I am recently diagnosed with Graves disease amd have found this site so helpful andceveryone very supportive.Well I hear today from a "friend" of mine who "doesn't do illness" that I will only make myself worse reading thissort of thing!This has come ffrom a third party who heard her say it.With friends like her I dont neef enemies.She was apparently hoing to have a look at this forum to see what symptoms they are filling my head with! So if your reading this I hooe you recognise yourself and are ashamed.Pure ignorance.Thankyou to all my genuine friends on here

60 Replies

  • Hi,

    Iv had this kind of thing said to me also....this site has never filled my heaad with symptoms that i dont have, its made me realise that my symtoms are very real and part of the illness.

    Im sure most people can relate to the negative feed back from some friends and family...dont worry the genuine people with genuine illness such as ours will understand.

  • Thankyou for your kind words. Thats true so many things have fall into place now I know whats wrong. I am a Yorkshire lass too!

  • what part of Yorks...

  • Sheffield.Where are you?

  • I was in Birstall...half way between bradford and Leeds...i now live in Lancashire

  • Hi,

    Do you this forum site is fabulous, the members tell you a lot more than the 'so' called paid professionals do at times... It's helped with my thyroid and with my lupus. My mum is of the generation of techno phobia.... Although, ill herself she doesn't believe you should look up things on the net...and then asked me the other day to look up something! People sometimes don't understand because we don't always look ill , then how can we be ill...I say walk a mile in my shoes some days and you'll surely find out!

  • Hi thanks for replying. I know some people have no empathy.Dont wish bad health on anyone but one day they might be ill and bet they would change their tune then!

  • In my experience, no. This type of person when they do get ill is a special case and they will do exactly what we've been doing but it is ok for them and they will go to great pains to justify their special case status - you (we) will still be wrong in their eyes! GRRR!

    Bitter me, no, never ;)

  • "Don't do illness"! PMSL Reminds me of the French & Saunders two old bags who'd amputate their own limbs without anaesthetic and carry on life regardless.

    Your "friend" is obviously morally and mentally superior to the rest of us mere mortals.

  • Thanks clutter you made me laugh I remember that sketch from French and Saunders!

  • My mother-in-law (now deceased) disliked and disapproved of me because I was ill and in pain so much. She used to tell me that I should be stoical and carry on regardless because nobody likes people who are ill all the time.

  • Thanks for reply humanbean(love the name) dont think my mother in law was too keen on me eother for same reasons!

  • I am sure that 'none of us did illness' till we became unwell!!! I still cannot get my head around how much my life has changed to be honest, and until you walk in these shoes no one well ever truly understand...All I know poor health will come to us sooner than later, for the lucky ones that means with old age, but sadly for us that means the here and now...

    Nearly all my long term friendships 30+ years have not stood the test of my illness. Lets hope she never has to suffer as she does not sound like she will have the strength needed to cope!!!!! Good riddance I say....

  • Thanks for reply missdove.Exactly.People dont realize one condition can cause multiple symptoms or it dosnt last a week like flu and then go away.Next time I see her and she asks how I am I am going to say amazing!After all we who have chronic illnesd and get by are amazing!

  • Hah! I'd tell her you don't have the energy to spare for back biters "who don't do illness".

  • Your right I am going to have to toughen up aand stick up for myself a bit more! I am useless at confrontation will have to stop being such a wimp

  • You, we are not wimps...We are amazing for sure! Try not to waste too much of your precious energy on her, you have bigger things to be getting on with x

  • I can but sincerely hope your friend develops any form of thyroid disease and fails to get diagnosis or treatment because that kind of friend you simply do not need

  • Thanks reallyfedup for reply.Yes you certainly find oit eho is a fair weather frienf ehen you are ill

  • Excuse mistakes been awake all night!

  • This support has been beneficial and enlightening to know I am not alone in this struggle.. So called professionals have been a big let down,thyroid uk and it's members have been supportive, informative and know more than the professionals. When I go on some people think I am mad and it's in my head..... Well it is not this proves it.... A wealth of experience......

  • Hi nattyg thanks for reply.I agree I was the one whose GP made the comment I dont understand tsh but I have heard of it!

  • Well said! It has been said to me that because I know more its may be not good for me! Any sensible idea that works for me is wonderful and where do I mostly get this help? Well on here! Thank you to everyone who posts and replies. Its a steep learning curve as we know but lots of us are improving and not feeling so isolated and long may the site continue so a special thanks to all our admin.

