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?

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

View Comments (18)
  • mcadwell
    5 months ago

    Wish One: All the doctors in the world would feel what we feel.

    Wish Two: No flares are allowed

    Wish Three: All symptoms aren’t gone, just transferred…to an asteroid heading for the sun.

  • dzander5
    2 months ago
  • Tamara Haag moderator author
    5 months ago

    Hi mcadwell, Those are three wishes I can definitely get behind! Thanks so much for sharing! All the best, Tamara

  • CynthiaV
    7 months ago

    I’ve wished for each of your wishes especially #3. I used to say I wish I had a RA wand and that I could tap ppl with it so they would hurt how I hurt, feel exhaused after taking a shower just as I do, to know what it’s like to forget directions or the simple word to describe those things hanging on the windows (curtains) or what it’s like to have to be somewhere in 20 minutes but be unable to find shoes my swollen feet can fit into.

    I’m not cruel, I don’t wish for ppl to suffer those afflictions forever, as we do. Only long enough that they would understand how it truly feels to suffer from RA or any other chronic illness. But I’ve just about given up on that dream. It seems ppl are too busy to care.

  • Tamara Haag moderator author
    7 months ago

    Thanks for sharing, CynthiaV! I certainly can relate to that wish. I wrote another RA Daydreams article about a wish for “I-Know-RA-Spray” that could be spritzed on anyone when lack of understanding is apparent. In case you find it helpful, here’s the link: https://rheumatoidarthritis.net/blog/ra-daydreams-i-know-ra-spray/

    While most people in the world don’t get what it’s like to live with RA, we certainly do in this community, so thank you for sharing and being here.

    Wishing you all the best,
    Tamara

  • Tamara Haag moderator author
    7 months ago

    Hey CynthiaV, I’m so glad to hear that you find comfort here! This is a hard road to walk, but sharing with one another about the challenges does make it less lonely. Thank you for sharing your thoughts and for being here! All the best, Tamara

  • CynthiaV
    7 months ago

    Thank you Tamara. I look forward to reading your, “RA Spray” article. I’m guessing I’ll enjoy it very much. Keep up the great work! Even when I am feeling at my lowest both physically and emotionally I find kind and understanding friends here and articles that prove to me I am not alone. Bless you.

  • rockcandi
    7 months ago

    I love this idea of a disease genie! I’d definitely wish for your #3 wish. I’d love for everyone to instantly understand for many reasons but my main wish would be for my husband to completely understand. He’s already sympathetic but he gets frustrated often and aims it at me instead of with me. I think he’d also stop telling me what I should be doing and how, ie household chores and taking care of our toddler. I also love Rick’s idea of it telling us what meds will work. I’m so tired of wasting so much time (& hope!) on medications that either don’t work after taking them for so long, or that cause such horrible side effects that I have to stop w/in a couple months. And my last wish is sort of like yours about knowing about upcoming flares. I’d modify it to tell me when I’m going to have good days so I could make plans for proper house cleaning, activities with my son, & doing things outside the house.

  • Tamara Haag moderator author
    7 months ago

    Hey Rockcandi,

    Thanks so much for sharing these wishes! I can definitely relate! I’m sorry that you share the struggle that many of us with RA have of trying to get loved ones to understand. In case it’s of any help, I wrote an article with the hopes of helping people without RA understand what it’s like to have it: https://rheumatoidarthritis.net/living/have/.

    I know how hard parenting with this disease can be, so please continue to reach out anytime you’re feeling frustrated, happy to have a good day, or anything in between. Thanks for being in our community!

    Gentle hugs,
    Tamara

  • Lawrence 'rick' Phillips
    7 months ago

    4. A test to tell us before we take a biologic medication if the medication is likely to work or not.

  • suann
    7 months ago

    We have a test now called dna, it will tell us what we have and which medications will best treat it and a phd doctor gave us authorization to have it done bcause my granddaughter had gotten post-pardon psychosis with almost 9 mo. past and she still has it..The phd said this test will tell us what all is wrong and the best meds that work for her..Maybe u can ask your doctor and if anyone else has had it done Id like to hear, we are still waiting..it is expensive and not all insurance will pay for it..

  • Tamara Haag moderator author
    7 months ago

    That would be such a wonderful wish come true – thanks for sharing!

  • Tamara Haag moderator author
    7 months ago

    Wow, what timing! Fellow moderator Richard just shared this link on a Facebook conversation regarding the frustrating trial and error process: https://www.sciencedaily.com/releases/2018/03/180319124232.htm. It looks like this wish actually could conceivably come true! Fingers (gently) crossed!

  • Monica Y. Sengupta moderator
    7 months ago

    YES. YES. YES. I don’t want to even delve into the number of months I’ve wasted on unreliable biologics!

  • Tamara Haag moderator author
    7 months ago

    That’s a great wish, J0dspace! Thank you for sharing! I wish you all the best and hope you can get as close to seeing that wish come true as is possible. Gentle hugs, Tamara

  • Jo J
    7 months ago

    My wish is to walk with fluidity, the cherry on top would be for 3 miles!

  • Tich
    7 months ago

    Thanks for the article Tamara. I’ve spent a large amount of time dreaming for things that might help. One search that returned valuable info for me was for an alternative to the large amount of prednisone as a means to reduce my soaring inflammation. I found this treatment being used far and wide: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2477705/
    and have been self-treating with radon for nearly three years along with my conventional treatments… however without steroids.

  • Tamara Haag moderator author
    7 months ago

    Hi Tich,

    Thank you for sharing that link! I’ve never heard of radon treatment, so it’s interesting information. I’m so glad you found something that allows you to not need steroids. Thanks for sharing!

    All the best,
    Tamara

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