What to Tell Others

What to Tell Others

I have a hard time talking about my pain and illness with others. It’s something I’m trying to get better at, especially with close friends.

Fundamentally, I struggle with the question: how much do I share? How much can others handle? How much do I give away? Will I be burdening people with the truth?

My husband is my confidante. From the moment we met, he was observant. He sometimes knows I am in pain or feeling poorly before I do. When Richard asks how I am feeling, I answer honestly.

Perhaps because we share our life, I do not feel I am burdening him. I also know he cares and will ask if there’s anything he can do to help me feel better, like get more medication. As much as I take care of him, he is taking care of me.

But what do I tell others? And how much do they really want to know?

For me, I have a small number of close friends with whom I will share health updates and how my RA is treating me. Partly, I think this is just part of my personality that I can share and be more open with a smaller group. Another piece is that I don’t want to overburden other people with worry about my condition when they cannot do anything to change it.

Spending time with friends and family can make me feel better. I usually prefer hearing about others and don’t want to talk too much about myself, especially if I am not feeling well. Enjoying the camaraderie and some laughs can lighten my mood and pain on a bad day.

However, some support and sympathy can also be really helpful. During a recent period when I wasn’t feeling well I had dinner with two close friends. Often, when I’m asked: how are you? I will say fine. But this time I found myself admitting that I felt awful and frustrated. My terrific friends were great listeners and sharing my troubles made me feel better.

In a different arena, I rarely ever share. As much as I like my coworkers, I don’t share how I am feeling unless I think it may be affecting my work. For me, work is an escape. I enjoy work because I spend the day focusing on producing and can get distracted from whatever joint pain is plaguing me that day. I honestly don’t want to talk much about my RA in the office.

There are days when I am flaring or exhausted and it’s like my RA is written across my face. On these days, I may mention that I’m not feeling my best. Still, I prefer to focus on the work and not bring my personal story to the office. I think part of it is also that I want other people not to start dwelling on my RA or feel sorry for me. I want to just be a co-worker, as much as possible.

It’s a tricky maze to figure out what we’re comfortable sharing about our illness, its progression, and the ongoing care of all RA’s pain and symptoms. For me, it does vary by the day and the situation. I’m constantly making calculations about how much I want to share with each individual.

I can’t say there are easy answers. Part of the challenge is thinking about how much I want other people to know about the effects of my RA. But the calculation also encompasses—how much do others want to know and hear? It’s a delicate balance of protecting myself and protecting others.

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 (17)
  • Mary Sophia Hawks moderator
    6 months ago

    Thank you for sharing, Kelly. I love the phrase, ” somedays it’s like RA is written on my face.” That describes me perfectly! I am not good at shielding my off days. However, I do try to minimize at work. I’m glad you have a great husband and good friends. I am a single (only) parent of 2 young men, with a small circle of friends, and a great big God.
    MS

  • Richard Faust moderator
    6 months ago

    Glad you found the information helpful MS. Know what you mean about trying to minimize the RA at work. Just today the Kelly is home with a terrible flair (her medication is failing and we are fighting to get the new one approved) and she asked me if it was saying too much to write a co-worker that she was feeling really bad today. I noticed you mentioned having two sons and thought you might like this article from one of our other contributors on RA lessons she hopes her children learn – compassion, kindness, patience, etc…: https://rheumatoidarthritis.net/living/lessons-hope-to-teach-children/. Know your children learn these things from you. Best, Richard (RheumatoidArthritis.net Team)

  • Kelly Mack moderator author
    6 months ago

    Hello, hang in there! Glad I could be helpful! I think a small and strong circle of support is the best kind. Hope that you also find support among our community here. 🙂 Best, Kelly (RheumatoidArthritis.net Team)

  • tckrd
    6 months ago

    Be glad you can share with your spouse. Mine does not understand she says she doesn’t feel the same because of how two diseases have changed me.

  • Kelly Mack moderator author
    6 months ago

    Thanks tckrd. I’m very appreciative that my spouse listens to me about my RA symptoms. He also can see things that I can’t. Sometimes he knows I am not feeling good before I realize it. Hope that you find people, like this community, that you can share with and find support. We try to be there for each other during the RA struggle. Best, Kelly (RheumatoidArthritis.net Team)

  • AuntiePolgara
    1 year ago

    I usually make a joke about it, especially if I am using my walker and say with a smile on my face: “Not dead yet, how about you??” That tends to lighten the mood.

