RA Daydreams: I-Know-RA Spray

RA Daydreams: I-Know-RA Spray

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

Living with rheumatoid arthritis (RA) is challenging, to say the least. Swelling and stiffness can make it hard just to get out of bed. Pain can cause even minor movements to be excruciating. Fatigue can feel like a firm hand holding one down in place. This would all be hard enough to contend with in the context of empathy. However, most people have no idea that RA is a degenerative autoimmune disease without a cure. Therefore, many of us with the condition often feel we are suffering alone.

Sometimes people in our lives need help understanding RA

When our spouses, relatives, friends, co-workers, and bosses don’t understand what it’s like to live with an unpredictable chronic condition like RA, it would be a game-changer to have a way to insert that understanding into their brains. What if there was an I-Know-RA Spray that we could spritz them with, and they would instantly understand what we’re going through?

For instance, a concerned colleague asks why I’m wearing a wrist splint. When I tell her that I have rheumatoid arthritis, she says, “Oh I have arthritis in my elbow from tennis.” I dispense a quick spritz of I-Know-RA Spray. Suddenly, her response changes to, “I can’t imagine what it’s like to live with that condition. I know what the pain of tennis elbow is like, and it must be awful to have that kind of pain throughout your entire body.”

At the grocery store I run into an acquaintance who notices I’m limping while pushing my cart. When I tell him it’s because I have rheumatoid arthritis, he replies, “But you’re too young to have arthritis!” A quick spray of I-Know-RA, and instantly he changes his response to, “It must be hard to have an autoimmune disease to contend with so early in life. I wish young people could be spared from chronic conditions.”

When a relative asks how I’m doing and I share that I’m having a difficult time due to a flare, she says, “Well look on the bright side, at least it’s not cancer.” Spritz! Thanks to I-Know-RA Spray, her response becomes, “I hate that you have to deal with this, and I hope this flare passes soon. Is there anything I can do?”

While picking up my kids from school, another mom asks how I’m doing. When I decide to be honest and tell her that I’m actually having a tough day due to RA symptoms, she asks, “Have you tried ibuprofen?” With a misting of I-Know-RA Spray, she replies, “How frustrating that with all the medications you’re on, from anti-inflammatories to prescription Lidocaine patches to DMARDs to a monthly biologic infusion to over-the-counter and prescription painkillers and muscle relaxers, RA is still so stubborn. What a tough disease!”

When talking to a friend about RA, he tells me that his sister’s friend’s neighbor just cured her rheumatoid arthritis with a supplement, and that I should try it. Spritz! Instantly, he says, “I’ve heard about a supplement that helped someone’s RA, so I want to tell you about it because I would love to find something that would take away your pain. However, I know that a cure for RA has not been found, and that everyone with the disease responds differently to the drugs, diets, and alternative treatments used to decrease symptoms. If it’s okay with you, I’ll share what I heard about this supplement, taking it with a grain of salt since your response to it may not be the same.”

After barely making it through a long workday, I apologize to my friend that I can’t make it to her party because my RA symptoms have ramped up. She says, “But I invited you weeks ago and you said you would come!” With a spray of I-Know-RA, she changes her response to, “Man, that stinks. I’m really disappointed that I won’t get to see you, but I’m even more bummed that you aren’t feeling well. I hope you feel much better soon, and that getting some rest tonight helps.”

While those of us living with rheumatoid arthritis know that we must soldier on with this disease alone, and can’t reasonably expect others to understand what we’re going through, there are many times when I wish I had a can of I-Know-RA Spray on hand. It’s easy for others to misinterpret our actions as whiny, lazy, or overly dramatic. However, if we could instantly make them understand what it is like to live with RA, they would not only realize that we are truly doing the best that we can, but would also see how tenacious, determined, strong, and brave we really are.

