Family that doesn't understand

[DMC03]

I am new to the forum. Does anybody have families that don't or can't understand, so get frustrated with them?

[Lulu_65]

Yes! I have many members of my family who think like doctors..... ie, I'm taking thyroid hormone so I must be fine 😐

Lu x

[DMC03 in reply to Lulu_65]

Thank you Lu, I get that too x

[shaws Administrator in reply to DMC03]

If people have never had an autoimmune disease, they cannot possibly step into our shoes, unfortunately. I assume they think it is similar to having a headache - you take a pill and headache disappears.

The problem with hypothyroidsm is that our body doesn't function without an optimum dose of thyroid hormones and very often the doctors we expect to know how to treat us just haven't a clue and keep us within a range, even a TSH at the top of the range and never test Free T3 to see if we are converting levothyroxine into the essential life-giving hormone, T3.

There's nothing like a personal experience for awareness and hypo is a whole body experience, not just one part unfortunately.

[Pinklady23]

Oh yes 100% which is so frustrating as it's family you need to talk and get support from! I have friends who understand but they don't fully get it no matter how hard they try. Hence why I've come on here!

[DMC03 in reply to Pinklady23]

Thank you, mine just don't seem to get that if I'm tired I have trouble keeping on top of things and forgetting them

[Pinklady23 in reply to DMC03]

Same here along with...oh you'll be fine once your tablets start to work and it'll be over....or best one "oh I don't want to hear more it's depressing" not helpful but we're all at least on sake wave length on here!

[porter5]

Likely everyone but not everyone admits it.

Frustration arises when we don't get what we want.

What do you want from your family?

why should they behave differently just because

you want them to?

Why not ask them how they understand the issue

you have a problem with?

[humanbean in reply to porter5]

porter5

I don't think it is unreasonable for sick people to expect their family and friends to believe they are sick.

[MrsRaven in reply to humanbean]

I agree humanbean. My husband is rarely ill. If he gets a sore finger he's a drama queen. He suffers with an oesophageal ulcer, caused by acid reflux, which is slowly healing. I know what its like, because I had one to add to my problems, years ago.

He got taken into the AMU the night before last, with a food blockage, hadn't been able to eat or drink for several days. He felt lousy and he wanted to be fussed over, so I obliged. Whilst I felt concern for him, my reaction (privately) was welcome to my world. Its taken me 25 years of suffering hell to get him to actually admit I am ill, and make some allowances.

[dang in reply to humanbean]

Hey humanbean I agree with you. They should definitely believe you, but that is not the same as understanding, you can't expect them to understand unless they have been in the same situation.

If they don't believe you then they are incredibly unsupportive and I feel sorry for anyone who has to deal with such family members.

[porter5 in reply to humanbean]

views of sickness will depend on what type of sickness and whether sickness

is a rare or a regular thing.

then some people make a lot of their sickness while others don't. It is

unwise to generalise without knowing the circumstances and relationships.

[Had-enough]

Sadly, family and work colleagues haven't got a clue how debilitating this is and how ill I've felt. Without this forum I don't know where I'd be. Well I do and it's not a nice place. It's comforting to know I'm not alone, even though I wouldn't wish this on anyone.

[Lisa-1967]

I have an under active thyroid, take a tablet everyday and you are told this should be the answer. I'm still waking up tired, joints aching, jumpy, constant struggle to carry on with work. Families don't understand what it's like, doctors don't seem to test for everything so there may be other things wrong. It's a complex condition.

[MrsRaven in reply to Lisa-1967]

I think the fact that they wont test is an added burden. Family thinks that because they wont test its all in the mind, and nothing to do with cost cutting. I have blagged another vitamin and minerals test, only second one in 18 months, and have just paid for a full thyroid test, I need a saliva test for adrenals but the budget wont run to it. So more guesswork.

[Ianswife]

I have graves and when I was really poorly with it my 17 year old daughter said I was a nightmare to be around ! . I think it's like most things in life and unless you experience having a thyroid problem then you are not going to understand how badly it affects people .

[Snoddyoddbod in reply to Ianswife]

When I had my second flare up I went to sleep for two weeks. My 16 yr old look after me. She pushed food into me and kept an eye on me. She put me in the bath and kept everything going. No one else understood at all. It was confirmed as Graves. I got back to work where most people were ok but one made my life a misery cut me off completely. I got the blame for it too making it worse.

Most of my family don't understand. They seem to think there's a miracle cure.

I just say I'm fine or I'm ok to most people now it's easier than saying I've had enough!

[Anthea55 in reply to Snoddyoddbod]

Well done to your 16 year old!

[MrsRaven in reply to Anthea55]

My husband was working away a lot when I first became ill - diagnosed with FMS. I'd been ill for many years. My youngest was 13 and he kept me going. He still does now. Hes very understanding. I think its helped him to become a better person too.

