I really think my family & friends think Im a hypochondriac
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ssela81 posted:
I am sure there are a lot of people on and off of this board that feel the same way. It's a horrible feeling when you can't say exactly how or what you are feeling because you can just imagine the rolling eyes or the ignoring you would get. My husbands family is a very hard skinned family. Anytime I am sick or cannot move (which happens many times a month), I feel ignored. I have 3 children; 6, 3 and 2. My 6 year old is in school all day but the other two are home with me day in and day out. When Im sick, and they know it, there are no calls or no drop by's. Its as if they don't want to help. Or even bother to offer their help. I always have to ask and I always feel like a burden.
Any tests that I'm having done, I get "oh thats probably nothing". I hate those words because it may as well probably be nothing but the stress of having any percentage of it being "something" is worse. I never get any heartfelt feeling from them.
Now my husband is very sympathetic. But I dont want sympathy. I want to be healthy and I want to be able to want to take my children to play in the park. He will come home from work when he "needs" to. Its never "I'm coming home", its always "do you need me to come home". Instead of just realizing that when I text or call and say "hey Im stuck or I cant move or Im sick", Im obviously calling you for a reason.
I was never one to ask for help. It kills me to ask for help. I was always so independent, so alive. Now, not so much.
I end up in the hospital at least 3 times a year. This year alone it was because I was vomiting so much that I needed 3 bags of IV to get me out of dehydration. It was so bad that my muscles were killing me all over my body. Turned out to be nothing. As my in laws predicted. Another time my face was drooping. Husband raced home, took me to the ER. Saw the dr and he asked me to do some expressions that you wouldnt be able to do correctly if a stroke happened. I did it. Turned out to be nothing. Again...
It just drives me crazy that these people, among friends that Ive lost, believe there is nothing wrong. And this is because they don't hear about Lupus like they do Breast Cancer, or MS. Lupus is a serious disease. I think it's even worse than BC or MS because you NEVER know which way this disease will turn. Never.
I recently contacted the Lupus foundation to see what can be done to bring more Awareness. I want to see LUPUS commercials on TV. I want to see Purple products on stores shelves like I see Pink Nike socks for Breast Cancer. Thats what I want, besides a cure for this nasty nasty disease.
I own an automotive website called www.custolight.com and I have owned and ran it since 1999. In January, I want to start donating to the Lupus Foundation from every order we receive. I sure hope that helps inch everyone in the foundation to push for more awareness.

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lisatru62 responded:
I know what you mean. No one understands Lupus completely, even doctors. I spend over ten years trying to convince my doctor that I was sick before I got a diagnosis. They think we are a bunch of hypochondriacs. My family is even worse. I tell them I'm sick and can't help them with their problem and they act as if I didn't say anything and continue on as if I'm going to be there for them.

I have always been the one who has been there for them and helped them with their problems. I have also been the shoulder to cry on when things go wrong. They just haven't been there for me now that I need them.

I've heard them whine about how horrible it was to have the flu this week or how they had to pay for something expensive not realizing that I have the flu everyday of the week and my medications are a constant expense.

People don't understand how debilitating this disease can be and how much we have to give up just to do the basics. It is so disheartening to have people who are suppose to support us unconditionally think it's all in our heads because we look alright.

My family is starting to understand as I've lost 40 pounds in the past six months. I can only say I feel your pain and hopefully they will turn around.

Lisatru62
 
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ssh49tn responded:
Boy, can I relate! I was diagnosed in August with lupus, & know very little about it, so am learning as I go. However, NOBODY that doesn't have lupus can really understand what we go through. So far, I'm not having too much trouble with illnesses, but depression is really knocking me for a loop. I take an anti depressant, plus an anti anxiety med for that. And, I have had unexplained dizziness since last July, that they cannot figure out. Some days I'm so dizzy I can barely lift my head,other days, it's not too bad. But, so far, nobody has understood what I'm going through. Some days it's a chore just to get out of bed. And, house work is a joke. My family has never treated me like I'm a hypochondriac, but I still can't help but feel like they think I am. I had a TIA in May, & they put me on blood thinners for that, & I haven't had any more trouble with that. I am a Christian, so prayer has played a BIG part in getting me through this. My family loves me, & if I need them for something, are right there, but they all have families that they have to take care of, so I understand them not being available a lot of the time. God bless you, & just hang in there!
 
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ssh49tn replied to lisatru62's response:
Amen! It's even harder for me to not BE the one they can depend on. I think that's what makes me the most depressed!