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That RA Business, Aunty, Is No Joke

I’ve been following RheumatoidArthritis.net for over a year now. It’s interesting to me how many times the same threads come up. I realize that, while my path is unique, our concerns are the same:

  • Other people’s understanding of RA
  • Frustrating times leading to a diagnosis
  • Communication with medical providers
  • Fears about medication vs hope they will work

What is especially ringing true for me right now is how my Peeps (my people, friends, and family) respond to me. The first thing I want to share is a message I received, a reminder we do have “civilians” on our side.

“That’s legit… the nature of RA… inflammation and how it correlates together with stress on your body cannot be minimized…That RA business, Aunty, is no joke.”

The peeps in my life

There are supportive Peeps in my life. These Peeps are wonderful and loving! They try very hard, they believe me, want to understand, want to help me, want me to feel better, and be more active and live the life I dream of. Even though they can’t know exactly what I’m going through, they try really hard!!!

My husband recently told me: “I know you have more pain than you tell me. I know you have harder days than you talk about. I notice that you seem to toggle between OK or bad. That you’ve adapted to your condition better – more than your condition has gotten better.” If I’m honest with myself, even with my closest Peeps:

I filter what I tell them because I don’t want them to hurt for me…

Instead of specifics, I’ll say “I’m having more pain today.” “My hip is bugging me.” “It’s a low energy day.” On a really bad day, with a chuckle, “I hit the wall.”

My Peeps respond in their own ways. It is hard when someone important to me responds in a way that disappoints me. I feel guilty using the word disappoints, but it rings true. I have always had a tendency to “overshare”. I talk a lot! Meaning when people ask me “How are you?”, it may become a conversation. This isn’t always great.

One of my closest Peeps finds a way to end conversations when I talk about my RA. End the phone call, change the subject or “I gotta get going” and physically leaving. In the past, we’ve had a wide-open, talk-about-anything relationship. Not now. I know they always love me dearly. Yet I worry that they think I’m a whiner? That I am boring?

Or, is it actually really painful for them to hear about my pain and limitations?

We’ve supported each other through so many other very, very difficult times. I’m not going to lose our friendship over this. I’ll just be careful how I approach RA with them. I believe as time moves on, this part of our relationship will evolve because that is who we are.

Some of my Peeps, as many of you have shared, “Just don’t get it.” Compare my RA pain to, what seems to me, their minor aches and pains.

* BUT WAIT – How can I judge or compare their symptoms to mine? It’s real and affects their daily lives. I can’t walk in their shoes. WHOA, it is easy to judge other’s pain…

The hardest one is the Peep who avoids acknowledging the RA altogether.

* I know they don’t want to believe it’s real because they don’t want it to be real.

It is a measure of their love for me and the vulnerability they feel for me and themselves. It breaks my heart a little.

I am asking myself how or what do I share? Who with?

Do I continue to send out group text updates after my doctor’s appointments? We are a medical family, so my assumption has been that it’s good to share the clinical info. Some reply and others don’t. I don’t know how to interpret that. Maybe, with some of my Peeps, clinical isn’t the way to go? Should there be no sharing, unless they ask? Do they need to know that I’m trialing my 3rd biologic and the first one by infusion? And that it scares me? That it’d feel really good to have someone volunteer to be with me for that first 3-hour appointment? It’s not dangerous or urgent to have someone with me, but it would be comforting.

When is it my responsibility to let them know what I need?

I am a Mom, Grandma and Pediatric Nurse. My life is all about raising my family and supporting families. Reaching out to help and comfort others. I know this colors how I interact with my Peeps. I am torn between wanting them to understand and help in my RA life and wanting to be the Mom and Nurse that makes it all okay for them.

* To be completely honest, while I want my Peeps to know and understand, I don’t want it to affect their willingness to call and ask me for help. I don’t want them to feel guilty or sorry for me. I don’t want it to affect all areas of our relationship. Part of me wants to deny that RA affects everything.

