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Old 12-09-2004, 07:08 PM   #1
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Do people in your life understand your illness?

Hi, all-

Do you ever feel as if people are looking at you as a weak individual because you have a thyroid disorder? More often than not, it seems that people misunderstand and misjudge me. Because thyroid disease has so many manifestations, it can (and does, I fear) appear to others as if I am a hypochondriac or someone who simply wallows in my misery without doing enough to help myself. Many hypothroid symptoms (excluding weight gain, of course) are not visible to the uneducated eye. This makes it difficult for sufferers to receive empathy, IMO. Heck, if we can't get our doctors to understand us, how can we expect anyone else to do so?

Thoughts?

All input will be appreciated.

Thanks in advance,

LT

 
Old 12-09-2004, 07:35 PM   #2
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Re: Do people in your life understand your illness?

Yes, Loves Teaching....and what a shame it is too. For example, alot of people KNOW I'm trying to lose weight, and have successfully lost 80 lbs....BUT in the last year and half it's been a struggle. I don't get anywhere fast. Then I get discouraged, and "allow" myself a "break"...but honestly, I feel that people don't BELIEVE ME that I'm actually eating properly when I'm trying so hard. It's doubly frustrating. One because your disappointed in the lack of reward for effort...and secondly because you look as though you don't have credibility. AND I HATE the second one just as much as I HATE the first one!!!!!

Plus, now that I'm trying the Bioidentical Hormone Replacement Therapy as my NEXT (and hopefully last) effort of finding success....people who have watched me "try" several things have almost "discounted" my new venture. This is what really hurts. It's as though they are thinking "oh...that poor girl....you know, she's just setting herself up AGAIN."

Heck, I've even had someone say to me "You know, honestly, I get SO SICK of ALL THE TIMES I've heard people say "I think I've got a THYROID PROBLEM!" and my internal reaction to that statement was "...well....they probably DO!" lol

So, basically Loves Teaching, I've learned to IGNORE THEM..and IF I find this attitude coming from them~ no MATTER WHO gives it off to me ~ I tune them out. I identify THEM as either sincere "support" or NOT! Same with my thyroid condition...it's not MY job to EXPLAIN to them. When I find myself in the mode of "explaining" it usually means I'm looking for their approval or acceptance of me, in a weird way, and I QUIT DOING THAT! I don't really CARE if they "get it" or not! I don't have the energy in me to spend time conviencing them, nor the desire!

Ever since adopting THIS attitude, I'm much less concerned over anything else but ME!

Besides, having this condition has taught ME to have more understanding and compassion for others! That's a good thing!

 
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Old 12-09-2004, 07:37 PM   #3
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Re: Do people in your life understand your illness?

a very smart ER doc told me once that if you worry about being a hypochondriac you can't be one! hypochondria is a mental illness and those with it could never ask the question or worry about being percieved that way because They know they are ill! To answer your other question yes I do worry about people thinking that and I spend a lot of time being a perfectionist in other areas of my life to try and make up for the times I am so sick. This I am working on! My family is supportative most of the time and the rest of the time they act like yo yo's, that is a good thing because then I know that they are treating me like a normal person.

 
Old 12-10-2004, 04:12 AM   #4
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Re: Do people in your life understand your illness?

Before the doctor gave me medication, I spent approximately two years suffering through sleeping through the day and generally being unable to live any sort of life. I spent four years fluctuating between feeling bad and feeling OK. I gained 50 lbs that year and my cholesterol went to 268. Of course, since the doctors said that there was nothing wrong with me, everyone looked at me as lazy and I know that my husband thought that I didn't like him anymore (no libido, either, I was too busy sleeping). During most of this time, my TSH was between 5.45 and 7.9, but all the doctors I saw said I wouldn't feel any symptoms at that level. They don't medicate unless it's above 15, they said.

It came to a point when I was having a hard time believing myself. I thought it was possible that I really was just fat, lazy and stupid (that's how I felt all the time and that's how everyone, except my husband, thought of me). I tried exercising and it knocked me down for 4 days. Every month before my period, I had to take 3 days off work to sleep. I used all my vacation time by July (almost 6 weeks). My husband tried to be supportive, and did a fairly good job of it, but I know it was hard for him to watch his wife become a non-responsive slug with doctors telling him there's nothing wrong with me.

Now, my husband is absolutely my greatest support. When I say "I don't think the medication is working so well", he already knows that. The difference in the slug I used to be and the person I actually am is so dramatic that he can usually tell when I'm having a rough time, as I start taking naps, etc. My new DO is pretty easy to get along with. Even if she doesn't think I need a dose increase or a med change, she will let me try it to see if it helps. As she says, they want to make me feel better, not get my lab tests correct.

