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Learning about My Disability

I’ve always considered myself lucky with my Rheumatoid Disease. My clinical symptoms don’t stop me from working, rock-climbing, and generally taking care of myself or my pets. However, recently I was truly faced with my disability and that, while I am still able-bodied, I do need accommodations.

RA disability & physical accessibility

I live in the Metropolitan DC area so strong thunderstorms are routine. It’s warm, it’s sunny, then the storm brings bursts of torrential rain and high winds, for all of five minutes. Sun comes out again and all returns to normal. One Friday afternoon, we also had a tornado watch and were evacuated twice in a row to the underground school gym.

Limited accessibility at school

Most people didn’t get out of the gym the first time before they shepherded us back there. I’ve always thought the school I work at is not particularly disability-friendly because there are only a few ramps and one elevator. At least it has an elevator! you say. True, but, it’s not entirely effective. The elevator is on one end of the school and often you have to walk the length of it to reach your destination anyways.

Making the best choice for my joints

A longer walk or difficult stairs?

My location during this tornado event so happened to be right next to the elevator, but the gym was one floor down and on the other side. It was much faster and mentally less taxing to take the stairs down, then up, then down again. While we waited in the gym the second time, a great tiredness came over my body. I had to walk twice as far and take the elevator.

Is it easier, less painful and better for my joints in the long run if I walk a shorter distance but take more difficult steps (like stairs)? Or, walk on an even surface for a longer period of time?

Which came first, the chicken or the egg?

My disability makes an appearance

Surprisingly, I wasn’t in bad shape the next day. I went through my usual weekend routine plus the extra tasks of washing and straightening my hair. These two tasks were reserved for special occasions and that evening so happened to be the annual school auction.

This was a black-tie event where the parents pulled out all the stops and wore red carpet-worthy attire. Me, still a tomboy at heart, opted for my favorite high heel boots. They were thick, about two inches tall and very comfortable.

Zero seating accommodations

I walked to the event, no problem, was standing, chatting to some people when I realized there was NO seating. There were individuals wearing three to five-inch stilettos! That’s a long time to stand in shoes like that. How could there be no seating?? My disability took its toll and within minutes I was suffering. I need to sit and there was no relief to be found, anywhere!

Face to face with my condition

Understanding that I need special accommodations

Long story short (too late) I was faced headlong with my Rheumatoid Disease. I had never felt so out of place before. I did a good job blending into my community, pretending I’m not in pain and most people never knew the difference. But, this weekend I realized I’m not an average 20-something anymore. I have a chronic condition and I do need special accommodations.

There are people who can help

It’s not ideal but I don’t think I’m embarrassed by it anymore. People trust and respect me and are willing to help. Once they know about my condition, they sometimes go out of their way to help. I spent so long hiding my disability, at work especially, but maybe I don’t need to anymore. I am good at what I do and my employers and my peers want to help me succeed.

Has there ever been a time where you were faced with your chronic condition?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • jack5225
    6 months ago

    I certainly felt your pain, as a very similar experience happened last weekend. Just 3 hours of being on my feet at a fundraiser, and I was down for the count. The dizzying fatigue appeared first. I needed to sit, and there was no place to sit. My swollen knees and feet just popped up out of nowhere. Now I’m fighting RA/RD in a monster flare. It was up to me to configure the amount of energy, and time standing that I could endure. I didn’t do that. It won’t happen again. Thanks for your article!

  • Kelly Dabel moderator
    6 months ago

    Thank you for sharing your story and feedback jack5225. So glad this article was helpful to you and hopefully reminded you that you are not alone. Wishing you some relief ahead. Best, Kelly, Rheumatoidarthritis.net Team Member

  • tckrd
    7 months ago

    The unfortunate stigma in this country is if you are disabled you are unable or not as good. I would still highly suggest to stop hiding. Lookout for the mean people that will say when you do something normal, I thought you were disabled.

  • Lawrence 'rick' Phillips moderator
    7 months ago

    As the husband to a person who worked in student disability services. I can say that going to that office is easy, they genuinely want to help out. I truly do. Please approach the disability services office, I promise life will be improved.

  • Monica Y. Sengupta moderator author
    7 months ago

    Oh 100%!

    It was might fault (at least for the auction) to not mention my disability. They asked everyone if they needed any special accomodations to which I said no.

    However, the layout of the school is a bit of a challenge. I’m sure they would gladly give me a wheelchair or something to navigate it a bit easier.

    They are very kind that way. It’s up to me to speak up for myself!

  • Lawrence 'rick' Phillips moderator
    7 months ago

    While in school Sheryl had me request dragon naturally speaking for my papers. One of the better things I have done. They bought me a wonderful software package which I still use sometimes.

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