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Old 10-17-2009, 12:42 PM   #1
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Do people around you understand?

Do you notice the people around you understanding or even trying to understand what is wrong with you? I'm unfortunately finding that my family does not understand nor do they really care to make an effort to do so. My husband understands, he gets that this is not something I can control or snap out of. He knows it'll take time and proper treatment before I am 'me' again. I'm eternally greatful that at least he understands this. My children are too young to really understand (ages 4,2,1) but they know mommy is sick right now.

My mother told me to 'rest up' and I'd feel better. My older sister's wonderful comment was that I'd feel better if I lost some weight and moved more. Another sister said 1 toddler makes her tired.. she supposes 3 could make you really tired. I just bite my tongue and think, *oh really?!? Wow... I never thought of these things.* Thinking that way is what kept me from seeking help for years. Looking back now I realize I've probably been dealing with this for easily 5-10 years and just didn't connect all the different issues to a single cause. I did just think I needed to lose weight, but dispite constant diet my weight crept upward.

I guess the best way to deal with it now is to just get well and then when everyone asks what I did to get well just tell them I'm treating my hypothyroidism. They seem to think weight gain is the only symptom and that it's something that might be 'bothersome' but they don't realize is debilitating.

Do those around you understand? Is there a way to make them understand?

 
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Old 10-17-2009, 03:49 PM   #2
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Re: Do people around you understand?

I agree with you, majority of family/friends/coworkers don't understand. Some don't wish to understand, some find it difficult comprehending the intricate issues/symptoms of this illness.

Most people i know simply say "but you look so healthy" or "well aren't you taking your daily medication.... you should be fine then". They have no idea once you get this that it can take varying lengths of time to feel better, normal or great as it depends on the individual and their symptoms or how far gone they are with this disease.

My mother doesn't understand, no matter how much i explain, she simply feels sorry for me and i hate it when she looks at me with those sad eyes as though i've got cancer and i'm dying. Most of us aren't looking for sympathy, just basic understanding of how things are. I'm sure my work has thought from time to time that i'm making it all up.

Fortunately i don't have children and my main symptoms were tiredness, hair shedding and irregular menstrual cycles. Even though i'm hypo with Hashi's i never put on any noticeable extra weight. That just goes to show how random the symptoms are. Being 'hypo' doesn't mean we will all have exact same symptoms or exact same text book case of problems or recovery process.

If i were you i'd forget about your family and their comments. I appreciate it's hard as you think your nearest and dearest ought to be your support base. The main thing is that your husband understands. Your kids are too young so they can't be expected to be concerned about what's going on.

All you can do is take things a day at a time. You will learn a lot from this board and there are likely additional things your doctor can test as thyroid issues can spread out and affect other areas, not just the thyroid, which can lead to some of the symptoms you have. Unfortunately we can't always leave it all up to our doctor as often they don't do the proper testing or never test certain things or simply believe you should fall into a 'range', rather than meet a 'target'. This is why it's important to do lots of research on your own and learn as much from other people's experiences too. It does take time to start feeling better and as everything begins falling into place so will your weight issues.

Best wishes

 
Old 10-17-2009, 11:58 PM   #3
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Re: Do people around you understand?

I have Graves and Hashimotos, still untreated by my endo, and I have alot every symptom there is! I have better days than others, but I find most people don't really understand unless they experience it. One of my freinds is bi-polar and sometimes gets depressed with the weather changes in the winter and I don't really understand what she goes through, that helps me put it into perspective at least.

My husband understands and he listens which is nice. I try to explain to my mom sometimes but I can tell she doesn't understand and when she doesn't say anything I feel like I am complaining and I am a hypochondriac which isn't true.

I have backed off telling people stuff about it now. I tell my husband and only when friends ask. They understand when I am tired to the extreme.