It's been a pretty good couple of months once they got the dosage correct. Just as a side note to those of you who are still stuck with doctors that won't help you, don't give up. In 4 years (1998 - 2002), I went through 9 doctors before I found the one I have. I know that sounds daunting, but there are still doctors out there that care.

 
Old 12-10-2004, 04:23 AM   #5
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Re: Do people in your life understand your illness?

Lynn, Benzi, and Karen,

Thanks for your replies.

Lynn, I wish I could adopt your attitude, but because I've had a very bad year with this illness, my work situation and personal relationships are somwhat at risk. I've had to cancel plans with friends more times that I can count, and I've also taken too many sick days at work. Being a teacher, it's hard to miss work (the students suffer, and my students have special needs and don't understand why I'm absent so often). My boss is not exactly the most empathetic woman, either. It seems that she thinks I should just "suck it up" and go to work regardless of how I feel. I can do that sometimes, but not always. I'm going through a bad spell right now, and it's tough.

Benzi, I can relate to being a perfectionist (particularly at work). I work above and beyond what's expected of me when I'm actually there. That's the reason I still have a job (the powers that be think I'm an excellent teacher). My family is supportive, but I can tell they don't understand what's wrong with me (and since *I* don't fully understand what's wrong with me, it's hard to explain it to them).

Karen, I'm glad you're doing better and have found a doc that is willing to listen and treat your symptoms. I have an appointment scheduled for next Thursday with a new endo. He's supposedly one of the top docs in NYC and specializes in all of my issues. I sure hope he can help me, because the endo who's been treating me since 1988 is obviously not doing enough for me.

Thanks again for your replies. It helps to know that I'm not alone.

 
Old 12-10-2004, 07:25 AM   #6
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Re: Do people in your life understand your illness?

NO they do not. I am not getting much support. I get "well if you would run the treadmill about 45 minuts a day you might get some improvement."
Or why are you walking like that? How can you be so stiff your only 35" or this is my favorite one..... Do I need to put a sticky note on your forhead?

But its ok since they dont understand. Its my illness and my problem. I am just thankfull you guys are here to listen to me be out of control. I do not have that luxury in my every day life.

I decided to be a wife 18 years ago and a mother, so I must always put that first. When it gets to be too much I just take a personal time out from them with the excuse that I need to go to the grocery store.(no one goes with me there) I know what it is like to worry about everyone you care about so I don't let on to them so much. Plus it seems to come off like a weakness or that I am complaining. I did have a great support after the surgery but that was becouse they could actually see the slice in my neck. It was something tangable. My family is of the "show me" mentality.

 
Old 12-10-2004, 06:57 PM   #7
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Re: Do people in your life understand your illness?

Sheritap,

OUCH -- that "sticky note" comment is so nasty! I can't believe how cruel people can be (Even if it's meant in jest, I don't find a remark like that to be humorous). I guess I'm sensitive about memory issues because I used to have an incredible memory, and now I seem to be suffering from thyroid-related CRS.

I think most people are of the "show me" mentality. I received support at work when I showed up after my biopsy with a badly bruised neck. That sympathy waned quickly, though (not that I'm seeking sympathy -- I'd much prefer empathy).

Thanks very much for your reply.

 
Old 12-10-2004, 07:59 PM   #8
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Re: Do people in your life understand your illness?

Loves Teaching,
I think one of the reasons docs and maybe other people don't understand how we feel is because most people with thyroid problems don't have the extreme symptoms that those of us who seek out support on forums such as this do. The mentality is "If Susie X's TSH is 32 and she's just a little tired, then Kathy Z can't be feeling as bad as she says she is when her TSH is 'only' 6."
Let me tell you something about TSH. It means NOTHING! I was suicidal when my TSH was 8.6. My symptoms were severe. But a few months later, my TSH was 32.7 and I was feeling fairly well. Go figure.
No one who hasn't gone through this can ever understand it. I used to expect my family to understand and that's a pretty tall expectation. They understand my disease about as well as I understand what having cancer is like. I never had cancer.
I lost a job I had for 17 years thanks to this illness. I was on FMLA for 6 months. I used up all of the 5 weeks vacation I had that year. It was a horrible year for me. But I made it through the tough times. You will too. You'll find a doctor who will help you and you will get better.
If you want to talk to someone who understands, keep coming back here. We have all been through it in some form or another. Hang in there.
Barb
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Old 12-10-2004, 08:06 PM   #9
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Re: Do people in your life understand your illness?

Here's a link to a thread I started just after I found these boards. It deals with this subject.
http://www.healthboards.com/boards/showthread.php?t=105129
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Old 12-12-2004, 12:04 PM   #10
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Re: Do people in your life understand your illness?

Bosmom,

Thanks so much for sharing your story (and for posting the link containing others' stories). It does help to know that others have been through this awful period and are now feeling stronger and healthier.

I have an appointment with a new endo scheduled for Thursday after work. I sure hope he can help me.

Thanks again,

LT

 
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