RA: The Trouble With Talking About It

RA: The Trouble With Talking About It

Over the course of my life I’ve had a lot of aha moments come from the most unexpected places. Recently, I was watching the show, “Chasing Life,” about a young woman who finds out she has cancer. She was struggling to figure out how to tell her friends and loved ones, discovering as she told people that she had to handle their reactions and was worried about how her relationships would change. All of this is very familiar territory for me, as I’m guessing it is for most people living with chronic diseases like rheumatoid arthritis. The minute someone learns I have juvenile rheumatoid arthritis the dynamic shifts. Often I will hear advice about how to treat it, or stories about other people with the disease, or I’ll hear about how my companion has it too and how bad it is for them (always when they are mistaking osteoarthritis for RA.) Almost everyone will tell me how sorry they are. It’s always a bit uncomfortable which is why in the past I avoided the conversation as much as I could. But eventually, anyone who becomes close to me has to know, and avoidance is never a good strategy when it comes to living well with rheumatoid arthritis.

When RA ceases to be invisible

These days the conversation happens pretty quickly because my JRA is no longer that invisible. After the first reaction occurs I try to steer the conversation towards the positive because I don’t want to seem like a victim or someone who needs sympathy. The hardest part for me when talking about my JRA is the fear of how the other person will handle the information. It’s hard to appear like a strong, vibrant person under the spectre of a chronic, painful disease, especially when you are being treated with pity or infantilized. Yet these are the most common reactions I’ve dealt with over the years, and I have yet to come up with a sure-fire way to ward these reactions off.

People living with RA are resilient

The irony is that people who live well with RA are some of the strongest people on the planet and we are so often treated like children who don’t know how to feed ourselves or how much rest we need. The infantilization that unexpectedly comes with a diagnosis of RA is hard to completely ward off for me because I’m always trying to learn more about the disease so that hopefully one day I’ll achieve remission. So when someone starts to tell me about how their cousin switched to a paleo diet and his symptoms abated I’m going to listen and ask questions. The problem with this is it makes me appear as if I don’t know as much as the other person who now feels as if they should constantly give me unsolicited advice. I’ve even had a well-meaning friend tell me that my lifestyle causes my JRA and if I would only eat a raw food diet I would be cured. This happened when she bumped into me at the grocery store and saw what was in my cart, which, for the record, was filled with anti-inflammatory foods. On days that I’m feeling good about how I’m doing physically I can handle these kinds of interactions with aplomb but when I’m feeling vulnerable this kind of advice always makes me question myself, anxious that I am doing something wrong. This then ends up putting me into a vicious cycle of vulnerability—unsolicited opinions from others—anxiety—more input from others—resentment on my part—pity or frustration of others—vulnerability. The only way out of this for me is to distance myself from the other person until I feel my composure and self-confidence coming back.

I doubt that my experience is unusual. Often, I either feel like a martyr or a pitiful creature that needs to be taken care of, and of course I am neither of those things. I don’t want to be told what a poor thing I am any more than I want to be told how strong I am. I just want to be me, someone who lives with pain as best as I can, someone who tries hard every day but some days doesn’t have the energy to do much but handle it in the moment. I often wonder if it is possible to talk about chronic disease with someone who doesn’t have it without being infantilized or pitied.

Communicating with others about RA

Reacting to other people’s reactions when you tell them about your RA in a way that doesn’t make either one of you feel worse is a skill that I’m still learning. I’m also learning how to talk about life with JRA in a way that doesn’t invite advice or direction. But one thing I have learned well is who to surround myself with on a daily basis.

And that is where my aha moment comes in.

April, the young woman in the show, was talking to a friend who had been living with cancer for awhile, and he offered her some advice. “Surround yourself with people who can handle it,” he said. I stopped the show and wrote down his words.

Surround yourself with people who can handle it.

Those words made me really think about the people I’ve surrounded myself with over the years, and I realized something. The hardest times in my life have always been when I was feeling alone- and I don’t mean I was alone during those times. The loneliest feeling comes when you are surrounded by people and still you feel completely alone. Right now, I’m happy to report that I’m anything but alone. I’m married to a man who also lives with chronic pain, and my close friends are happy to let me be the driver of my own life; they know me well enough to know that I’ll ask for advice if I need it, but most of the time I do just fine on my own. I know that they can handle it because I feel comfortable saying that I’m having a bad day confident that the response will be concern, not pity. I know that they can handle it because I still get invited to activities and if I have to cancel at the last minute, there is disappointment but no drama. And most of all I know that they can handle it because when I’m with them, the JRA comes along for the ride, and sometimes it means I have to make adjustments in how and when I do things, but it’s no big deal, adjustments are made and off we go. Just the way I like it, and that sure feels good.

