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I Wish You Could Live in My Body for a Day

I am lucky to have many supportive people in my life. In this online community, people have shared being left by their spouses, having friends end their friendships, and losing their jobs because of rheumatoid arthritis (RA). I know that I am fortunate not to have had those experiences. That being said, while I do have people in my life who are generally supportive, even they can’t always get what it’s like to live with such a painful disease as RA.

RA flares turn my world upside down

Most of the time, I can live life with RA in relative peace with the world. Yes, it’s a painful disease that interferes with my social life, work life, home life, and sex life. I do not pretend that it is easy to live with. Rather, after having lived with an RA diagnosis for 17 years, most days I view it as my “new normal.” I don’t like it, but I don’t spend most of my days mad at the world either.

However, when I am in a severe flare my perspective completely shifts. When each movement is painful, when the weight of a pound feels like it’s crushing me, when it’s impossible to achieve any comfort whether walking, standing, sitting, or lying down, it’s hard to just get through the day, much less to feel at peace.

Live my reality for a day

Friends and family still don’t “get it”

The people most central to my life, my husband and young children, many of my relatives, and my closest friends understand that I have a disease that sometimes renders me unable to do the things that I can normally do. Yet, aside from a few loved ones who are also living with painful chronic illnesses, even those in my inner circle still don’t fully “get it.”

What it’s like to be me

I wouldn’t wish this disease on anyone, but there are times when I wish that people could live my reality for a day. I’m confident that if they felt what it feels like to be me some days, they wouldn’t be put out when I can’t make it to a social gathering, or feel slighted when I don’t have the energy to give advice about an annoying situation they’re experiencing, or take it personally when I don’t laugh wholeheartedly at a joke, or be disappointed when I have to postpone a meeting or other obligation.

Understanding life with chronic pain

I feel that if people understood what severe chronic pain is like to live with, they would be amazed at the things I accomplish in spite of that pain. Rather than feel irritated that I can’t make it to a social event, they would understand how lonely and disappointing it is to be laid up at home when fun things are happening without me. Rather than feel slighted when I don’t participate as fully in conversation as I would on a good day, they would feel honored that I’m giving what little energy I have to listening to them. Rather than wonder why I’m not laughing out loud at their jokes, they would marvel that I’m able to attend to light-hearted subjects. Rather than be disappointed that I have to postpone a meeting, they would wonder how I can even think of the meeting while hurting as bad as I do.

Persevering through a flare

I know we can never truly know what another person’s reality is like, and wishing for that is pointless. However, fruitless as it may be, I still find myself wishing from time to time that certain people could live in my body for a day during a flare. If they did, they would not only realize how much determination, courage, and fortitude it takes to do all that I manage to do in spite of this awful disease, but they would be humbled at how important they are to me that I strive to do the most I can do for and with them given the constraints RA places on me.

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

  • tckrd
    3 weeks ago

    That was wonderful thank you for writing what I have been thinking. This needs to be published in every newspaper in the U.S.

  • Tamara Haag moderator author
    3 weeks ago

    Hi tckrd,

    Thanks so much for sharing your comment. I’m so glad that you found the article worthwhile.

    Wishing you all the best,
    Tamara

  • Kelly Dabel moderator
    3 weeks ago

    Thank you so much for taking the time to give us your feedback tckrd. So glad this was helpful to you. Best, Kelly, Rheumatoidarthritis.net Team member

  • B.Hughes
    4 weeks ago

    Your not alone in your thinking. It’s hard when your in so much pain that all you want to do is scream to the top of your lungs . I’m so irritable when I have a flare that all I want to do is crawl in bed and never get up but then i feel guilty for not doing more. I’ve always been a person who wants to take care of everyone else but I’ve had to learn to take care of me. I love my family and friends but I too feel at times like they just don’t get it. I’m so glad to have this group to be able to share with because I know you all understand.

  • Tamara Haag moderator author
    3 weeks ago

    Hi B. Hughes,

    Oh I know exactly what you mean! The guilt is real, but it is not helpful. I struggle to use positive self talk around my needs, because so often guilt seeps in like water in a leaky boat. In case you find you can relate here is an article I’ve written about that: https://rheumatoidarthritis.net/living/priority-number-one/

    Thank you so much for sharing, as it helps all of us to know we’re not alone. I do wish we could all get all the understanding and compassion we need from our friends and family, but that is rare, so I am glad to hear that this group brings you some measure of comfort.

    Wishing you all the best,
    Tamara

  • Kelly Dabel moderator
    4 weeks ago

    Thank you for sharing and being part of our community B.Hughes. I hope this was helpful and reminded you that you are not alone here. Wishing you relief ahead. Best, Kelly, Rheumatoidarthritis.net Team Member

  • kat-elton
    2 years ago

    Really well said Tamara! It’s hard for anyone to truly empathize unless they’ve walked a mile in your shoes so to speak.

