RA Daydreams: A Disease Genie

RA Daydreams: A Disease Genie

Living with rheumatoid arthritis can feel like a nightmare, which sometimes leads me to daydreaming about things that would make this journey a little easier. 

Diagnosed with rheumatoid arthritis/rheumatoid disease (RA/RD) nearly two decades ago, I’ve (mostly) come to terms with many aspects of living with this disease. I’ve come to accept that there will never be a moment in my day when I’m 100% free of pain, and I’ve learned to block out low-level pain from my focus. I’ve accepted that I’m going to be on medications for this disease, and that this can be time-consuming (visits to the infusion center) and unpleasant (needles and side effects).  I’ve also accepted that if I move too little or too much, I am going to have an increase in pain and/or inflammation.

Accepting these things, however, doesn’t mean I like them.

Rather, accepting them means that I’ve stopped fighting them. Rather than asking “Why?” I more commonly ask, “What can I do about it?” Yet, there are a few nagging areas of life with RA/RD that I struggle to accept more than others. These are the challenges that lead me to daydream about having things a bit easier.

While searching through my shoes for a pair that might be the least painful to wear, I thought, “Wouldn’t it be amazing if I had a Disease Genie who could grant my wishes?” Of course the first thing I would wish for would be a cure, but this fictional Disease Genie isn’t a diaper genie that can dispose of the disease entirely. With a regular genie one can’t wish for more wishes, and with the Disease Genie you can’t wish for a cure or for symptoms to completely disappear. Given those parameters, here is what I would wish for:

Wish #1: Comfortable Shoes

Shoes have become the bane of my existence. It’s too painful to go barefoot, and it’s incredibly difficult to find a pair of shoes that doesn’t press on my inflamed toe and foot joints, or make my ankles, knees, and/or hips hurt. If a Disease Genie appeared, my first wish would be for a closet full of cute, comfortable shoes in a variety of colors and styles that would make every step feel cushioned and supported without causing any pain. I would be able to exercise more and end a day less fatigued, without footwear adding to my pain level.

Wish #2: Flare Forecast

With fashionable comfort covered, my next wish for the Disease Genie would be for an accurate flare forecaster. It is so frustrating to look forward to an outing or event, only to be in a flare when the day arrives. A social person, I hate cancelling plans with friends and loved ones when severe symptoms keep my homebound. Again, since the rules of this game are that I can’t wish for my symptoms to disappear, I would wish for a flare forecaster that could tell me exactly how I’ll feel on a future date. That way, when I am trying to decide whether to host a gathering, accept an invite, or plan a trip, I could consult my flare forecaster and find out whether I’ll be up for fun or down for the count on any given date.

Wish #3: Social Understanding

This may be the RA equivalent of wishing for world peace, but my third and final wish from the Disease Genie would be for everyone to instantly understand chronic disease. If others knew what it meant to live with a degenerative health condition, they would understand that if I have to stay home because my body hurts, it really is because my body hurts and isn’t anything personal. If I have to miss work, I will work that much harder to catch up when I return, as my absence is in no way reflective of my level of commitment. And while I may “look fine,” that definitely doesn’t mean I feel fine. If everyone understood chronic illness, no one would downplay my self-report simply because my symptoms aren’t showing on the outside.

Those my three RA/RD wishes. If you had a visit from the Disease Genie, what would you wish for?

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