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 (19)
  • CynthiaV
    8 months ago

    Oh Tamara your article is priceless! You made me laugh, cry and long for such a spray. Thank you for your gift of explaining fellow RA sufferer’s struggles and the responses we long to hear. You are truly gifted and all who read your articles are blessed.

    It took years for my husband to truly begin to understand my daily RA journey. It helped when I invited him to tag along with me to my appointment. My rheumy is a wonderful, caring and empathetic doctor. Hearing from him the struggles I faced despite the treatments I undergo and the countless medications I am prescribed opened up a whole different understanding for him. It did not happen overnight but it is as if he rcvd a good misting of your spray and it helped him understand my life post-RA.

    For years and unfortunately to this day his family treats me as if I am, “lazy, whiney and overdramatic.” But thankfully my husband now has a better grasp of the realities of this incurable disease. Do I still feel alone? I do but it is not bc my husband doesn’t get it, he does. It is just the incessant nature of the disease that many times leaves us in a bad place. But I know I have the person in my world who means the most to me in my corner now and that’s hard to beat.

    Thank you for sharing this article with me. Be well and prayers for good days ahead.

  • Tamara Haag moderator author
    8 months ago

    Thank you so much for sharing these beautiful compliments as well as the journey you’ve gone through with your husband, CynthiaV! I’m sorry to hear that his family doesn’t understand what you’re going through, but I’m glad that your husband has gained some understanding. He’s the one who matters most, so his support counts for a lot (although I myself still worry every time I can’t make a family function or my in-laws come by when the house is a mess, so I completely understand the pressures that familial expectations bring). While his family may not understand how much determination and grit ou have to live each day with this disease, those of us here in this community do. In case it’s helpful, here’s an article about the multiple perspectives we can have about living each day with RA: https://rheumatoidarthritis.net/living/is-this-courage/. No pressure to read it, but I’m sharing in case it helps.
    Thank you for sharing with our community. There are so many people feeling alone with this disease, and when people like you share what you’re going through it helps us all know we’re not alone.
    Sending gentle hugs and hopes for some in-law enlightenment,
    Tamara

  • scarlett06
    8 months ago

    I was very touched when my sister said she was getting the emails from RA.net. I was surprised, when I asked her why, she said “Because you have it”. That made me feel so much better. I felt like I had to keep it to myself most of my life (since 18 yrs old) because I just knew no one would understand. And, the odd time, when asked about something, and I did decide to say that I had RA, I did get similar responses. Yes, I’ve had arthritis in my knee for a while now. Or the one that I always hate “Yeah, it sucks getting old”!! Um, I’ve had this since I was 18!!! So, I’ve just gone back to not saying much to very many people. Sometimes you know when you’ve met someone that will understand, and I will (might) say something. But, I always feel like the less said, the better, or you do become a whiner. If you say it, when asked, and they don’t get it, then no point in saying anymore. Thank you for your article! I did like it! And, wishing you the best! 🙂

  • Tamara Haag moderator author
    8 months ago

    Thanks for sharing your experiences and your kind words, Scarlett06! I’m so glad that your sister does want to understand the condition and what you are going through. I have certainly had similar experiences as you have had. I was diagnosed at 22 after years of misdiagnosed symptoms. While it’s true that most don’t get it, at this point in my life I often casually mention that I have RA when someone asks how I’m doing or why I’m wearing a splint or why I was absent, etc. I don’t get into details unless they are interested, but I mention it so that people will get a chance to understand that chronic illness impacts people they might not expect. That being said, I still wish for I-Know-RA-Spray!!! Over the years I have gotten more unhelpful comments than helpful ones, but every once in a while someone will surprise me (much like your sister surprised you). In case you’re interested, I also wrote an article about the helpful things people can say: https://rheumatoidarthritis.net/living/the-right-things-to-say-to-someone/.

