Skip to Accessibility Tools Skip to Content Skip to Footer
Community Thoughts: How Much Do I Share About RA?

Community Thoughts: How Much Do I Share About RA?

Inspired by writer Kelly Mack‘s questions in a recent article: “I struggle with the question: how much do I share about my RA? How much can others handle? How much do I give away? Will I be burdening people with the truth?” we decided to pose these questions to our Facebook community. Check out what they had to say, and please share your thoughts in the comments!

I don’t think about it much:

  • I don’t dwell on the when and how to tell people, I’m too busy wanting to live a good life.

I tell no one:

  • I have no one at home to share it with.
  • People don’t care!
  • I learnt a long time ago, people don’t really want to know, everyone has their own personal stuff to deal with and don’t need my struggle on top of theirs. Also I don’t want RA to be “who I am” – I’m more than this disease.
  • I get: “Oh that, everyone has that.” Now I don’t share my pain with anyone.
  • Why waste time/energy explaining pain to people?
  • It has been such a constant issue, I’ve felt like it’s better to not say much. Hate to wear down those around you as well. As much as I may want to “share”, I also find it good to try to forget about it for a minute.
  • I deal with it quietly and no one knows I’m hurting. That way I don’t have to feel bad when I get the negative or ignorant comments. I can also do without the people who have the look on their face like they’re sorry they asked.

I walk a fine line…

  • It’s quite the fine line we walk between divulging all and not sharing truly how bad it is.
  • I’m never not honest on how I am, but I do omit things from time to time. I often struggle with: is it for their benefit or is it really self preservation?? It’s scary to try and explain how horrible this disease is when there are so many uncertainties and questions about it.
  • When I talk about it I start to cry. It is so overwhelming for me.
  • I am conflicted. At first I use to talk about my disease because people seemed interested but that interest wore off. I think people get sick of hearing about your disease just as much as I get sick of having it. Unlike cancer (which gets lots of positive attention), chronic illnesses lose their “sexiness” after awhile.
  • I wish there was a way to spread awareness without wearing people out.
  • I’ve lost friendships from sharing how I feel with some friends I thought were good friends.
  • I always seem to say I’m fine rather then mention a particular problem for today and have to explain it to dear people who cannot really understand, no matter how much they care.
  • Really depends on my mood at the time because people who don’t have it… don’t want to wrap their brains around it!!!
  • You have to have it to understand it and if you don’t have it, no need to share!!
  • For me it is embarrassing. I joke, laugh and make others laugh when I am asked how I am: “I don’t kick as high anymore.” Laughter is good medicine.
  • Share a little bit then check for reaction… depending on how that goes share some more… check again… stop if/when it gets uncomfortable.
  • Only answer when good questions are asked and then answer as simple and truthful as possible. Stupid questions or suggestions are ignored… guess why? Sorry I don’t hear so good. RA tends to do that as well 🙂
  • I’ve learnt who wants to be told “I’m fine,” and who wants an honest reply.
  • I’m a nurse and even in healthcare I’m amazed at how little people understand. That keeps me from sharing.
  • The times I regret talking about it is to my family and my friends. They all have so many natural remedies, plants and tonics. Now I have a garden full of them.

I’m selective about who I tell:

  • Being quite private, those extremely close know. I prefer to listen to others and help others – it’s the best medicine. For me, this yoke is one I need only share with few.
  • I don’t share much with many because I’m always thinking of others first and as [Kelly] said, I don’t want to make anyone uncomfortable, burdened or have pity on me.
  • My friends still don’t believe me when I tell them I’m having one of those bad arthritis days, so I’ve given up on trying to explain my situation. I love this page – I enjoy being able to share with people who know what I am going through and understand the impact.
  • I’m very blessed to have a husband who understands. I share with him but it still feels strange saying I’m in pain or feeling fatigued. I feel like I’m burdening him.
  • I find people who talk about their ill-health all the time to be extremely boring. For that reason, I keep my illnesses to myself.
  • Last week, one of my neighbors asked how I was. I said “I’m ok,” and he said “OK for real, or OK because that’s what people expect to hear?” I almost cried. Someone gets it. Makes up for all the rest.
  • I have a friend I confide in, but ONLY because she is a sufferer of lupus and understands.
  • I rarely talk about it at work unless someone asks, and then I still keep it simple.
  • I finally am aware that most people truly don’t understand, how could they? It took me awhile to “get it” myself.
  • My family/friends know of the condition, but most assume that medications are taking care of it all… LOL!! I gave up explaining.
  • I think it’s just too much to dump on an unsuspecting person. Plus, I find it quite depressing to go all in and tell someone everything. Trusting someone with this VERY personal part of me just isn’t something I’m comfortable doing. My husband is the only person I trust with this information. Even he doesn’t know everything. I don’t want him to worry.
  • For me, talking too much about it feels like I’m whining or complaining.
  • I have a very curled up hand from RA. Funny how many people don’t notice, but I don’t really stick it out there either. I like to do all I can myself and when I need help I’ll ask. When I’m having a painful day I give myself a break. I have learned for myself that complaining doesn’t make me feel better.
  • I have one coworker that genuinely asks and understands because she has a similar auto-immune disorder. Grateful for her friendship. It helps to have just one person who gets it.

