Today I finally felt I had some energy then was blown away again when my partner announced thyroid illness was nothing significant ...... apparently it can be treated by meds !!!!
Advice please for unsupportive partners - Thyroid UK
Advice please for unsupportive partners
Written by
karenmyring
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42 Replies
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shawsAdministrator
They say ignorance is bliss. We were all ignorant before we were diagnosed and what a struggle it has been to get better and some haven't as yet succeeded or even been diagnosed..
If your partner ever got a thyroid gland problems which affected every single cell in his body that he couldn't function, sometimes not even think straight, he would be sorry he ever made that comment.
I will say no more as many people think we are hypochondriacs by expecting our doctors to know how best to treat us but not allowing us optimum or alternative meds to give us back some semblance of good health and saying 'it's not your thyroid' when we know it is. How do we know, because our health is returned, symptoms (not due to thyroid) go when we eventually find a way and it is only by medication for the thyroid gland.
Thank you x sometimes I think I am going mad and feel so alone every day is a battle my gp is terrible
I hear you, and feel the same.
Does your partner know that you participate in this site? Perhaps you could show him/her some of the things written here, including some of the polls (e.g. this one healthunlocked.com/thyroidu..., and also remind him/her that we have 14,000 members - and those are just the people who've managed to find us, and maybe suggest he/she browse through some of the categories here on the right. Jane x
hashimotoshealing.com/how-t...
If he can be persuaded to read the links and letter below he might begin to get it:
stopthehttp://www.hashimoto...
thyroidmadness.com/2014/02/18/open-letter-to-physicians/?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+StopTheThyroidMadness+%28Stop+The+Thyroid+Madness+Blog+Newsletter%29
This letter, "I am Hashimoto's Disease", via Gena Nolan's FB page Thyroid Sexy, has helped many people explain what Hashimoto's and hypothyroidism is, and how it can debilitate us when not treated correctly.
"I am Hashimoto's Disease"
Hi. My name is Hashimoto's. I'm an invisible autoimmune disease that attacks your thyroid gland causing you to become hypothyroid.
I am now velcroed to you for life. If you have hypothyroidism, you probably have me. I am the number one cause of it in the U.S. and many other places around the world.
I'm so sneaky--I don't always show up in your blood work.
Others around you can't see me or hear me, but YOUR body feels me.
I can attack you anywhere and any way I please.
I can cause severe pain or, if I'm in a good mood, I can just cause you to ache all over.
Remember when you and energy ran around together and had fun?
I took energy from you, and gave you exhaustion. Try to have fun now.
I can take good sleep from you and in its place, give you brain fog and lack of concentration.
I can make you want to sleep 24/7, and I can also cause insomnia.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
I can also give you swollen hands and feet, swollen face and eyelids, swollen everything.
I can make you feel very anxious with panic attacks or very depressed. I can also cause other mental health problems. You know crazy mood swings? That's me. Crying for no reason? Angry for no reason? That's probably me too.
I can make your hair fall out, become dry and brittle, cause acne, cause dry skin, the sky is the limit with me.
I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight. I don't discriminate.
Some of my other autoimmune disease friends often join me, giving you even more to deal with.
If you have something planned, or are looking forward to a great day, I can take that away from you. You didn't ask for me. I chose you for various reasons:
That virus or viruses you had that you never really recovered from, or that car accident, or maybe it was the years of abuse and trauma (I thrive on stress.) You may have a family history of me. Whatever the cause, I'm here to stay.
I hear you're going to see a doctor to try and get rid of me. That makes me laugh. Just try. You will have to go to many, many doctors until you find one who can help you effectively.
You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.
There are so many other ways I can make you sick and miserable, the list is endless - that high cholesterol, gall bladder issue, blood pressure issue, blood sugar issue, heart issue among others? That's probably me.
Can't get pregnant, or have had a miscarriage?
That's probably me too.
Shortness of breath or "air hunger?" Yep, probably me.
Liver enzymes elevated? Yep, probably me.
Teeth and gum problems? TMJ?
Hives? Yep, probably me.
I told you the list was endless.
You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away.
You'll be told to think positively, you'll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you've seen, just how debilitating I am and how ill and exhausted you really feel. In all probability you will get a referral from these 'understanding' (clueless) doctors, to see a psychiatrist.
Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be.
Some of them will say things like "Oh, you are just having a bad day" or "Well, remember, you can't do the things you use to do 20 YEARS ago", not hearing that you said 20 DAYS ago.
They'll also say things like, "if you just get up and move, get outside and do things, you'll feel better." They won't understand that I take away the 'gas' that powers your body and mind to ENABLE you to do those things.
