When others do not see your symptoms...
Has anyone ever made a comment about your psoriatic arthritis symptoms (especially the fatigue/pain/etc.) and your ability to work, go out, etc.?
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Not about my symptoms, but several have made remarks about me parking in handicapped parking, saying that I don't look disabled, etc and that they are for "old" people or only wheelchairs.
I try to make it to my grandson's football games, and last year I came back to my car to find a post it note on my windshield which read:
I saw you park and walk to the stadium, you aren't in a wheelchair and you aren't old, and you do not have a handicap placard in your windshield. You ought to be ashamed of yourself.
I am not going to lie. I was just feeling really down and I cried. If the writer had investigated, he would have discovered that I have a handicap license plate (which I got after getting a ticket for not remembering to hang the placard up). What no one knows except family and friends is that I also have MS and between these two horrible diseases somedays I walk fine, although I cannot walk any distances to speak of due to fatigue, some days I have to use my walker, and some days I have to use my powerchair because I just can't walk. The really funny thing was I had the bruno chairlift on the back of my navigator, not sure why he thought I had that since I am "fine".
You just have to let it not bother you. And yes, many times I just tell them what is wrong with me and shrug it off, but other times like this one I just can't. Good luck to you.
I too have to use handicapped parking (I have a tag and have taught my family and myself that as soon as we pull into the spot - the tag goes up. But it is hard to remember sometimes). If I have to walk more than about 500 feet, I have to use a wheelchair, otherwise I have a cane that is now considered a part of me.
I am ashamed to say that I was one of those people who thought if you can walk, you don't need the handicapped spot. It has taken me to have this disease to not question people, because we don't know what is inside them. People just don't understand that there is a lot going on that you can't see. It has opened my eyes.
I'm so sorry that you have had this happen. Just keep telling yourself that some people are clueless; either by not knowing or not wanting to know.
I'm so sorry to hear that happened to you, SuzLee001. It seems like these type of snide comments about the disabled parking spots are all too common....and it really needs to stop. You shouldn't have to shrug it off...because it shouldn't happen in the first place.
Sending a virtual hug your way...RebeccaThanks Rebecca, virtual hug right back to you.
Most days I don't let it bother me and if they say things to me directly, I inform them I have PsA and MS. I doubt that they ever do it to another person after that as they are so embarassed. Most have not heard of PsA, so we get into a discussion. Many people have not heard of us before. Including me when I was diagnosed in 2004, and I used to be an RN.
This usually doesn't bother me as the more people learn, the more informed that they are, and just maybe they know of another person whose symptoms might be PsA and they tell them about it and encourage a dr. visit.
True, true! In fact, I managed to convince a friend to go see a rheumatologist because she had plaque psoriasis and was having joint problems...and didn't realize she was at risk for PsA.
Mine is my mother. I hear (almost every phone call) that I don't need a nap each day, I just need to exercise. I have sent her articles and explained things every phone call and she just doesn't get it. She also doesn't get how this happened because no one else in the family has these issues. My father passed away 9 years ago, before this all happened. I miss him because he was a Corpsman in the Navy. I'm sure he would understand. But it hurts that I don't get the support from her. Thank God that my immediate family, especially my husband, understand. I had to give up scrubbing bathrooms and the kitchen (well, I do the daily scrubbing sink and counters) because of the pain in my hands and knees. I just can't be on my knees anymore. My husband said that it wasn't worth me hurting so he has a cleaning service that now does the scrubbing for me. It still makes me sad that I can't do it (I'm a full time housewife). But he said it was the least he could do to help me and to make my life easier. I so love that man!!!
That's so sweet of your husband!!!! I But I hear what you mean about being sad you can't do it...I have a hard time letting go of that kind of stuff. And then on days when I do feel okay, I push myself too much because I don't know the next time when I'll feel well enough to do something, so I want to cram in as much as possible. And then I'm in double pain the next day. Sigh.