  • CynthiaFarthing-Sayre
    1 year ago

    Coming to this party late..:) I feel I owe society in general a complete understanding of RD/RA for how else will we bring understanding to the fact that it is NOT “just arthritis.” The wider we broadcast the issues, the greater the understanding not only in our community but pharmaceuticals, developmental elements etc. If our speaking out is offensive to friends and family, then apologize and move on, otherwise, sharing is learning.

  • Richard Faust moderator
    1 year ago

    Thanks for writing Cynthia. Educating others is certainly important. I can say from personal experience that the author is very interested and involved with advocacy (I happen to be her husband). She has been in a wheelchair much of her life and thus her RA is very visible. In this article writes about “How to Stick Out:” https://rheumatoidarthritis.net/living/stick/. She notes “While I’ll always stick out, I can use the power for good. I don’t let my difference keep me locked in others expectations or preconceptions. I work to educate others about rheumatoid arthritis and making room for people with disabilities in our community…”

    Thought you might also be interested in this article from one of our other contributors on the benefits of advocacy: https://rheumatoidarthritis.net/living/the-benefits-of-advocacy/. Thanks for being part of the community. Best, Richard (RheumatoidArthritis.net Team)

  • RAWarrior
    3 years ago

    “Will I be burdening people with the truth?”

    Not something I have EVER worried about in my life about anything!

    I share what I want to share about any aspect of my life – health or otherwise!

    If other can’t handle it, they’ll let you know by their attitude, behavior or response. If they indicate they can’t handle it or don’t want to handle it…they are not my friend!

  • Kelly Mack moderator author
    2 years ago

    Good point and really like your perspective! Thanks for sharing! Best, Kelly

  • Cathy at arthritiswisdom.com
    3 years ago

    Thank you Kelly. I’ve put a lot of thought into who needs to know what about my RA and have concluded it is on a need to know basis. Awkward and uncomfortable describe most interactions that brought me to the decision!

  • Kelly Mack moderator author
    2 years ago

    Hi Cathy, that totally makes sense and I think that’s largely how I approach things as well. Sometimes we just have to take care of ourselves! Best, Kelly

  • Cloudy
    3 years ago

    I’m struggling with this question because I have recently reduced my work hours as a result of my RA – I just can’t cope with a full load now. Of course this means that I have reduced my income too, and that brings its own struggles. So when my co-workers say, as they tend to do, “Oh aren’t you lucky to be able to work part-time, I wish I could!” I just cannot bring myself to smile and agree. Instead I find myself trying to explain that it is something I have had to do because I’m in pain – and I run smack up against the fact that my pain is invisible.
    I feel as though I have the choice of being seen as a whinger or a slacker. How do you cope with this?

  • Kelly Mack moderator author
    2 years ago

    I agree with Cathy, but would also add that the focus is about taking care of yourself and your health. It’s too bad that people misunderstand, but it is more important that you do what you need to support your health. Best, Kelly

  • Cathy at arthritiswisdom.com
    3 years ago

    It is a struggle! I’ve had to reduce my availability at work due to my RA. I am at peace concerning this because I know my health would suffer if I continued my previous schedule. I hope you have an inner circle of friends and family that do understand to draw strength from. Focus on them! All the best to you!

  • jan curtice
    3 years ago

    Hi Kelly, I enjoyed your posting. This is something I struggle with at times, too. The question “how are you doing?” in our culture is often just part of a polite conversation. So, when my filter is on, I am better able to screen for that. When my pain levels are high, the fog that goes with it muddles the filter and I have to be careful about answering that question. Having decided ahead of time what and who I share with …. like you have outlined in your posting … helps me to not overshare. The other part I’ve found is that unless someone is educated/informed about RA, what I tell them doesn’t make sense. Then I become frustrated not only trying to explain how I feel but also about RA. I usually give a simple truthful answer such as “my body and I aren’t on speaking terms today”, then allow the other person to ask questions if they want more information. Something else I’ve found is that most people don’t really want to know the details … for someone who is healthy, our situation is hopeless and painful. That reality is hard to accept and they haven’t developed any coping strategies for how to talk to/support someone in this situation. So, that circles back to the “protecting others” you mentioned. One of the reasons I enjoy this site is I can share and others “get it”.

  • Kelly Mack moderator author
    2 years ago

    Really glad you find RA.net to be a supportive community! It can be really helpful to share with others who understand. 🙂 Best, Kelly

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