Soul searching

There is a lot of soul-searching in everyone’s life, especially if they are facing their own or a loved one’s health crisis. What I’m trying to suggest to myself and our RA.net community is:

  • Look at how you share with your Peeps and what opportunities you give them to understand and help you.
  • Be willing to look at where your Peeps are coming from. Maybe they are scared and hurting for you.
  • Be aware of who it may be a good time to take a break from.
  • Continue to share here, where our paths converge, because
  • You have Peeps here

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

  • ClaraA
    2 months ago

    JoJ, this is a wonderful article. I know your pain. When I call my mom ( we only get to see each other 2 or 3 time’s a year) I want a little love and support and all I get is how her knees or hands are swollen. I’ve got to where I don’t even mention my RA.

  • Jo J author
    2 months ago

    Sigh, I get ya! I’ve been trying hard to accept others complaints of pain. I learned in a work situation that it is never beneficial to take on a “My _______ is worse than yours” comparison. I try to just acknowledge that they we are both having a tough time. And try to remember to not lead with my pain the next time. Doesn’t always work, especially if I’m miserable.

  • David Advent moderator
    2 months ago

    Hi ClaraA, so glad to hear this article resonated with you and your experience! We’re here to support you along your journey with RA; thank you for being a member of this community! -David (RheumatoidArthritis.net Team Member)

  • JeCason
    2 months ago

    Thank you so much for this.. I am new to all this and scared..worried too. Having here to get info and support has helped me know I’m not Alone. But I also need that support here. I fear that won’t be as easy as here.. So thank you for the pointers and the support. Blessings to you. And may your tomorrows be bright as possible..

  • Jo J author
    2 months ago

    JeCason, welcome to this site, it is so helpful. It can be scary. As you can tell from this site everyone’s path is unique, and yet overlaps with someone else’s experience. When reading through RA support sites, I encourage you to remember that it is the nature of the sites to hear more from people who are struggling – they are searching for help and support. There are many people who are responding well to treatment and not checking in as frequently because they are out doing their thing. I think that’s especially important when reading about other’s experiences with medications.

  • Kelly Dabel moderator
    2 months ago

    So glad that our community has been a source of helpful information and support to you JeCason. In addition to speaking with your doctor, this article may be helpful to you on how others in our community adjusted to a new diagnosis: https://rheumatoidarthritis.net/living/how-did-you-react-when-you-were-diagnosed-with-ra/. Wishing you the best, please reach out anytime. Best, Kelly, Rheumatoidarthritis.net Team Member

  • CAnne60
    2 months ago

    Hello.
    Thanks so much for your article! This reminds me of having to keep a good support circle. At times, I still find it, with RA of twenty years under my belt, that I find telling those about my illness is still difficult and only telling so much without the stigma of judgment.

  • Jo J author
    2 months ago

    CAnne, I’m so glad this article touched a note with you! I’m trying to deal with the stigma of judgment also. I’m also trying to check how much of it comes from my own perceptions.

  • Kelly Dabel moderator
    2 months ago

    Yes! So glad that this was helpful to you CAnne60 and that it reminded you that you are not alone here. We’re here to support you. I know many here can relate to the challenge of knowing how much to share with a new friend. Wishing you the best. Kelly, Rheumatoidarthritis.net Team Member

  • bagglady
    2 months ago

    I work in the medical field and thank goodness most of the nurses I work with know RA is not just the arthritis others sometimes confuse with RA. My husband has not always understood but I have educated him to the fact that RA and the medication should be taken VERY seriously. Some days RA consumes my life and I hate that but when we do “hit the wall” I’m not sure what else we can do.

  • Jo J author
    2 months ago

    Bagglady, I’m also in the medical field and have multiple medical professionals in my family. Then there’s the one with NO medical experience, but stayed at a Holiday Inn…

  • Kelly Dabel moderator
    2 months ago

    Thanks for sharing bagglady. So glad that you have support at work and at home. We appreciate you commenting and being part of our community. Best, Kelly, Rheumatoidarthritis.net Team Member

  • B.Hughes
    3 months ago

    Or then again you have peeps who just don’t care. They go on with their lives as though you don’t exist. They never call and ask how your doing. They have never tried to talk to you about what your going through . So you just shut down almost completely. Its not enough that your battling this awful disease. The emotional aspect can be just as bad.when you feel all alone is as bad as having the disease.