  • Hi siverfox maybe they say that because they realise they wouldn't understand

  • It can go the other way, too. I have a friend who is hypothyroid and from a family that 'doesn't do illness'. She doesn't want to know her test results and cannot tell me when I ask her what her TSH is, she is consumed with guilt as she is letting the family side down and unable to accept her illness.

    So keep going on this site which is where you will find people who can understand and inform you about your condition, and often help you to get better.

  • Hi romulallupine thanks for replying. Yes I will certainly stay with this site and learn as much as I can to help myself amd others

  • I have a very simple rule for people like that and I stick to it. It's one word. "Goodbye". People like that are an emotional drain and you don't need them in their life. What she said has nothing to do with you or how you are and everything to do with telling you about herself, her need to be "right" and her need for attention.

    You aren't the right person to help her, so leave her behind.

  • Thankyou rosetrees very wise words think you hit the nail on the head there

  • I actually have friends on thyroxine who refuse to learn more about their treatment and continuing symptoms whereas I have learnt about supplements here and how to read my test results to manage this condition as best I can. It takes all sorts..................

  • Hi jexebel thanks for replying. Yes it takes all sorts! One suits one doesn't suit another.My daughter is only in her early twenties and has autoimmune arthritis only midly thank goodness at present. She wont discuss it or take meds.She is an adult and its her decision. However she should respect my choice to be informed about my condition too.

  • Thankyou everyone for your replies.I have had a giggle to myself at some of them! Had I not gone on this site my full knowledge of Graves disease would be what my consultant told me which is it affects your thyroid.I will keep on learning as much as I can and helping myself and others as best I can.

  • I get the same kind of nonsense from my elderly father. He's constantly moaning at me for "reading stuff on the internet and then saying I've got it too". Utter nonsense! It can be difficult to deal with when people you care about say this, but the best advice is just to ignore them. If you *have* to deal with them (like I have to do with my dad - I can't just walk away from him, obviously!), then simply don't say anything at all to them about your health. I've given up trying to talk to my dad about health issues now. As far as he's concerned I'm just a hypochondriac and there's absolutely nothing wrong with me.

  • I yes its particularly hard when its a family member.My adored dad died 5 yrs ago and I helped nurse him at home with the wonderful marie curie nurses . funny thing eas the robust members of my family went to pieces all huddled upstairs when the undertaker came for him crying and carrying on.I was the one who dealt with it all.I think when you have chronic illness in many ways it makes you stronger.My family are a healthy lot who have never had to deal with anything unpleasant and couldnt cope.I am pleased and proud I coulf be with my dad till the end.

  • I wrote a poem about judging others. The last verse goes:

    "Not one of us could truly say

    'From that water I would not drink'

    Until a dry and stony road

    Has brought us, thirsty, to the brink."

    We can never know until we are in the same situation, how we would cope. That is no friend. To quote the Bible: 'A friend, in time of need, is a friend indeed'.

  • Those are lovely words marram sometime if you couls spare the time I would love to read all of your poem, Sadly some peoples philosophy is a friendl in need is a nuisance!

  • How quick we are as humankind

    To judge each others’ weaknesses,

    Instead of reaching out a hand

    With gentle words and kindnesses.

    What could we lose by showing love

    To those who are in need today?

    The need tomorrow could be ours –

    Would we want them to turn away?

    In ignorance I would condemn

    Those who chose to fight no more,

    Until I glimpsed my own abyss,

    And could not bear the sight I saw.

    Not one of us could truly say

    “From that water I would not drink”

    Until a dry and stony road

    Has brought us, thirsty, to the brink.

    (C) M Cadavieco 2009

  • That's really lovely. Thank you

  • Thank you!

  • Thankyou for the full version of your poem marram its beautiful you have a talent there

  • Thank you, I'm glad you like it.

  • brilliant , actually states the full thoughts of many , many of us --and others ..........is it published ? ....alan

  • Such beautiful words Marram - thankyou :)

  • Most GPs & doctors seem to take the same view - that the internet is a source of worry for patients looking for "new" symptoms, rather than the source of genuine information, education & support that it is for so many of us. While there are undoubtedly some people who "adopt" the symptoms they read about, most of us are able to read objectively & assess the credibilty of information, especially with practice. Being generous, if doctors had the time to allow all of us to ask all the questions we need, there'd be no need for groups like this one So they should see it as a good thing!

    Maybe your friend, never having suffered an illness that is pretty poorly understood, even by doctors, has never needed to ask a single question about her own health. More likely she avoids even thinking about it, recognising in herself an INability to be objective, and fearing what will happen if she thinks too hard about it. Let's hope she never gets ill - she'd never cope.

