Invisible Symptoms
Who out there is dealing with "invisible symptoms"? I never really knew how to express my feelings regarding this issue until I got some information from my insurance company. Yes, my insurance company.
I got a massive envelope in the mail the other day and it was filled with articles on multiple sclerosis. I had already seen about half of them on the internet but some were enlightening. It wasn't that it gave me any information that I wasn't already aware of, it just made some of it more valid, at least to me.
*"Symptoms such as fatigue and weakness are invisible.They can occur without a person showing obvious signs of illness. When this happens, family and friends often expect too much from the person with M.S. M.S. fatigue is frequently perceived as laziness or lack of initiative. Under such pressures, it is not uncommon for people with M.S. to doubt themselves. One person with M.S. said "Don't let others 'should' on you." *
Some people more than others understand the invisible symptom factor and are always there to remind you to not do too much, or to rest before you start to feel bad. I know I sometimes feel guilty about that even though I know it's what's best for me. I think we need to know that those closest to us understand what we are going through and that we need to do what's right for our health. I always appreciate when someone (usually my mother) makes sure before we go somewhere or do something that I don't push myself past my limit. And she'll check with me periodically to make sure I'm okay. I think it's important for people to do that because then we don't have to always feel like we're the bad guy. The last thing we should have to be worried about is that people think we are complaining.
* National M.S. Society
I got a massive envelope in the mail the other day and it was filled with articles on multiple sclerosis. I had already seen about half of them on the internet but some were enlightening. It wasn't that it gave me any information that I wasn't already aware of, it just made some of it more valid, at least to me.
*"Symptoms such as fatigue and weakness are invisible.They can occur without a person showing obvious signs of illness. When this happens, family and friends often expect too much from the person with M.S. M.S. fatigue is frequently perceived as laziness or lack of initiative. Under such pressures, it is not uncommon for people with M.S. to doubt themselves. One person with M.S. said "Don't let others 'should' on you." *
Some people more than others understand the invisible symptom factor and are always there to remind you to not do too much, or to rest before you start to feel bad. I know I sometimes feel guilty about that even though I know it's what's best for me. I think we need to know that those closest to us understand what we are going through and that we need to do what's right for our health. I always appreciate when someone (usually my mother) makes sure before we go somewhere or do something that I don't push myself past my limit. And she'll check with me periodically to make sure I'm okay. I think it's important for people to do that because then we don't have to always feel like we're the bad guy. The last thing we should have to be worried about is that people think we are complaining.
* National M.S. Society
posted by Miss Chris | 12:25 PM
5 Comments:
Taizen Maezumi Roshi wrote an interesting book called Appreciate Your Life
You need to inform your immediate coworkers, close friends and any family you contact. No one else.
MS is treatable but chronic, and there is no cure. Patiently insist on the right to pick and choose activities. If necessary, sweetly inform the person that you may have overextended yourself and now need to rest.
If they tell you you don't seem tired, then thank them very much! You are pleased you don't look the way you feel. And get some rest before you do.
This strategy also works for watchdogs who insist you don't need a disabled sticker for your car.
Uhhh, I have a question. Do you think tireness and fatique are really "invisible"?
They are not in me. People know when I am tired and/or fatiqued. My outgoing personality suddenly changes into a quiet, "hey, where is she?" kind of wallpaper falling off the wall kind of person.
You can't miss me when I'm fatigued and/or tired. I don't have to say a word. Duhhh... of course I am busy taking out my pillbox of provigil, klonopin, baclofen, topamax, and if needed ultram. If that isn't a clue then they are DENSE little children in adult bodies.
However, I disagree with pb (hope that's okay!!!) because I'm deaf too and since I've been deaf all my life, I find it easier to simply inform all people (not passerbys, duhh) of my deafness (makes MY life easier) and I can say the same for MS.
I think having a previous disability has given me the ability to cope with yet another disability. You simply let people know the deal. Most people are extremely understanding and are eager to help (if too much, so what?) and your life is easier.
Just my ten cents worth.
I was advised NOT to disclose by my neuro, who had seen previous discrimination in the area.
When I finally disclosed, I was immediately on temporary lay-off. My supervisor felt the "vacation" would do me good. I practically had to threaten a lawsuit to get my job back. My immediate supervisor interceded on my behalf, saying he needed me there in the department.
That was over 10 years ago. Perhaps things are better now that way, but I doubt it. I am looking for additional part time work, and I will certainly look only in the morning, and only for morning work. Otherwise, I am sure that the discrimination will rear its ugly head.
After some twelve years, I harbor no illusions about the local businesses. I keep my diagnosis to myself.
Maybe some day. But today is not that day.
Ten years ago- was the baby days of ADA. ADA has meat behind it now and employers are deathly afraid of it now. I know, because we used to have a family business for over 20+ years. The ADA puts the fear in the hearts of employers, and GOOD!
Of course some choose to abuse it (pffft on those who do) but I strongly believe in the the powers that be- and that's the ADA. I used to work for a company (before my family business) that found jobs for people with disabilities and found that employers were scared to death of the ADA. It wasn't necessary to be scared of them, just willing to accomodate. Ahhhh, long story...
But that's my opinion and my experience.
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