  • Jo J author
    3 months ago

    I’m sorry you are experiencing this. It’s such a tough addition on top of the RA course. The feeling of isolation can be profound. I hope you can find some Peeps here. Is there one or two people in your life you can reach out to and discuss this very issue? They may just be ignorant to your feelings and needs. I found an Arthritis exercise program at the Y that helped me physically and socially.

  • Kathy Costelloe
    4 months ago

    Hello friends! I am trying to link in with people via the comments yet cant find how to! I see the friends tab yet cannot see how to add nor request.?

  • keeppushin
    4 months ago

    How very insightful. I have a hard time knowing what to share with whom. My significant other is going through chemo for a tumor. His girls (my “girls” with 4 children between them – my grand babies) are of course concerned for daddy. My children – son has epilepsy and my daughter adopted a little girl almost two years ago. His mom and sister have health issues. My mom is not the picture of health. And my brother has just spent the last year going through surgery for his degenerative condition. The fact that I have RA gets lost in the cracks. Some days it’d be nice to unload my fears and issues. But who would that person be?

  • Jo J author
    4 months ago

    I get ya, keeppushin! Over the last seven weeks I’ve had influenza, helped my mom in law through hospice, hosted meals for her funeral weekend, and traveled to Seattle to babysit 4 grandkids. From Seattle I fly to LA to babysit 2 grandkids for 12 days.

    I’m definitely flaring now. I can’t stand to tell my kids no to babysitting. Both families are getting ready to move over 1500 miled away, and I’m trying to pack in visits while they are all still in the west. I minimize my symptoms out of selfishness and not wanting to be weak. I’d totally lecture a friend if they were making these choices…

  • bagglady
    2 months ago

    Wow! Our lives get complicated, but you do need to take care of yourself. We, as nurses, tend to take care of everyone else and then suffer. I babysit my 3 month old grandson occasionally and usually pay for it the next day. Both of you take care.

  • stormlight
    4 months ago

    Yeah, I use those kinds of terms with my husband too. Stuff like “My toes feel like they’re broken, but they can’t be”, or “I feel like the caretaker in ‘The Shining’ after Jack Nicholson got at him with the axe”, or “Why can’t I get local anaesthetic on prescription?”

  • RHPass
    4 months ago

    My husband is my ‘front line triage’ point.He gets the first hand view and sometimes suffers for it. the other 3 of my closest ‘crew’ are siblings and a lifelong friend. We ALL have RA.yes, both siblings and my ‘chosen’ sibling (friends for 50 yrs). We get it. And we usually all feel the same way at the same time, due to weather & stressors mostly. We live great distances apart, so virtual hugs mean the most.
    I would be lost without them, and I believe that would be the same for them, with me.

  • karenb54
    4 months ago

    I can so relate to you! My go-to phrase is, “I’m having a bad hair day.” No one understands the daily pain but they seem to grasp a bad hair day. I say, keep sharing but using terms people understand. No one will understand the daily pain until they were to suffer the same (which I never want anyone to suffer). People don’t get it until it hits them. A good example, since my RA began 4 years ago, I cannot go to the local mall and just wander around for hours anymore. My body hurts too badly and I get tired quickly. My BFF (who sort of understands how I feel) wanted to go to the mall and kept asking me to go. Well, my BFF is getting the symptoms of RA. Part way through the mall, she asked to sit down, she was in a lot of pain and quite tired. At that point, she looked and me and realized the pain I feel. Now, I wouldn’t wish this on anyone but it was nice to know that someone actually now understands how I feel.

