"You Would Feel So Much Better if You Just ______."

By Mary Sophia Hawks

2 min read

“You would feel so much better if you just: exercised, lost weight, put on makeup every day, showered every day, did yoga, went out more, quit thinking and talking about being ill, had a positive attitude, etc., etc., yada, yada, yada”!!!!!

I’m sure each of you has heard all these and more. This past week, I got earfuls of this from one of my friends. One of my friends actually said to me, “I don’t want to listen to this, it’s depressing.” Seriously?? I was stunned! I couldn’t believe she wouldn’t listen because it made her depressed. Was I wrong to expect my friend to listen? I’ve listened to her every time she asked.

When friends don't understand life with RA

I believe our friends try to “fix” us so that we can be their “fun” friends again. Sometimes, I just want someone to listen, not to fix. I want someone to acknowledge that this life of mine is rough. I don’t want you to compare yourself to me. I don’t want to hear that you “understand” my pain, because you don’t. Your osteoarthritis is nothing like my rheumatoid arthritis. I know this because I have both. I am not negating the pain of osteoarthritis as it is painful. However, it does not invade my entire life like an autoimmune disease does.

Listening is important in friendships

I do not discuss my limitations often, because I don't want to be a burden. But there are times when it is necessary, and I truly want someone to listen. I just want you to share in my grief. Yes, my grief. We have all lost the dream of what our life would be. In moving forward with the grief of our limitations, we must choose to adapt. I don’t know about you, but I’m not always accepting of my body. Sometimes, I'm tired of adapting to a "new normal."

The unique ways that my life has changed

My life is nothing like I imagined. And yet in many ways, it is more than I dreamed. I never would have found my current job if I hadn’t had limitations. As an RN, it’s gratifying to know I can still make a difference and earn an income as a parish nurse. It is the best job I have had in my 33 years of experience. I also would have never found this community. This community has sustained and encouraged me, and given me the opportunity to write.

The importance of being understood

So how do we respond to these well-meaning friends? What do we do when our friends want to fix us and cannot understand that our bodies refuse? As I learned when my husband died by suicide, no one understands the journey you travel unless they have traveled it as well.

I spend a lot of time on RheumatoidArthritis.net because here I have people who understand me. I don’t feel alone when I am on this site. I also spend time with friends who will listen.

What do you do? I would love to hear great ideas from people who understand.

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.