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 (12)
  • swbw
    1 year ago

    I can identify with everything you have said! For me, the hardest part is being inconsistent and having to apologize for not being able to go out or participate at the last minute. This keeps me from saying “yes” to most invitations…after awhile people quit inviting. The real let down is when I am unable to attend or help with things that involve my granddaughters. I have 4 of them, ages 10, 7, 4, and 1. They are doing better at understanding when Grandma has to stop, but sometimes there are tears from them and from me as well. It is hard not to be the grandmother I always dreamed of being…but, their are lots of “little” things we can do together and for that I am very grateful.

  • kat-elton author
    1 year ago

    I agree- the hardest part for me is letting down loved ones, especially my nieces and nephews. I always wish I could be at every family gathering but especially since I live in a different state and have to fly back to be with them it gets hard. But the lack of ability to truly commit to plans until the day of is really hard too. Glad you have found some things you can enjoy with your grandkids!

  • Mary Mann
    1 year ago

    Kat
    Congratulations for managing your JRA for so long. Fielding the responses of others to your situation is tough. People are well meaning, but sometimes not helpful. I have had RA for four years. Although I have tried most of the biologics, I have not had much luck.

    I am older than you so I don’t allow the opinions of others sidetrack me as much. Whether you have an illness or not, people are always going to want you to try their diet. Human Nature. Your choice to surround yourself with good people is a good one. Best of luck.

  • kat-elton author
    1 year ago

    Great attitude Mary! And really good point. I just had a conversation with a friend who doesn’t have RA and she said the same thing. I hope your RA is in control even though biologics haven’t helped. I’ve had a mixed response as well and know how much perseverance it can take to find a good medical regime that works for your life and your body.

  • jillkcrawford
    1 year ago

    Thank you. I felt like I had written this. I had my ra for the first 20 years when I was a kid and young adult. The last 10 years I’ve been more open and it is challenging but better.

  • kat-elton author
    1 year ago

    I know Jill- it’s hard to get there but once you can be more open with people it is a huge relief and for me it always makes me feel strong to just get it out there with people. 🙂

  • jan curtice
    1 year ago

    Well-said, Kat! And a very touchy conversation … especially when it comes to family. I like to surround myself with people I feel SAFE being my real self with. Safe to talk, safe to be quiet, safe to know they aren’t going to try to do my medical team’s job or mine, safe to ask for help, safe to relax and not have to worry about what is happening on their end, etc. Guess that’s the same as the people who can handle it. =^^=

  • kat-elton author
    1 year ago

    You got it Jan! Sounds like you have some good people in your life 🙂

  • kat-elton author
    1 year ago

    Exactly! It’s amazing how different you feel when you are surrounded by people who are safe to be yourself with. ❤️

  • Richard Faust moderator
    1 year ago

    Hi Jan. Those with RA certainly have enough to worry about without having to worry about what other people are thinking or their opinions on how you should be handling your condition or, frankly, anything in your life. In this article one of our contributors tries to find a method for dealing with the repeated conversations/unsolicited advice: https://rheumatoidarthritis.net/living/like-a-broken-record/. Wishing you many safe days. Richard (RheumatoidArthritis.net Team)

  • Lawrence 'rick' Phillips
    1 year ago

    I do not know if it is more traumatic to have RA invisible or visible. I have had it both ways and it seems about six one, half dozen another. I think in the last 20 years I have seen how difficult it is to use a wheelchair, and I have walked into stores without skipping a beat.

    I think overall no matter how I look, I have to say it is how good or bad I feel that might make the difference. I hope you are feeling well.

  • Richard Faust moderator
    1 year ago

    Hi Rick. It is an interesting question about how the extent of one’s condition visibility effects how people react. I don’t know if you have seen this article from my wife, Kelly Mack, on being the very visible person: https://rheumatoidarthritis.net/living/stick/. She notes that “I feel for my friends with RA who struggle with an invisible illness that they have to explain to others, who are often not understanding and supportive. While there are things I don’t like about always being visible, at least I don’t have to defend myself and explain that I have pain and a condition that can make life challenging. It is obvious!”

    Of course, you also mention how you feel potentially making the real difference and that is a whole other issue. Kelly was just commenting to me about brain fog and whether to ever mention it. It can’t be seen and it effects not just how one feels, but how one even processes information. Throw other people and their reactions into that mix and … Certainly a difficult question for the individual to deal with. Best, Richard (RheumatoidArthritis.net Team)

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