroad as I have family there , and thats where i was diagnosed with this condition and was put on approprate medication.

Everybody reacts to this differently , but for me the symptoms have affected me really badly. It got so bad which is why i went abroad for answers. Im finding it such a struggle because the symptoms are still very much there. I have not had one day in the last 5 months where nothing has been wrong with me. One of the main symptoms is what I can only describe as a " Brain Fog" , a feeling in the head similar to having a fever , or my head feeling like its wrapped in cotton- this is accompanied with pressure behind my eyes and in my head . I cannot concentrate properly and im constantly tired , like Im coming down with something.

The reason I write this now is because the last few days have been just awful , i would say the worst ever. Because the way I feel is not reflected on my body physically , I believe people think im just a whiner and am making it all up. Its so difficult to go through each day , come in to work and pretend that everything is all right.

Its such a struggle for me to have this , all i want to do is go home and lie down , but obviously i cant do that . Even if i did, it wouldnt make a difference because i would have it the next day and the next and so on.

I feel like people dont understand and sometimes it gets me so angry that i have to go through this . No one knows what its like.

In work , obvisouly sometimes i might say oh i have this or oh im so tired today , but lately its like theyre thinking" here she goes again" - i get the feeling that they think im making it up. So now i just say " fine " yeah im fine".

Im sorry for this long post , i just needed to get this off my chest. This week has been the worst by far and im getting on with it , but it makes me so angry that I have to be this way. Why cant I have one normal day? Why cant I be like everyone else?

Sometimes if someone says to me , oh yeah but im tired too , i feel like saying well i would like for you to spend one day in my shoes , and then multiply that feeling by every day and see how tired you are then.

Like i said , as this week has been bad , feeling nauseous on top of it and just lousy. I am dubious and relcutant to see my doctor as she will just tell me its in my head as always .

I just feel so alone.

Has anyone had similar experience , and how did you get through it?

Thanks for reading.

Myself and my mother have under-active thyroids and depression. I know exactly how you feel it sucks when you have an illness that is invisible and this condition can make you very depressed.

Actualy before myself or my mother were diagnosed my mother used to complain about exactly what you are talking about. It got so repitative I was starting to think she was just whining.:o I feel so bad about it now.

I have no advice really I agree it sucks. Just want you to know you are not alone.

Esoteric_

My aunt actually has Hashimoto disease, and my family are all at risk of it (my own blood tests came back inconclusive three times for Hashimoto >_> ) so I can somewhat understand how you feel.

It's awful having an illness that's not physically visible because after a while, some idiots assume you're making it up and are just milking it. My mum has an auto-immune disease and constantly feels how you described (she also has thyroid problems). It's a really horrible situation to be in. I personally have an injury that will take several months to heal, but is not physically obvious (it's tissue damage) and just tonight a few of my colleagues laughed at me because I said I wasn't able to carry a black sack of rubbish down several flights of stairs because the girl who was supposed to do it was too lazy to bother. It's really horrible when people think you're milking an illness when you're really not.

I'd suggest that you talk to the management or even your colleagues about how you're feeling, and even explain Hashimoto Disease to them because not a lot of people have heard of it (I hadn't until I was told I needed to get tested, I thought it was a made up name tbh). Maybe if your colleagues and whoever else is making you feel bad are educated a little on the disease and its effects, they may have more empathy.

I can't really suggest much else but you're not alone, remember that. And no matter how bad someone makes you feel about your illness, you know it's real and you know how it makes you feel. Don't let anyone make you feel bad because of something you cannot control.

Emme

If your Hashimotos is affecting your work talk to management or occupational health. It takes time to stabilise thyroxine levels and get back to "normal" after diagnosis. I was diagnosed with Hashimotos a few years ago and suffered the exhaustion, brain fog etc.

Try cutting white flour and white sugar out of your diet - all the things that can make you hypoglycaemic. I found that helped. If you're not happy with your progress try another doctor. If this helps, I recovered enough after 18 months to run several 10Ks in a decent time (<60 minutes) but I have to be vigilant. If I find myself getting lazy or depressed I get my thyroxine levels checked because that can be a sign they're low.

Good luck.

theg81der

Your not alone Op I have also experienced something similar and still am although not to the same extent now. Congrats on getting a diagnosis, it is not an easy task and at least you can feel somewhat vindicated. What did your regular doctor say, did he/she apologise, say anything? I am so frustrated dealing with doctors for the last 13 years and I am just sick of being sick. Somedays I feel I can`t take it and others I feel like I will overcome but thats the point - your going to have ups and downs and your entitled to.

I think putting a name on it having a diagnosis is very important to other people because they can kind of put you in the "sick role" its like "ok you belong in that box over there so". When they don`t know your diagnosis they think your mental or a moaner because they have to think that because otherwise they might have to do something :eek:. and in case you don`t know people can in general be pretty selfish. You can`t expect to much empaty from people because the majority have`nt had these experiences.

Good luck Op and if you need someone to say it - its not fair, you shouldn`t have to suffer this and other people should be more understanding, particularly the useless excuse for people posing as healers in this country.

Daisy M

I have an auto immune disease too, it appears to be so common yet you never realise this until you end up having one. I had the same reactions you had and in hindsight I realise that it wasnt that people didnt care just they didnt realise just how bad things can be especially if on the outside you look ok. However over the years people have became more aware of what I go through I think its because when they hear/read an article about my particular illness they take a little more notice because they know someone who suffers from it, like wise if they meet someone and find out they have the same condition they take more heed. Its hard for you to believe now but you will become accustomed to having this illness and find ways of managing it and learning your limitations, I am not saying it will become easy to live with but it will get easier. Try and not let the illness define you, its a small part of you dont let it take over yourlife long term, I found the first two years of my illness the worst. If your gp is not sympathetic get a new one you should not have to put up with doubt from your gp.