hello everyone I have been diagnosed with hyperthyroidism, graves and hypertension for four months now. I m staying with my aunty and her family no one seemed to care about it and I have stopped explaining everything to them.
so now my GP advised that I should see the ophthalmologist since my eyes are getting worse and let the endo specialist focus on the other area. So I decided to tell them I m going to see the eye specialist and they say no you have a swanky eye your eyes are normal like that, I m very confused I don't know what to do or how to explain this to them they don't go with me for my reviews I bring my record no one seemed to care look, my blood pressure is just uncontrollable at the moment.
Please note I pay for my medical bills.
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TanyaPrudence
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Graves is a difficult health issue to understand, even if you are the person dealing with it and the eye swelling is very upsetting as you are visually reminded every time you look in the mirror of some stranger looking back at you.
Did you contact the TED charity mentioned to you previously - tedct.org.uk
Did you have the follow up appointment and what was said and do you have a copy of the results from the blood test and have any of your medications been adjusted up or down ?
Did you try some Preservative Free eye drops to ease your eye burning -
Have any symptoms eased off ?
I too have Graves Disease and the eye swelling - and my extended family don't really understand - ??
I have hypOthyroidism not hyperthyroidism, have had for almost 50 years. My experience is that family and friends have no understanding and therefore no interest, the only people who do understand and may be interested are those who have the condition themselves. I don't discuss it with anyone else (other than here) because it's just a waste of time and energy.
From time to time there are posts on here suggesting letters which you can give to family and friends who may not understand your problems.
I used the 'Search' option looking for 'letter family'. Here are links to some that I found. Hopefully you can find something that fits your problems and what you want to say.
All I can say is I think I've been really fortunate with my family as I've always received support and sympathy. Then again my mum had Rheumatoid Arthritis, my late father had pulmonary fibrosis, my in laws have various stuff like Diabetes and mother in law has had issues with overactive thyroid, she had an RAI a few years ago.
So coping with chronic illnesses themselves clearly made them more sympathetic. My husband is my rock and my sons work for the NHS. I dont feel fortunate with my health,but I am very lucky with my family.
I’m glad you are seeing an eye specialist. I would check that they are a TED specialist. I saw several ophthalmologists before seeing a TED specialist one. As previously mentioned, TEDct helped me find a recommended practitioner in my area.
I need to wear sunglasses even indoors on some days due to light sensitivity from TED have had a few comments about me sporting a ‘rock star’ look. I’m lucky as my family are very supportive. Always remember you can reach out on this forum; we are here to help & support.
TanyaPrudence, as you can see, people here care and support you. I'm sorry you feel unsupported by your family. Thyroid conditions are difficult to explain to any other who hasn't experienced this for themselves.... mostly it's not because they don't care, it's simply difficult for most of us to understand something we haven't experienced.
Here, you are finding others who do understand, as we will have experienced at least some of what you are experiencing.... and can ( and do) offer advice and support.
Please know you are not alone. Is there a friend who can give you a hug? x
I also think that thyroid, like many other condtions, is an invisible illness. You look ok on the outside, you're not limping, using a cane or a wheelchair. You dont have a guide dog or have limbs missing.
Unfortunately many people have a very black or white view of disability or chronic illness. Unless you look visibly unwell or disabled you must be alright.
I wonder if these people aren't actually in a state of denial deep down, because as we all know a chronic illness can strike anyone, at anytime. Doesnt matter who you are, how nice a person, how well off, successful or good looking you are. Its no protection. It can literally happen to anyone and does.
I think that's scary for lots of people, that randomness. So its easier to pretend it doesn't exist and that people who are unlucky enough to be ill just need to get on with it and put on a brave face. Also being confronted with illness can force people who know the sufferer, either family member or friend to face upto their own mortality, and fragility which can be uncomfortable and frightening.
I'm not trying to make excuses, because I think it really sucks if you can't show understanding and empathy for someone struggling with chronic ill health. But I suppose I'm trying to understand why they act in such a shoddy way.
What you could do is find a picture of the worst example of TED you can find on the internet and say to your family that this is what might happen if you don't get your eyes treated.
But I agree with SeasideSusie . Nobody understands diseases that they have never had, and sympathy is hard to come by in most circumstances. People understand or sympathise wth heart attacks, strokes, and cancer, and at the other end of the scale they understand colds and possibly flu - but even then their colds and flu are always worse than anyone else's.
would showing them something like this help? I don’t have Graves (Hashi’s) but my close family struggle to understand that ‘taking a pill’ doesn’t instantly cure it.
Image showing areas of the body affected by Graves Disease
I have psoriatic arthritis, Thyroid cancer and have spent the better part of the past 6 years living in hell and when I start to stress about my issues I talk to my mom and she always say your ok it just “stress” as if somehow my recurring thyroid cancer and wide spread pains from the psoriatic arthritis that have crippled me is all because of “stress”…… Do what I do stop telling them or explaining I truly believe they mean well but the emotional toll of being dismissed is horrible and makes you feel as if your a hypochondriac.
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Some questions about thyroid eye disease.
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