 
Old 10-18-2009, 02:55 PM   #4
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Re: Do people around you understand?

it does hurt alot when especially those the closest to you don't understand. i also have a very supportive and understanding husband and my children also know mommy is sick. it is the HARDEST thing i have ever done in my life. i am not the same person i used to be. part of my grieving process has been to "let go" of that idea that i can be and do everything i used to do and be. one of my closest friends said that if i would just relax and eat whatever i want and just enjoy life i would feel better. going through this process i have developed a lot of food and environmental sensitivities and so i have stayed away from those "list"of items and boy that was a doozy to take in when she said that..she also suggesteed that i do it for attention. which is the furthest thing from the truth. i am not the type of person who likes to draw attention to myself. she also thinks that the natural apporach is crazy. i have had to distance myself from her and have to not allow what she says to get to me...unless she has this happen to her she will never get it, and truthfully i would never have imagined that this type of chronic illness existed. it is terrible to live with anxiety attacks. there is a great book that talks about energy suckers ...make a list of those people draw boundaries and try to be around those that support you. your won't be in this boat forever. it takes time to heal.

 
Old 10-19-2009, 02:35 AM   #5
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Re: Do people around you understand?

Everyone in my life knows I'm sick, but I think they're getting tired of hearing about it. It's understandable since I've been hypo for almost 2 years now trying to find a decent doc, but it still hurts when they stop asking how I'm feeling or don't comment when I say I'm not feeling well. My parents especially since they give me guilt trips when I don't act concerned for them when they're sick. My employer knows I've been sick, but still gets upset with me when I make mistakes, even though I explain I'm doing the best I can. It's very frustrating and it makes you feel very lonely and alone in the world. I'm very thankful for this board for that reason.

 
Old 10-19-2009, 06:06 AM   #6
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Re: Do people around you understand?

I've been suffering symptoms for many years, it made me feel like I was a hypochondriac, or at least I thought that's how others thought of me. I stopped telling people when i felt like crap, I just plodded along keeping it all to myself.
When I got married, I told my husband little bits when I wasn't feeling good, but I'd blame it on a bug that was going round, I figured people would understand more, if it was something they could relate to. People would sometimes ask "why are you tired a lot?" I would simply blame it on not getting a good nights sleep, or I'd blame it on a busy day at work, infact I'd blame it on anything I know they'd relate to.
It wasn't until my symptoms progressed so much that I couldn't hide it anymore, I always figured, the doctors didn't understand, how in the heck can I expect the people close to me to understand!!
My husband would get irritated because I'd forget to pass an important message on to him, my family would get irritated because I would miss a lot of family outings...etc
My husband started to get concerned because of my ever increasing tiredness, started coming home with multi-vitamins for me to take... Then one day he came from the shower and told me he had unblocked the drain and it was full of my hair, he would ask me why I lose so much hair when I wash or brush it.
I slowly introduced him to the world of Thyroid Disfunction, I told him my nanna, my aunt and my mother have it and I think I have it too. Surprisingly, he sat down and asked me how I was feeling, asked me what symptoms I was having, then he went on line to research the condition to educate himself. I wasn't surprised because he's an uncaring person, I was surprised that he was understanding and wanted to know more. Once he knew a bit about the condition he was making appointments for me to go to the doctors, when the tests came back within normal range he wanted a second opinion. That's when I came to this board, I showed him some of the post's on here and he couldn't believe how many people were suffering undiagnosed with this!!! He told me to forget about my doctor and to find one that will listen and understand, I found one but he doesn't take insurance. My husband told me to go ahead, he didn't care how much it would cost, he just wanted me to feel well. It's so nice now having someone around who understands what I'm going thru, everyday, he asks "How do you feel today"? If I'm having a bad day, he understands. It's amazing just having one person who gets it, how one person can make you feel you're not going insane.
I had all my bloodwork done, now I'm waiting to go to my appointment next week.

 
Old 10-19-2009, 08:40 AM   #7
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Re: Do people around you understand?

The only person in my life who truely understands is a friend of mine who also has thyroid problems and is going thru the same thing.

 
Old 10-19-2009, 10:33 AM   #8
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Re: Do people around you understand?

Aaah~ That is my husband. We don't have insurance and I've been putting it off making excuses, saying it's something else and he finally said that no he knows it isn't this or that and I need to go get it taken care of regardless of the costs. I'm excited and nervous about my apointment on Wednesday. I'm just really hoping this doctor listens and will want to try and help. Just knowing what is really wrong has helped a lot... now to get treatment started.