    Wishing you all the best,
    Tamara

  • Monica Y. Sengupta moderator
    8 months ago

    Glad you enjoyed the article, scarlett06! I completely agree with everything you’ve said. I was diagnosed at 20 and at first I was pretty open about it. I learned the hard way (through these same responses) that it’s just better to keep my mouth shut sometimes! Thanks so much for sharing!! ~Monica (RheumatoidArthritis.net Team)

  • Tamara Haag moderator author
    1 year ago

    Hi Linda,

    Thank you so much for sharing all of those suggestions and your own personal experience. It is very helpful and validating. Thank you for being in our online community and sharing this helpful information! All the best, Tamara

  • Karen
    1 year ago

    I LOVE how you have taken such a light response on such a damn heavy topic. I know I’d purchase, I-Know-RA Spray, buy the case and spritz it on people that do not even interact with me!!! I’ve had this God awful disease for 20 years now and my closest friends and relatives STILL do not get it!!!! Your article made me smile!! Thank you!

  • Tamara Haag moderator author
    1 year ago

    Hi Karen, Thank you for sharing your thoughts and kind comments! It always makes my day to hear that I’ve been the source of a smile. Thanks for sharing your experience, as I think many of us can relate. I wish none of us had to live with this disease, but since we do at least we’re let each other known we’re not alone in our struggles. Sending you gentle hugs!

  • Sampia
    1 year ago

    I wish I could wake up my sister. I have tried but she just refuses to understand. She told me she’s not inviting me to her house anymore because I declined twice in a row. Why should I have to convince her that it’s not personal?

  • Tamara Haag moderator author
    1 year ago

    Hi Kammies, I’m so sorry your sister doesn’t understand how big an impact RA has on your life and that one of the many awful aspects of this disease is that it often renders us unable to do the things we wish we were doing. Here’s another article I wrote solely about this aspect of RA: https://rheumatoidarthritis.net/living/pencil-me-in/. Maybe your sister might be willing to read it and hopefully realize it’s nothing personal when RA makes it too hard for you to visit her.

    Thank you for sharing this struggle. I think a lot of us can relate! I wish you all the best.

  • Mantha
    1 year ago

    I love this. You are correct. Most people do not understand.

  • Tamara Haag moderator author
    1 year ago

    Thanks, Mantha! Of course I wish no one could relate to this, but as so many of us do, I’m glad you found it helpful. Wishing you all the best!

  • Tamara Haag moderator author
    1 year ago

    Thanks for your comments, Radiogirl! While many of us try to be brave in the face of this disease, I doubt that anyone is able to maintain that perspective every moment of every day. You may find this article about my reflections on what courage looks like day to day to be of interest: https://rheumatoidarthritis.net/living/is-this-courage/.

    Being newly diagnosed can be a uniquely difficult time. While most of us who have lived with this disease for years do continue to have fear about what the future will bring, that is typically even more so the case for those trying to process this new reality for the first time. Even though I was diagnosed 17 years ago, I vividly remember the mixture of fear, confusion and anxiety I felt when I learned I had an autoimmune disease.

    The good news is that there continue to be more and more treatments developed, and there are online resources such as this site to help you find answers to the questions you may have. There’s never a good time to be diagnosed with RA, but there are more resources available in 2017 than ever before. Of course the resource I keep hoping for is the ultimate one . . . a cure!

    Please continue to reach out any time you have a question, experience, or perspective you’d like to share. Thanks for being a part of our online community.