[Foxie1234]

Hi DMC03

I fully sympathise with you. My husband was supportive last year when I experienced a thyroid storm (I think it frightened him a bit!). Since having a TT in June 16 I have been taking Levo, levels up & down still, so am experiencing lots of hypo symptoms....my husband can't seem to understand why I have no energy, joints ache, feel awful most of the time...he, and most of my family seem to think that because I have had my thyroid removed and I am taking 'the magic pill'. that I should be ok. If I go out for the day, or even just shopping, it takes me a day to recover. All my husband keeps saying is I need to exercise more...sometimes my muscles hurt so bad I can't even climb the stairs, let alone go for a long walk or bike ride.

If our family and friends experience half the symptoms we do they would be more understanding of our condition.

My answer is look after yourself and let them get on with it, show them the sympathy they show you if the get ill...then they might understand how we feel, most of the time!

Good luck and keep well (or at least as well as this horrible disease will allow).

[France1 in reply to Foxie1234]

'Maybe you need more exercise - push yourself!' Or 'maybe it's your diet' or ' you have no idea how difficult it is for me living with you whilst you are like this'

Sound familiar!!?

[Snoddyoddbod in reply to Foxie1234]

The magic pill. That's says it all really. I think and feel that's what everyone around me seems to think. just take the tablets and all will be fine.

It's nice to hear someone runs out of energy like I do. I crawl into bed at night and my joints are so painful sometimes I don't honestly know what to do with myself. I work full time doing manual work then go home to cook and do whatever needs doing by ten o'clock I'm exhausted. Sleep is in hour long bouts I have to wake up to turn over as everything hurts Then I lay there like a zombie waiting to go back to sleep!

It's truly is a horrible disease.

[TaraJR]

I've mostly had very supportive family and friends. And I feel for people who aren't supported.

Why not give them the Spoon Theory to read...?

butyoudontlooksick.com/arti...

[Glynisrose]

I live alone so I can happily ignore my relatives except for my sister who is worse than me in the hypothyroid stakes.

[SilverAvocado in reply to Glynisrose]

I am the same, live alone, and dealt with all my TT and RAI alone, even when I couldn't wash and feed myself. Sometimes I feel sorry for myself. But when I hear stories of people living with unsupportive family members I feel very lucky.

There is a luxury to being able to keep my own times, never have anyone judge me for being in bed all day, and to feel like I'm just fine whatever my capacities are. Even just to explain yourself to other people every day sounds exhausting.

I also have extremely unsupportive family,but they are far away.

[jackiehyland]

I don't think it's that they don't care it's such a difficult complex disease even your own gp doesn't understand it he/she is just given a tsh blood test to go by and then your either treated or not depending on results . Even the experts have conflicting opinions but we're left with one medication and one blood test till someone finally knows what to do with us all but don't worry too much if you have just recently been diagnosed !! It's like opening pandoras box there are more questions than answers it will drive you crazy !!! If you decide to read things on this site remember we all have different symptoms but we're all on the same medication as strange as that sound. You won't get any sympathy from your doctor either just patronising looks and maybe a prescription for some forget medication known as antidepressants go private !!! Sorry for being so negative but we're all in the same boat and I havnt come across a particularly happy hypothyroid patient yet.

[MrsRaven in reply to jackiehyland]

jackiehyland, I think you've nailed it. We are essentially on our own with it. If you have a broken leg its easy, it can be seen, treated and you're done. Loads of sympathy while you're incapacitated, then back to normal. But hypothyroid is life changing. There is no normal any more. And most family members dont know how to cope with something they cant see. Its a bit like being asked to believe in ghosts.

[elwins]

I was lucky my late parents understood what I was going through, they fought when I was a child to find out what was wrong with me, my mother was just told she was a fussing mother when she said something was wrong, that was over 60 odd years ago. But thyroid problems are not understood by everyone even doctors.

[dang]

Yes I'm sure we all do. Don't expect anyone who doesn't have this condition to understand, they simply can't. I know it's frustrating, but they won't do the research, they don't feel how you feel, they simply won't get it.

Your family can be supportive without understanding, and if you go easy on them about understanding you'll find that balance.

We, the members of this community, understand you. We're here for you in that respect, so no need to put that burden on your family, I promise you they will only get frustrated themselves.

All the best,

Dan

[Gcart]

I have been diagnosed with cancer twice , thyroid and bowel.

Lots of sympathy then, but I coped with that. Seems to be understood and feared by most.

When it comes to the "one pill a day will sort it" for the rest of my life after TT this is where it has got hard.

On going chronic illness is the pits, very tricky.

It's an awful disease and hard to see the light some days .

Not many people even know what the thyroid does.

The endocrine system is extremely difficult to treat. I m sure you all know just how many symptoms it can give 😫

[jacrjacr]

I really don't blame them...b4 I was diagnosed I was very judgy on someone else in the family that had it thinking they were faking a lot of it and then after my own diagnosis I realize that it is impossible to imagine how much control this has over the entire body unless you have it......so I educate myself and tell my family what is caused by what medically by science so they can comprehend what is going on .....

[jacrjacr]

if you think about it....most can barely comprehend what is going on and how to address it and doctors leave you out on a limb because they are uneducated in medical training in this field as well and don't even understand and over simplify as well......so......their should be advanced training in the thyroid...for all that it controls...but most just believe in the tsh test no matter what ft3 ft4 says even when they measure it...