  • Nonnie
    6 months ago

    Thank you for this. I have walked this path for more than 2 years and I find myself in a place now where I feel like taking a break from my peeps – I know we are all busy and we all have our own problems, but if I tell you I am sick ( which I have been for a month now) I really do not want a message telling me if I have a house I am more lucky than who ever etc. I know I have to be grateful for so many things, but sometimes I need to say I don’t feel well, let alone tell them that I am scared that it may be the mtx that could be affecting my lungs. So yes, peeps are good, but sometimes I think one needs a break and just share with people going through the same things, or maybe this disease has in a way made me cynical. Who knows?

  • Monica Y. Sengupta moderator
    6 months ago

    Hey @nonnie! Thanks for reaching out. It’s really frustrating when friends come back with those comments. I used to take them personally but I realized their snarky responses were on them. I didn’t do anything to warrant them but I guess, it triggered something in them and I was their outlet.

    Of course, it doesn’t make it right. Whatever you are feeling is valid and real and except those who know about chronic conditions just don’t get it.

    Have you spoken to your doctor about your MTX concerns? This editorial article mentions that Methotrexate can affect the lungs. https://rheumatoidarthritis.net/treatment/methotrexate/ It’s important to bring up these concerns with your healthcare team if you haven’t already.

    Please know you can come here any time whenever you need support. We are here for you! ~Monica

  • Jo J author
    6 months ago

    Hi Nonnie, thanks for your response. I was is such a similar place when I wrote this. I’m just not sure sometimes what guides other’s thoughts and responses. Good on you for recognizing it’s a time to step back for a bit. With one of my Peeps I found it did help to reset our relationship when I took time away and tried to not be angry. I chose to not offer info on my condition unless they genuinely seemed interested and asked. And even then I kept it brief. Eventually, they did start to express more interest. I think some Peeps just don’t understand the chronicity and variability of RA. Surely you take your med, have a positive attitude and it disappears, Right?!? Oh yeah, and just eat right. Ugh.

    It must be scary to be worried about MTX and respiratory issues! I’m hoping you have been able to discuss this with your prescriber. I had some toxicity issues on it also and felt much better with a med adjustment. I hope your doc has talked with you about Folic Acid usage with MTX. I know it helps with some side effects, but I don’t know about respiratory symptoms. It’s a good conversation to have.

    I hope you are feeling better soon. I’m glad you use this site to find Peeps who understand. I moving into February and one month closer to Spring will help us all. Jo

  • Nonnie
    5 months ago

    Hi I will see my rhumatoligist this Tuesday when I will discuss this with her. My GP tested my heart enzymes and it was fine. He thinks it could be stress related. I have been under a lot of stress the past 6 months. But did my 1st park run this morning for 2019 and could not believe my time..nearly 7min off my previous personal best. Going to struggle to beat this new one of 42 min. Still taking a break from peeps and miss them. Good weekend to all

  • Monica Y. Sengupta moderator
    7 months ago

    Thanks for sharing, Jo J!

    I am so glad you have friends who are so supportive. I’m still learning who my true friends. It’s interesting how when life gets a little tough people just bolt. On the other hand, as you said, some really stay and do their best.

    I wrote an article a while ago on the subject, I thought you might be interested in it: https://rheumatoidarthritis.net/living/friendship-how-my-chronic-illness-helped/

    I’m going to echo Richard and say the same thing, we are always here for you when you need us!

    Thanks again for sharing! ~Monica

  • Richard Faust moderator
    8 months ago

    Hi Jo J. It certainly can be difficult to to figure out how to navigate what to say and how much to share with people about RA. Jut as everyone with RA is different, as you point out, everyone the person with RA encounters is different. Some can simply handle more information than others and reactions do not necessarily mean people care more or less. One of our contributors, Kelly Mack, was diagnosed at age two, so has had a lifetime of trying to figure out how much to share/say (full disclosure I’m her husband). In this article on what to tell others she notes “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:” https://rheumatoidarthritis.net/living/what-tell/. Wishing you the best and you are are absolutely correct, “You have Peeps here. Richard (RheumatoidArthritis.net Team)

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