  • Tamara Haag moderator author
    2 years ago

    Hi Kat-Elton, Thanks so much for your comment! Wishing you the best, Tamara

  • LinnieLoo
    2 years ago

    Being recently diagnosed (less than a year)with RA at 62, I was struggling with what I thought was osteoarthritis until my feet began to change. I felt so guilty for being unable to ‘pull my weight ‘ like I had always been proud of doing. My partner was getting frustrated with my inability to do the things we loved to do. My blood test were off the charts, making the diagnosis easy at that point.
    Neither my partner or I had any clue what RA was. We are slowly learning together as this disease progresses.Do I wish he could live with this one day to feel what it’s like? Sometimes! Like Nitrobunny said, I want to feel what ‘normal’ feels like. He is 69 and has issues of his own but makes himself do things regardless. He is compassionate but really does not understand why I have to shut down and really am unable to bull thru the pain sometimes.
    Sometimes I want my rheumatologist to feel it! I want to try something different but he says not to change because we are ‘improving’ and there is no need….after almost a year of this, I have an appointment with a new rheumatologist next month for a second opinion.

  • Tamara Haag moderator author
    2 years ago

    Hi LinnieLoo,

    Thanks for sharing your experience. I’m sorry for your relatively-recent diagnosis. This is a club of incredibly strong, amazing people that no one ever wants to join! 🙂 I’ve been diagnosed for 17 years, and I still struggle with how to make those closest to me understand, and it was all the harder in those first few years. I send you all the best as you continue to transition to this “new normal.”

    That’s a great point you make about wishing your rheumatologist could experience your reality for a day! I completely agree. I’ve had three rheumatologists. The first had a horrible bedside manner and didn’t pursue the most effective treatment. My second rheumatologist (I went to her for 10 years) had the best bedside manner in the world and was very informative and compassionate. However, in hindsight I realize that she took a “this is good enough” approach that I misunderstood as “this really is the best it’s going to get.” I switched to my current rheumatologist b/c he’s located in my town, versus 70 miles away, and I’d heard good things about him (and I hated my 2nd rheumatologist’s office staff and having to call 15 times to get through once). While his bedside manner is fine, he’s not the same as my last doctor. However, when it comes to treatment he never accepts a “this is good enough” perspective. His goal is to get me to medically-induced remission, or as close to that as possible. He tweaks my treatment plan frequently, always allowing enough time for the changes to have enough time but scrapping them if that time has elapsed and I’m not where WE want us to be. It’s such a different thing to have a doctor who wants me in remission nearly as badly as I want to be. So I commend you for searching for the right doctor whose approach fits with yours. It takes a lot of energy to find and try out a new doctor, but it can really pay off. Kudos to you!

    Please continue to reach out any time you have an experience or comment you’d like to share or if you ever have a question. Having RA is a hard road to walk, but you don’t have to walk it alone, as we are here for you.

    Wishing you all the best,
    Tamara

  • Nitrobunny
    2 years ago

    I cannot count the number of times I have told my husband “I wish I could trade bodies with your for a day”. Not that my husband is anything less than an amazing caregiver and has never once made me feel as if I was a burden to him, but I honestly want him to know what it feels like and the how the constant changes in my condition in addition to the never ending pain in different locations and varieties. I hate that 90% of what I have to talk about is a myriad of doctors appointment, tests, and treatment plans but what I am supposed to respond with when he constantly asks me how I am. I genuinely cringe when anyone asks that question. I’m tired of talking about it. The answer is never going to be “Hey I feel great!!!! Completely awesome. I woke up this morning and nothing hurt!!!” My situation is complex and difficult to manage. I have no less than six doctor’s appointments a month and labs at least once a week, usually two. I am very realistic about my condition and pain management. At the same time, I’m grateful for every day, every moment. As badly as I may feel, I am keenly aware there are many suffering far more than I am, in greater pain. I’m grateful for the team of health care providers that I’ve managed to assemble. There’s no doubt in my mind every one of them is doing their absolute best to help me live the best life possible.

    I push through the pain. I’ve become pretty good at it and sometimes even he forgets that I really am in pain. I want to make that switch for a day because I want to know what it feels like to be “normal”. I want to wake up, run five miles like I used to do every morning. Go to they gym and work out. Surf, ski and do all of the things I used to do before autoimmune diseases attacked and changed my life forever.

  • Tamara Haag moderator author
    2 years ago

    Hi Nitrobunny,

    Thank you so much for sharing this heartfelt account of your experience. It does sound like you have a lot to contend with, and I’m glad you have a supportive spouse (I am lucky in that regard as well), but I know that no one who isn’t contending with similar struggles can truly understand.

    Thank you for sharing a little glimpse into your daily experience, as well as your perspective about your disease, managing it, and life in general. It’s true that it’s awful to have this disease and to have to undergo so much treatment, and that it would be even worse if the treatment wasn’t accessible. I’m so glad you’ve found medical professionals you trust. That makes such a huge difference. I just wish they weren’t so necessary!

    I hope you continue to reach out and share any time you feel inclined.

    Gentle hugs,
    Tamara

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