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Franki King Moderator & Contributor
Thanks for the great article, Mary! I actually don't ever talk about it with my friends anymore because I know they will never understand and that is okay with me. Usually, they can tell when I am having an extra painful day and they ask me, "arthritis?" to which I reply "yes." From that small interaction they know to treat me more gently and more kindly that day which is something that means the most to me. It is spending time with them and dancing with them and laughing with them that reminds me of how lucky I am and how much worse I could have it. Best, Franki, <a href='https://rheumatoidarthritis.net' target='_blank'>RheumatoidArthritis.net</a> Team
1. Mary Sophia Hawks Moderator & Contributor
 Hi Franki! I have 2 friends who listen and make me feel better. I have learned that calling it rheumatoid disease seems to work better. I really appreciate your comments and am glad your friends understand when to be gentle with you. Blessings, Mary Sophia, <a href='https://rheumatoidarthritis.net' target='_blank'>RheumatoidArthritis.net</a> Team
Daniel Malito Moderator & Contributor
<inline-mention user-id="3205404" username="Mary Sophia Hawks"/> I've hear it all - copper bracelets, exercise, gin soaked raisins, glucosamine, unicorn horn - the list goes on and on. I just say thanks and move on, since we know that none of that stuff works or else we'd be using it. For me it's all pharmacological and a bit of physical therapy. That's what works for me, but I also tell people whatever works for you - do it! Doesn't matter if its dancing naked in the pouring rain. If it makes you feel better, do it. Keep on keepin' on, DPM
1. Mary Sophia Hawks Moderator & Contributor
 Thanks Daniel! I know your sense of humor helps you and all of us. We are each unique and need to find what works for us. Blessings, Mary Sophia
L rick Phillips Moderator & Contributor
The best people who understand me is my wife. We have shared experience. It is the share experience that makes the difference in my life. So I hang with people with arthritis and other things.
1. Mary Sophia Hawks Moderator & Contributor
 Great idea Rick!! Thanks for reading! Blessings, Mary Sophia
tckrd Member
This is going to sound harsh and it is. If they say and act that way they are not friends. Get rid of them.
1. Monica Y. Sengupta Moderator & Contributor
 <inline-mention username="tckrd" user-id="3244611"/> There are so many people who I have taken steps away from because of their attitude. Even "good" friends. For me, personally, I don't have the patience for the people who turn their attitudes on a dime so I cut them loose. You may have already read this article I wrote but I wanted to share it anyways, in case you didn't and were interested: https://rheumatoidarthritis.net/living/friendship-how-my-chronic-illness-helped I actually think my RA diagnosis helped me find my true friends! Best, Monica 
2. rhpass Member
 <inline-mention username="Mary Sophia Hawks" user-id="3205404"/> fortunately for me, but not them, my sister AND my best, longest friend (56 yrs) both have RD also. So does my younger brother.we ‘get’ each other, can commiserate and understand each other. We’re all on the same meds, and that let’s us compare our outcomes.
cherie Member
Mary, I just “happened” to read your article and it really touched a part of me that I didn’t know was there. I have a couple of autoimmune diseases, but not rheumatoid arthritis, thank God. I am truly sorry for the pain and suffering you and others endure, because as much as I hurt, I’m not sure I could handle more. I have flare ups and they have intensified over the last year. Because I look fine on the outside, no one understands how hard it is to hold it together sometimes, physically and mentally. I have burrowed in a lot lately and the isolation exacerbates my depression which is worse in the winter and so is the pain. I also have a lot of brain fog so sometimes my usual jovial self is replaced with this other dingy creature, and I can see it in people’s faces when they wonder what’s going on. I try not to talk about it to people who don’t get it. But invariably I slip and think I can trust someone, and that usually ends with me kicking myself for opening up. Thanks for sharing. I honestly had no idea I was holding all this in.
1. Mary Sophia Hawks Moderator & Contributor
 Cherie, It sounds like you have battled through. Feel free to check in anytime. I have found great support here at <a href='https://rheumatoidarthritis.net' target='_blank'>Rheumatoidarthritis.net</a>. Depression is common with chronic pain because the "happy neurotransmitters" are all used up by the pain. Be assertive with your doctors and get help. You are not alone in thinking you can trust another, it happens to all of us. Gentle hugs and blessings to you, Mary Sophia
2. Richard Faust Community Admin
 Hi cherie. I know many in the community understand exactly what you are saying about putting yourself out there, but, as you rightly recognize, isolation can serve to exacerbate depression. Our contributor Nan wrote about the dangers of isolation here: <a href='https://rheumatoidarthritis.net/living/one-is-the-loneliest-number' target='_blank'>https://rheumatoidarthritis.net/living/one-is-the-loneliest-number/</a>. Figuring out what and how much to share with people can certainly be difficult. I wanted to share with you this article from one of our other contributors on what to tell others: <a href='https://rheumatoidarthritis.net/living/what-tell' target='_blank'>https://rheumatoidarthritis.net/living/what-tell/</a>. Know that this community is here for you. Best, Richard (RheumatoidArthritis.net Team)
kalyanispinning2020 Member
My wife is recently diagnosed RA &started medicines.The symptoms are swelling,tremendous pain.After how many times after the medications she will get some relief?
1. RHall Community Admin
 <inline-mention username="Kayro4RA" user-id="3188529"/> I appreciate you sharing your story. There is a lot that you shared that I think many here can relate to. One of the many points that stands out is you touching on the impact of having an invisible condition and how that impacts the dynamic you have with friends and family who don't really "get it" sometimes because they see someone from the outside who doesn't have any condition. That's hard. And it can be a catch-22 of letting people know and being labeled a complainer or misunderstood vs not saying anything at all and still being misunderstood. Just know that you can always have a safe space here of people who have been through it and do understand. Thanks for revealing so much - I know it's helpful for a lot of people with similar experiences. 💜 - Reggie (RheumatoidArthritis.net Team Member)