Some will start talking behind your back, they'll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a "normal" person, and can't remember what you were going to say next. You'll be told things like, "Oh, my grandmother had that, and she's fine on her medication" when you desperately want to explain that I don't impose myself upon everyone in the exact same way, and just because that grandmother is fine on the medication SHE'S taking, doesn't mean it will work for you.
They will not understand that having this disease impacts your body from the top of your head to the tip of your toes, and that every cell and every body system and organ requires the proper amount and the right kind of of thyroid hormone medication for YOU.....Not what works for someone else.
The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand.
I am Hashimoto's Disease.
in reply to Clutter
Clutter that is an amazing explanation.Is there anything similar do you knoe for Graves desease/hyperthyroid? Thanks
Clutter in reply to
I'm sorry, I don't, P1pp1ns. I was Hashi/ThyCa/HypoT and I only took an interest in Graves 'cos my sister had it until she had RAI.
Thanks for this Clutter, I have not came across this letter before, it's really good. I hope it will be ok for me to print out.
Yes, it will be fine, Evey. The websites it's been posted on encourage people to print off and give to family and friends to explain the illness/es.
How did your endo consult go?
Thank You for asking, Clutter. He did not discharge me! will see me in three months but Refused any change in Levo or to give T3 and had Never heard of NDT !!! I definitely knew more than he did ! Why am I Not surprised? Time to buy my own meds I think.
I'm just trying to type up a post about it but getting nowhere, may have to leave it until tomorrow ?
I actually posted this to my facebook page
very moving and mostly TRUE.......
That is a lovely letter Clutter, almost made me cry!! xx
You are just brilliant x
Hope it helps x
Hi, karenmyring, I do hope your partner reads your replies and links, also the letter from Hashimoto's Disease ! My husband Refused to read Anything, as He knew all about It ? as he lived with me! Preferring to believe our gp,- that I did Not have Thyroid Disease! but was Mad, a Hypochondriac, Lazy, Get Some Fresh Air and Exercise and I'll be Fine! etc.....I wish I had managed to persuade him, both of us had came through cancer, but it was MY illness? (nothing to do with Thyroid, remember!) that tore our 28 years together apart! Please, ask him to listen to your side of the story. I am sending you a big hug and my very best wishes.
your partner seems to be a fully qualified member of the ' stick yer head in the sand nhs brigade ' ---- does he work in endocrinology ?......because he sounds very much like some of the doctors that others on this site have [and still are ] to put up with ...... he NEEDS to gain knowledge before commenting or advising and to understand what he is then commenting on and stating as fact [ supposedly ]......... alan x
Hi it is a man thing! It is very easy for them to be supportive in the short time but not long term with any illness, unless a\rare man! When I am dying , especially in hospital, my husband rages at me, as cannot cope, then walks off. If lying in bed helpless it is horrible. They just cannot cope.
Find a supportive friends but even then people do not want to know too much about any illness, unless it is theirs!
Best wishes,
Jackie
Yes this is so very true, we are all selfish and I find that people are becoming more and more singular, not necessary their/our faults but life is hard out their and compassion seems to be lost now wherever you go, and this is very sad.....
This sounds like me over the last 19 years, wish I could get Armour on T4 and T3 now, just got the T3 from NHS Endo last week, already taking Cynomel, no difference yet and would like to try this Armour
Hi Karen
My (ex)partner was exactly the same, I literally dragged myself around when previously I had energy to spare. It is terrible when people don't support us, I think sometimes they dare not because then you might take advantage of them & get 'worse'....
Even after I was diagnosed with cancer he still expected me to be the way I was when we first met, it is hard to explain why the medication etc isn't working!
All the other advice was great...if I have of known of this website back then I think I would've strapped his head to the computer till he memorized every bit of it, then I'd have him rub my feet! Lol dream on... Best of luck & I do hope he gets it soon! Ps I believe my ex's 'bad' attitude stemmed from his friends & their ignorance etc (lazy, depressed, weak, 'given up', fat etc) & he just took it on board, hope yours has better friends xx
So glad I don't have a partner these days, but I do know what you mean. My daughter is so caring of her friends whether they're depressed, upset or unwell in any way, yet seems totally uninterested in what I'm going through. When I've been shopping I am totally exhausted, I can't lift stuff on a good day, but I hate that I have to ask her to help me get the shopping out of the car boot. She never volunteers. All I need is a cuppa, but she doesn't even offer to make me one.
Wouldn't it be nice to hear, 'are you OK? Is there anything I can do to help?' But I guess it's too much to ask.