    Wishing you the very best,
    Tamara

  • Anke Schliessmann
    1 year ago

    Tamara, I like your humour and your brilliant ideas that always brings some light into our sometimes dark thoughts. I would also need your brilliant I-know-RA spray on those who frequently ask me in the office, will you go on business travel? And that just because they see me with my laptop trolley, since I cannot carry the laptop and all the accessories in a backpack as they do. I use that trolley now for about 5 (!) years every day when I’m in the office. Or, when I wear my “magic” RA compression gloves against pain and swelling in my hands in winter and summer time. Ah, do you think it’s going to be cold today? Meanwhile I answer those questions with a smile, since the answer no one really wants to her, but a little I-know-RA spray would really do the magic.
    Thank you for your post – I’m still smiling 🙂

  • Tamara Haag moderator author
    1 year ago

    Hi Anke,

    Thanks so much for this message! I hate to hear about the ongoing need to explain your everyday aides (I bet you sometimes feel like one of those toys where you pull the string and it says the same thing over and over), but I appreciate you sharing your experience, as I’m sure I’m not the only one nodding my head with the familiarity of it. I wish that wasn’t your reality, but it makes my day to hear I’ve given you reason to smile. Thank you for sharing!

    Gentle Hugs,
    Tamara

  • sharoncookie57
    1 year ago

    Sometimes dying sound like it would help.

  • Linda
    1 year ago

    I’m so sorry Sharon, that you’re having such a hard time right now. We all have our dark days and I truly understand where you’re coming from.

    I sometimes can help myself with the following: music, stand up comedy, creation (I have coloring books!), movies, dumb YouTube videos, my Hot tub, calls to friends and family, my furry little dog. And cat. And the other dog… Whatever I can do to snap myself out of it.

    I do take an antidepressant and it helps. If nothing helps for you please get some help, someone to talk to, to give you ideas. I am learning to meditate, and while it doesn’t magically take the pain it does calm me and relax me, and my muscles don’t hurt so much if they’re not tensed up.

    And sometimes I just have a good cry, get out the ice cream and the disaster files (my pile of Rom Coms) and lay around like a slob eating chocolate all day in a ridiculously oversized deep plush purple robe. And Chewbacca slippers.

    Coping strategies. I have a bunch. But I’ve also called that 1-800 number and you know what? I’m glad I did. Cause they helped me and I’m still here.

    So you hold on and do whatever you need to do. Be strong.

  • Tamara Haag moderator author
    1 year ago

    Hi Sharoncookie,

    I’m sure many of us have had days where we feel like that. It’s so hard over the internet to tell from someone’s tone whether they are completely serious or not. If you’re not being completely serious, then the rest of my reply will feel like overkill. However, just in case you are completely serious, I want to say that there is help out there for dealing with the strong, negative emotions that the pain and suffering associated with RA can spur.

    I have seen a therapist off and on throughout the 20+ years of my RA symptoms in an effort to address RA-related depression when it occurs. I’ve also gone to a support group. These supportive services have helped me through the hardest times.

    If you are interested in finding mental health support, you can visit https://findtreatment.samhsa.gov/ to find mental health services in your area. If you are interested in finding a support group, you can ask your doctor or call the Arthritis Foundation at 1-800-283-7800.

    If you ever get to a place where you seriously are contemplating suicide, there are resources available to help. The National Suicide Prevention Hotline is available 24 hours a day, 7 days a week at 1-800-273-8255. The organization also has a live chat option that you can access by visiting http://www.suicidepreventionlifeline.org/ Should you ever feel desperate, I urge you to use this resource.

    Again, if your comment was venting the frustration of living with this challenging disease, then this may be more info. than you need right now. However, I really care about this community and don’t want to assume that someone isn’t being serious if indeed they are.

    We understand how hard this disease is to live with, so please reach out anytime you need to communicate with a group that truly understands that.

    Sending you wishes for better days,
    Tamara

  • radiogirl
    1 year ago

    That’s strong reply, Sharoncookie, but one that has run through my mind quite often. I don’t feel as strong and heroic as so many here on the forum seem to be doing, dealing with their RA for often decades.

    I do know the only way to eat an elephant is one bite at a time, so I know I need to take it one day at a time. I am newly diagnosed so I am also on the low end of the learning curve, too.

    I am thankful for this site. I could never just quit and bail out, but I sure do understand your sentiments. Hang in there. We’ll all get through this as best we can TOGETHER! 🙂

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