Tales of the Unexpected

[Oneinthehand]

How do people react when you tell them you have a thyroid condition? Is it with understanding? Surprise? Confusion? Curiosity? What have you come to expect?

Confession: I don’t really tell people. Why? Is it that my reserved nature? Do I fear other peoples’ reaction? Am I loath to admit to something which isn’t “normal”?

Those I have told (I say “Underactive thyroid gland”), have reacted with, “Euhhh? What?” I explain but still get a glazed look, indicating I lost them at the word “gland”. Not much different when I told a Dentist friend.

I recently admitted to one friend that I had been struggling with energy. Didn’t batter an eye lid, she changed the topic. I tried again, only to be brushed aside yet again. Too embarrassed though I’ve explained the thyroid thing previously? Too wrapped up in their little world? The latter I sadly suspect. I won’t make the same mistake again.

One shining knight is a friend who took the trouble to ask what he doesn’t understand and has proven an invaluable support as a result. I don’t see him often but I know he is there for me. He offers ideas, listens to my answers, gets me thinking. He doesn’t judge, just asks and allows debate. Another friend has Hypo in her family and so understands to some extent but Hashimoto’s causes confusion, still I appreciate that she cares, takes an interest.

Your turn: How have people reacted when you’ve told them? Was it as you expected? What surprised you?

Footnote: Don’t be shy, please do leave a comment. I’d really, really like to know what you think. You’re the only people who understand!

[RedApple]

Oh goodness, I could almost write a dissertation on this! But I won’t - well not here anyway

Personal experience tells me that the overwhelming majority of people can’t relate to something that isn’t totally visible. So, break your leg and you’re likely to get tea, sympathy and practical help by the bucket load. Get a thyroid problem and you’re on your own You’re perhaps more likely to get a sympathetic ear if you talk about visible symptoms such as hair loss, weight gain and dry skin than non-visible problems of fatigue and muscle weakness.

I think one of the biggest surprises to me was the realisation that even people who themselves have thyroid issues, often don’t understand either. It seems that although there is a lot of common ground, we don’t all suffer the same symptoms, or at least not to the same degree. For example, some people apparently don’t experience any significant cognitive / mental problems and thus don’t relate to how that aspect affects things for those that do.

[Oneinthehand]

RedApple,

Think you've hit the nail on the head on both your points. People need to see illness to understand/realise. I think that is why thryoid conditions are so misunderstood. Also for some people taking the little pills works wonders, for others, symptoms continue to persist.

[Chippysue]

This is quite a major point in my illness. I have lost friends as they just dismissed my comments of how ill I felt as they kept saying they knew someone who is hypo and fine.

My sister and I haven't spoken for 18 months since she sent me an email informing me that my problems were not thyroid related but due to depression. She told me that I was making matters worse by talking to others and that I just needed to go for a walk.

Recognition that I have been ill for a long time is all I need and sympathy is a bonus.

I find that when I am on my mobility scooter people ask if I have CFS and they do look bewildered when I say that my thyroid is to blame.

I could go on and on, one friend said that I should keep going back to my GP as though I hadn't told him properly.

One friend recently asked me if I wanted to go with her to salsa dancing, I think it would wear me out to watch it on tv!

Hey, maybe we should start bandaging a part of our body??

[Hidden]

I never realized that the illness could actually be affecting a person more than his / her depression because of it. This is quite an eye opener for me Suze; and OneInTheHand.

[Oneinthehand]

Suze, sadly I too have found family far from understanding. I'm not sure why this is?

Mozart, the annoying fact about thryoid conditions is the vast range of symptoms that people have and the degree to which these are endured. It makes it all very difficult for people to understand.

I'm fortunate that I've not had depression but for some people it's their most obvious symptom, however, we'll both still have thyroid conditions.

[Chippysue]

I do think it is a matter of whether people "get it" I met a "dog walker" friend in the park yesterday who I hadn't seen in a long time (I was too ill to walk my dog).

This is a fit 74 year old lady and fully engaged in a conversation of how I was doing now, she just "gets it" and the other key word is "recognition" as she recognises that it has been disabling and highly frustrating. I felt so much better after talking to her and told her so!

[Rachel]

I have had family members say 'well he looks alright to me' when we first told them that my son had hypothyroidism. I think it was their way of trying to offer support but I found it quite undermining considering everything we have gone through with scans and blood test since James was born and the fact that he has been on medication since he was 12 days old and will do so for the rest of his life.

On the other end of the spectrum we have had neighbours who everytime we left the house at first would ask if we were going to the hospital because they thought that's all we were ever going out for now!

[Hidden]

I am still not diagnosed going to first endo appt tomorrow. TSH 2.7 but a list as long as my arm of symptoms which go back at least 8 yrs. The fatigue, weight gain, low level depression, high cholesterol etc etc etc all despite healthy lifestyle!! I will be glad at some point to say oh yes the diagnosis is - and I think it is Hypo. But about what others think. There are 1 or 2 that are really good, my partner seems a bit bemused - I think he will be glad when I can get treated or whatever it takes - I have also had a work colleague who goes to the pub several nights a week will sit and eat pasties at her desk at lunch and smokes 30 a day - say she had been feeling like me and her GP has just told her she needs to cut down in a lot of areas - 'did I think maybe that would help me' - by the way, I eat salads and healthy stuff because I am too damn scared to encourage more weight, I don't smoke and I maybe drink a couple of glasses of red wine at home on a weekend - GRRRRR!!! I am not being virtuous but flipping eck. There is the other comment I've had about my age and maybe I should just understand that of course I will put weight on at my age and maybe I just need to up my exercise regime.

Sorry just had to let off some steam. But seriously, I no it sounds weird to some wanting to be told there is something wrong with me - but I feel like poo every day and I need to hear - yes you have so and so - so I know I am now losing the plot.

Stacey