2. Mary Sophia Hawks Moderator & Contributor
 <inline-mention username="Kayro4RA" user-id="3188529"/> , What a struggling triumph you have! We are here because we understand and we needed each other. Never apologize for needing to vent or share--that's what we do here. Blessings and prayers, Mary Sophia, author/moderator
jjmc Member
I’m hearing a great deal of information from what has worked from friends who have friends who have RA and they think I should be on the same treatment because it worked for them. At the moment I’m trusting my Dr. and I have a good line of communication with him and he is working with me on my other conditions so I’ve really had to set boundaries to say... this is what I’m doing and if if it doesn’t work I’ll consult with him and we will go another route. Boundaries! Boundaries! Boundaries!
1. Kelly Dabel Community Admin
 Thanks for sharing JJMc. Good for you setting those boundaries and letting those around know in a polite but matter of fact way that you and your doctor have a plan in place. Appreciate you sharing and being part of our community. Wishing you the best, Kelly, <a href='https://rheumatoidarthritis.net' target='_blank'>Rheumatoidarthritis.net</a> Team Member
2. Mary Sophia Hawks Moderator & Contributor
 JJMc, Good for you!! No one's journey is the same, and medications are trial and error. Great work! Mary Sophia
akennedy Member
I had someone say to me not too long ago, “You’re just a constant rain cloud aren’t you?” I just sat there and thought to myself, wow, thanks for your support as I go through hell. I had just lost my dad and I was in a whole body flare. I haven’t talked to them since! I keep wanting to and wishing I could, but I can’t..... for someone to be so rude, I don’t need them, and neither do you. Like you, I tried educating them also as to what it was like and why I felt the way i do... but obviously they didn’t “get it”.
1. Richard Faust Community Admin
 Hi akennedy. Sorry you had this experience. Your reaction is not only justified, but self-affirming that you get to decide what you will put up with and who you will allow in your life. I just can't imagine saying something like that to anyone in the best of circumstances, never the less in your situation. I thought of this article from our contributor Angela on friends or rather people who simply won't understand what comes with a chronic illness like RA: <a href='https://rheumatoidarthritis.net/living/invisible-illness-invisible-friends' target='_blank'>https://rheumatoidarthritis.net/living/invisible-illness-invisible-friends</a>. So sorry for your loss. Wishing you the best. Richard (RheumatoidArthritis.net Team)
2. akennedy Member
 <inline-mention username="Richard Faust" user-id="3227544"/> thank you for your understanding. I know I would never ever ever be so rude as to say anything like that to people who are hurting and suffering. I don’t understand some people. It hurts to cut people out but sometimes you have to. You realize they were never there for you like you thought they were. It’s only on groups like this I find the most helpful.
Mary Sophia Hawks Moderator & Contributor
akennedy, First, I am so sorry about your Dad's death. Losing a Dad is really hard. RA flares are very common after a death in the family. Please know that we understand that here. Obviously your "friend" has never had a major loss or any type of medical issue. There is no frame of reference. I think your decision to distance from them is wise. There is a common phrase here in the South, "you can't fix stupid!" I have found that you can't educate it either! In all seriousness, these people aren't stupid, they just have no frame of reference. They cannot imagine what we go through every day just to get out of bed. It's best not to engage someone like this. RA makes you choose your friends wisely. Your circle will be smaller but better. Always know that we are here for you. Virtual hugs and blessings, Mary Sophia, author/moderator
akennedy Member
Thank you very much for your understanding. It is difficult to lessen your circle of friends. But you soon realize who your true friends are sadly. When I was working, I thought I had lots of friends. When I took my leave of absence, no one bothered to check up on me. It was like I hadn’t even existed. If it had been anyone else, I would’ve kept in contact and made sure they knew I was there for them. It’s sad.
KateOne Member
Thank you for sharing this article. There are so many things I could say regarding the experiences you mentioned. I was diagnosed with RA in my late 50s after a bout with Mononucleosis. Unbeknownst to me, I had mono when I’d traveled to Europe to attend my youngest son’s wedding in France. After coming home, I woke up one morning unable to get out of bed. Once diagnosed, after 18 months of suffering worse and worse symptoms, I began researching the disease. I was extremely disappointed that my first rheumatologist’s practice offered no support of any kind. After dealing with his uncaring, cold attitude for about a year, I left his care and wrote him a letter explaining why. It’s not at all that I felt I owed it to him. Rather, I I felt I owed it to myself! I kept moving forward and reaching out for information. Today, 14 years later, I’m thankful to be where I am in many ways. Though I still deal with RA daily, and occasional flares, I’ve learned to live with it as best I can, thanks to finding a wonderful, caring rheumatologist. My faith, family, and friends keep me going. I’m a very grateful person. 
1. Lori Foster Community Admin
 I am glad you advocated for yourself and got rid of that rheumatologist, <inline-mention username="KateOne" user-id="4219196"/>. Maybe your letter opened his eyes. You never know. Sending the best of all wishes your way. - Lori (Team Member) 
2. Mary Sophia Hawks Moderator & Contributor
 <inline-mention username="KateOne" user-id="4219196"/>, I am so glad this article spoke to you. Having a caring rheumatologist is essential. It sounds like you have a wonderful group of support. Blessings, Mary Sophia, author/moderator