My other daughter thinks that maybe she just doesn't want to accept that I'm unwell. Could this be what's happening with your partner, ostrich syndrome?
We're going to have to be tougher Karen. Let them look after themselves for once and stop running round after them. Maybe they'll get the message that we can't do it any more? It could be worth a try.
I do hope he gets to understand soon. Take care. Xx
marmaris in reply to
Hello wasterspace I feel this way, having brought my two sons up now 19 and 21 with this illness, now at 57 feel really tired and depressed and I get low because I have done everything for them and do not feel appreciated at all.
I must be very lucky, my husband is amazing and very supportive. I tend to be the one who thinks I should be able to do things, because I don't "look" ill, and he is the one who tells me to take things easy. I had to give up work a couple of years ago (unrelated surgery, then the old Hashimoto's went overboard) - I am the one doing the guilt trip for not "contributing" to the household, he is the one who rings to check I am sitting and watching TV!
He asked me to print off some info about Hashimoto's (gained from this site), and started accompanying me to endo and GP appointments. He read the "I am Hashimoto's" that Clutter posted, amongst other very medical info. I don't know how I would manage without his support, and you have my sympathy, karenmyring.
I would also suggest printing off some info for your partner - don't bombard him with too much in one go!
Mine is too and like you I consider myself lucky.
I think it's unfair to label this a male or female thing. Alan (above) seems a very supportive partner while wasterspace's daughter is unsympathetic. And certainly there's no point letting people off the hook because they're male or female. We're all responsible for supporting the people we love and if we're not good at it it's our responsibility to get better or at the very least refrain from making it worse!
I guess that it can be such a long, ongoing disease, there isn't a nice, easy cure, and it affects everyone so differently. I have family members with thyroid disease who are, apparently, fine (not necessarily my view) - and there isn't much understanding that other people might be affected in a different way.
I think getting support from other people with similar problems, like on this site, is great; but it isn't much help on a day-to-day basis when seemingly small household chores don't get done, or you just don't feel capable of having a shower in the morning.
Amen - there's nothing like hands-on, in-real-life help. And thank goodness my partner isn't some sort of cleanliness fascist. He's not bothered about whether I have a shower or not. 
I think it is definitely a good plan not to wash your hair before ever having an appointment with a doctor, it is always good to go looking particularly drab. I am also particularly impressed with my ability not to smile at said appointments.
Oh so true! I am definitely planning to go next week looking like s*%&. And the chances of me managing a shower every day?? Nil
thank you so much for your comment above , but I personally consider myself to be supportive as well as being supported ---- it is always a two way thing --- AND BOTH/ALL HAVE TO BE APPRECIATIVE and work together ----- we have been together for over 33years [ im still trying to remember when I broke the 5 mirrors ..yuk yuk ] ....WE WILL ALL GET WHERE WE WANT TO BE WITH PERSEVERENCE AND HELP ......lastly it is not a 'male thing ' but it is an idiot ,ostrich, head in the sand , it aint happening to me so I don't want to hear about it SYNDROME .......alan xx
Oh absolutely, but the important thing is that it is going both ways and not just the one. Excusing some people because they're male is an injustice to all the loving and supportive men in our lives.
I agree, alan, and what a shame that some people seem to have forgotten that they supposedly love their partners. It must be darned hard work living with me, I like to think that I would be as supportive if our roles were reversed.
we all have it within us ---if we want it to be there --- and never forget that with karma ALL roles will be reversed at some time .......and I am very well aware that I am a bugger to live with [ sometimes ] as we all are ..... we just need to look at ALL perspectives and understand others perspectives and adjust OUR outlook and expectations .......in my view its called life and living ....alan xx
Well said.
Some great ideas and support below. Just a ha'pennorth more: I wonder if you could find a man who suffers with thyroid disease (not that many about, apart from our friends below) for your partner to talk to? The divide between the genders is never so wide as when ill health is at issue. Long term ill health frightens people of whichever gender. And they quickly get bored by it. Unfortunately :0(
My best male friend is very supportive whereas my ex husband - when we were married, was not at all helpful either to his mother who was severely disabled with RA, or myself when I was Ill leading up to and following my hysterectomy. Ironically, he now has Hypothyroidism and type two diabetes and his partner has terrible RA. I am in no way wanting to be vengeful, we get on fine these days, but could this be Karma maybe?
I'm on my best behaviour because I wouldn't want karma to visit me!
alangardner in reply to
karma is a two way thing ...... the more good karma you give out -- the more good karma you will get back ===== and therefore the same goes for bad karma ....... just concentrate on sending out the good karma .........IT WILL RETURN ......alan x
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