I share freely!

  • They may not get it but I share how RA effects me because I want people to know why I might be crabby, cancel plans, not make plans at all or why I’m exhausted most of the time.
  • Unless we make people aware of what we go through, no one will understand how serious of a disease RA is.
  • I have become a voice for myself and many family and friends in the fact that I do talk about my pain, only because I am asked often: What’s wrong? How come you use a cane? Why did you cut your hair so short?, But it’s only arthritis, right??? I started talking to try to educate people.
  • I have been thanked for speaking out because friends have RA/RD and feel helpless when they try to explain. Posting an update on my current active RD helps me for two reasons: one, my support group has grown since I started posting which is a blessing, and two, because I can share once for all to read on my FB page. I actually do less explaining or repeating pains or symptoms. And, mostly because of this, more friends and family have spoken up for themselves. I have become my own champion for the cause.
  • I share my experiences. I hope I can help those with this disease which I had since childhood.
  • I tell everyone, I am a very open person. Because of my openness 3 people have discovered right away that they have RA. They have gone to their doctors and told them to check for RA.
  • Say what you need to say, don’t suffer in silence. Just let it out honey!

How do you feel about this issue? Please share your experiences in the comments!

Comments

  • zena
    2 years ago

    Hi I’m the sort of person that says the famous I’m fine answer when inside I could cry as it’s hard to explain the pain and low feeling although my family are good they don’t quite get it I’ve met someone recently who I’ve told certain bits to like cancelling going out being moody etc he is still here lol but I’m scared to explain the extent as he may run not sure if letting him see a bad episode is the answer instead of hiding away through one any advice would be helpful x

  • Cynthia Ventura moderator
    2 years ago

    The only one who kind of gets it is my husband but even his, “knowing” can only go so far. I dont expect him or anyone who doesn’t struggle day-to-day with RA to truly understand. But I do expect ppl to respect my story and my life as I do theirs.

    No, I dont talk about it much anymore. People are busy, have their own issues, troubles. And truthfully, I’m so tired of others asking me the same questions again and again and then really not listening to the answer. Or those who say, “You look good!” Yay, then why do I feel so lousy? Who wants to hear that? So I smile, thank them and walk away. I know that I need to conserve my energy for myself and those in my life who try to understand. Selfish? Maybe…call it a coping mechanism. And most of the time it works. No. If I need empathy and understanding I head to one of my online support groups. Bc only those who walk the path alongside me truly understand and it is only their opinion and comments that matter to me.

  • jan curtice
    4 years ago

    Here is what I have discovered. Many times “how are you (doing)?” is part of a polite greeting/conversation. People aren’t really looking for or listening for a real answer. Being given one, especially one as heavy as RA, can be overwhelming. What I tend to do is answer from my heart. How am I feeling personally, not physically. “This is a beautiful day … I’m happy today because I’m going to see my daughter (even though it’s because she is accompanying to a medical appointment) … Love this weather…. busy day ahead, but I’m good … etc.” Then if I find the person tunes into what I’m saying and shows an interest in ME as a person, depending on the situation, I step through that door of expressed caring/interest and may share some of the physical challenges and successes I have. If my personal heart-felt statement goes over their head, they aren’t open to listen to anything other than surface conversation. This also helps me to keep a focus on what is really important in my life and not the disease.

    BTW, probably the most difficult person I have to talk to about the medical issues is my mother. She is still in a semi-denial stage after 18 years. I’ve only seen her once in the 3 years since I medically retired because she is afraid to see a body twisted and crippled. However, she has reached a point where she does call and ask questions. She has also been talking to my daughter about coming for a visit. AND it’s OK, … for a parent, it is very difficult to see your child suffering, especially from something you don’t understand. As a daughter, I believe it is important for me to accept and love my mother … and that she doesn’t have to understand everything I go through. She does have my back and does provide support … what she lacks is medical understanding.

    Hugs to all for your RA journey! =^^=

  • Jenn Lebowitz author
    4 years ago

    Hi Jan-

    Thank you so much for sharing this! It’s helpful to hear other people’s experiences with this issue, especially such kind and insightful words of wisdom as you provided.

    As you know, there are many people in this community who understand and care about what you’re going through, so please feel free to come here and let us know how you’re doing any time! We appreciate your being a part of this community.

    Best,

    Jenn (Community Manager, RheumatoidArthritis.net)

  • Poll