 
Old 10-19-2009, 10:48 AM   #9
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Re: Do people around you understand?

mamahippo: We don't have insurance either, when we did have it, I was going to my regular doctor who didn't listen because my results were normal. I mean, I went to doctor after doctor telling them I couldn't function, I even started to egsagerate *is that the right spelling? my symptoms just so they'd help me. They all said it's possibly my thyroid, but when the results came back they dismissed it as stress or depression. Not one of them was prepared to investigate why I felt so bad, I just don't see how a doctor can rule out a diagnoses then not ask themselves "well what's wrong with her then, lets find out"!!! But no, it's "lets send her home and let her carry on suffering"!!

I can't wait to go to my new thyroid doc, I've seen tons of good reviews about him, I'm also like you "a little nervous"...heehee!!

I hope you get the care you need, I just wish i would've came to this website years ago, because now I refuse to let the doctors tell me there's nothing wrong with me, when quite clearly there is.

Good luck, please post after you've been to your appointment and let us know how it went.

 
Old 10-19-2009, 11:30 AM   #10
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Re: Do people around you understand?

My Husband is supportive, but I know deep down He has got to be just as frustrated as I am. I had my thyroid taken out in April 09 because of cancer and have felt like crap ever since Dr, says my blood test ranges are good so no change in meds. I work a full time job getting up at 2:30am for work is extemely difficult it seems all I do is work and sleep.. most days I am basically useless, I cant keep up with the house anymore, I rarely cook anymore, laundry is always piled up. Some days I just don't see how I can go on another day I am just sooo tired, but I have to I carry the only insurance my family has. BTW I have 2 boys ages 21 and 14 that doesn't seem to understand cause no matter what I say they will not do anything unless they are asked at that moment and I feel like I shouldnt have to ask...I have told them if ya see it needs done do it..anything you do helps ALOT no matter what it is well anyway Ill stop whinning now.

 
Old 10-19-2009, 12:10 PM   #11
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Re: Do people around you understand?

Aahhh, my endo started out with the correct testing, she listened to me and she didn't mind that I am fairly knowledgable about the thyroid and when I ask for specific tests she has no problem doing them. She thinks I have other things going on and was investigating. She hasn't treated me. My TSH is between 3.0 and 6.4 so far and the last time I saw her, I became soured with her. I has neck tenderness and I explained to her that I am so extremely symptomatic, far more than anyone else I know with thyroid problems and how can I feel this way and yet no treatment. (I was basically challenging her.) She said she didn't know what to tell me about how I am feeling. That REALLY PUT ME OFF. I went to my regular doctor today because I have a new tender pump on my neck (she thinks part of the thyroid like a flare up) and she suggested I should find another endo. I feel completely and udderly dead inside.

I love, love, love to clean. I feel things not getting done. Laundry doesn't get put away until days later, if it actually makes it to the room, stuff like that. I can barely go outside in the mornings and I pray to make it home because I have to rest and take a nap. I am mad because today I can't nap and I am tired to the extreme. My daughter has a dental appointment in the mid-afternoon and then we are making an offer on a new home after that, so I have a lot to do today.

 
Old 10-19-2009, 11:13 PM   #12
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Re: Do people around you understand?

My story is a little different. I actually left my husband and 2 days later found out I had thyroid cancer. Now 3 months later, I am living with my parents with my 4 kids and starting school again. It really is tough when you don't have a spouse around to help support you and understand. But I do have my parents who have been so great to cook, clean, and do our laundry.

I hear you about the naps. I have been feeling really tired all the time, don't want to get up to bring the kids to school!

But the important thing is to keep going. I have found that as long as I keep looking forward I can have peace about my situation and hope for a better future. Even if hope is all I got, it's better than nothing!

 
Old 10-20-2009, 06:37 AM   #13
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Re: Do people around you understand?

Aawwww, it brings a tear to my eye reading both of your posts, it rings so many bells for me. It's absolutely horrible feeling that way. I hope you both can find a doctor who will listen to your symptoms and not go by lab work only. It's a struggle, but there is light at the end of the tunnel once you find a doc who understands.

 
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