  • Thats true midwinter she has omly ever had colds and she cries then because she cant breath.My endo when I asked for my blood results after starting treatment told me my tsh but said I didnt need to kmow my t4 and t3.I will not mention names but I am sure many members eill recognise him ig I say he is a very controversial professor!

  • I WISH our local gps would study the internet sites . They would learn a lot.

  • Very true paigie

  • there are some out 'there' that do ----- my own gp has stated to me directly that he personally has learnt so much from my information to him [ mainly gained from this site ] that he is currently taking this knowledge into the classroom [ he is a consultant lecturer at a major teaching hospital ] .......alan x

  • That's impressive !!

  • What a nerve. If only she knew. Graves' disease is such a horrible condition to have (I know, I've got it too) and I didn't really 'do' illness until I got it, but I would say I was sympathetic to others who were ill and wouldn't have dreamt of judging them, I bet none of us were actually out there searching the internet looking for an illness we could have.

    This group is great, I have had so much support and learned so much from everyone on here. It has really opened my eyes to all sorts of things, from how much some people suffer and some of us don't half suffer to how much medical treatment and professionals can vary. It has been a real eye opener.

    Like you say I hope if your friend ( or should I say former friend!) is lurking somewhere on here, she realises just how ill you are with Graves even if you don't look ill. She should be absolutely ashamed of herself.

    Just you hang on in with us and don't bother about what anyone else says. Do what makes you feel good. :-)

  • Thankyou so much for your reply fruitand nutcase(love the name) and for your support, As I am getting getting better I can see things more clearly and realise I have put up with alot of rubbish from people.No longer the new me starts today!

  • I get this from family all the time, (I'm obsessed) & friends are few and far between when you don't turn up for various gatherings. Yet I think I'm a stronger person for finding my weakness, I can understand folk better and perhaps give pointers to help a bit, it could be seen as a gift to see someone else's view (being in chronic pain sure didn't feel like a gift 'tho!).

    By the way - this site is linked to the NHS and doctors can see too, so we're not that radical & it isn't the 'big bad web' anymore - most decent docs use it to learn too! Mine didn't know about Dupretrens and just told me to google it!

    The world has moved on..... J x

  • Thanks spareribs yes thats true you do become more caring of others when you have problems yourself.I like to think I see others point of view and empathise with them .Suppose if I had sailed through life I might have been less tolerant

  • In my experience those who "don't do illness" are the lucky ones who never get ill and are fortunate to enjoy good health, therefore they dont need to take any interest in spending any time having to try and improve their health, causing them to be unfairly unsympathetic to others who have health problems!!!

  • Thanks gor reply fixit.Such people are very fortunate to have good health but ogten don't appreciate it

  • Your "friend" (I'll use the term loosely) is clearly just lucky enough to have never been sick.

    I'd never done illness either before Graves disease nearly killed me thanks to a storm!!

    I hope for her sake she's lucky enough to never need the help of a forum

  • Thanks for your reply. Yes that can be very serious . Anyone would think we choose which illness we have and she disapproved of my choice! When I told her it ead Graves she said make your mind up it was overactive thyroid last week.Should have seen the warning sign there but I let it go.Never again

  • You certainly don't need "friends" like her! We don't ask to have this illness but it is good to have the encouragement and support of like-minded people on this site, so we know we are not one our own.

    Forget about this person and move on. You are worth more than her. Take care now xx

  • Thankyou for reply glo42 .Yes I have had more support on this site than from people I have never met than I ever have had from her and we have been friends for many years.best wishes

  • Just after I was diagnosed with Hashimoto's, I was discussing the hypothyroidism thing with a bunch of women along with the fact that I had been told by the doctor that I would be taking thyroid for the rest of my life. One of the women looked at me in total disgust and told me that her best friend had also been diagnosed with Hashimoto's but had refused to take thyroid supplementation. She implied that I was being an idiot for taking the thyroid because that was a DRUG (she was big on natural remedies). Apparently, the best friend in question did a lot of running and had made the decision to 'run' through the need for thyroid - she was NOT going to take pills. Needless to say, I've never been near this woman again - but I've always wondered what happened to the best friend.

    Don't 'do' the friend!! Who needs enemies when you have friends (or family) like that!

  • Hi thanks for replyswmartin some people are so ridiculous arnt they just have to be right about everything! Why dont they just mind their own business? Take care

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