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Grin and Bear It

Grin and Bear It

I recently made some new friends and I have yet to tell them about my Rheumatoid Arthritis. They know I have it because of social media but I have yet to say “I have RA and this is what it is.” In a way, it’s nice that I don’t get the look (you know, the one with the slight head tilt) or the questions (plus the look). I don’t have to talk about it or bring it up. It’s just nice to forget about my condition just for a little while.

Is it biology?

Now on days when my body is screaming in agony and I still have to go out to work or hang out with friends; on the days I can’t hide my pain or disability I push through and try to hide my RA as much as possible. Why? Is it pride? Is it stubbornness? Is it biology?

Every other mammal in the animal kingdom is attracted to the prize of the species; the one with the best genes (the brightest colors, the most strength, etc.). Humans are the same way. And I’m not talking just romantic relationships, any ones really. We are attracted to people who are confident, bright and have similar interests to our own.

Is nature working against me?

I recently wrote about how I felt like I scraped the bottom of the human barrel and (unfortunately) found myself comparing myself to others. I make a huge effort, sometimes using more energy than I have, to make myself seem “normal”. Seriously, though…Why? We all know I am extraordinarily proud… and stubborn… Do I also have sheer nature working against me?

For some odd reason, whenever I tell people about my RA they take it as personal slight. I’m not sure why because as far as I’m aware, they don’t live with the same mobility issues, the same pain, the same chronic condition. But, somehow, they think that because I have a disability it somehow affects them; that they have to make accommodations for me.

I can’t say that I know what people think, maybe they just don’t like that I’m not as strong or “cool” as they thought I was. Maybe it is pure biology! In their eyes I am at the bottom of the pack and they can’t be bothered with me.

Looking “normal”

I do such a good job of looking “normal” that I don’t really blame people for not believing me. Why should they? I still do everything I did before the diagnosis (albeit a little worse) and my pain and the side effects are internal. Others don’t see it so why should they believe it? (heh, that rhymes!)

People get annoyed because I “talk about it too much” (imagine having RA!). I have to hear about their highly boring life yet I can’t mention I need to stand for a second or make a quick lap to unstick? Is it my problem they are uncomfortable hearing self-deprecating jokes so I need to zip the lip? That sounds like a them problem not a me one.

Maybe it’s pure biology. We like things to be easy and simple. We look to the least amount of work, we often choose flight over fight if the result is not worth our energy.

Maybe because I’m not the physical crème of the crop others just can’t be bothered with me and maybe that’s why I grin and bear the burden silently; so I can assimilate into the usual society and still be viewed as viable human being.

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

  • nanag
    4 months ago

    This is my first time joining any kind a group for anything or putting a post publicly. So I’ll give it a try.

    I’ve had RA for at least two years and I think a lot of my family Don’t realize what it can do to you and how you feel. I even had my sister comment about how her neighbor who has RA that how terrible it is for her but hasn’t really acknowledge mine. But that’s OK I’m a lot quieter and I really don’t share much about myself. My daughter is a nurse practitioner and sometimes I feel she doesn’t even get it. Or maybe she just doesn’t want to admit it. My biggest struggles are being so tired. I also have fibromyalgia so sometimes it’s hard to tell which is having more of a bad day the RA or the fibro. I own a business and I know I’m not the same person that started the business 10 years ago and all I think about is quitting so I can just be home. It’s hard being perky in a retail business when you’re exhausted and hurting.

    I think what scares me most as I read about the disease and read about other peoples struggles is where this could go. It Really scares me to think that your organs can be affected not just my hands, feet and joints. I don’t know if it’s drugs or the disease but my brain just does not function well at times I can’t remember things from yesterday let alone things to run my shop! Now that’s scary..

    So there you have it. Now I’ll hit post quickly so I cannot chicken out

  • Lawrence 'rick' Phillips moderator
    4 months ago

    I think what is important is to not let being afraid to the point where you do not seek adequate treatment. Many of your fears are legitimate if you do not seek treatment.

    I hope you will find or have found the best rheumatologist you can and then follow that treatment plan. Nothing is perfect, but the worst thing would be to worry and not find the best treatment for yourself.

    Oh and even better keep participating in our community. We value you and no need to be worried about posting, you did a great job.

  • nanag
    4 months ago

    Lawrence ‘rick’ Phillips, I am on my second rheumatologist and I’m hoping he is making good choices. I guess you would say I have the sneaky kind that doesn’t show up in the tests. I don’t have red inflamed hot joints but MRI shows erosions. It’s mostly pain and stiffness, swelling so sometimes I wonder if we have the right diagnosis. Your brain likes to play games and tell you differently! I’m not sure exactly what the meds are supposed to make you feel like, am I supposed to be completely pain-free or comfortable? I know if I don’t take it due to a cold I really notice the difference. One of the harder things is always getting sick on this medication because then they say you have to go off it, so I’m on and off all the time. How do you know if the medication is right? Maybe one day I have an aha day and will now I’m on the right track. Thanks for listening!

  • cac3711
    4 months ago

    Nanag – I am pretty much In the same position as you. I am pretty new to this site is well, just diagnosed this December & still trying to find the right meds, but I can tell you this site really lifts me when I need to be lifted. We will get through this by holding each other‘s hands And be here for each other. Every day they Are finding out more and new drugs come out. I have chosen to try to eat a plant-based diet to the best of my ability (yes I cheat!) and I’m feeling a little better. As everyone has told me in this group we are all here for each other. Every morning I get up & I recite everything I’m grateful for and try to start every day on a positive note & meditation is become a big part of my life. Keep fighting the fight……

  • nanag
    4 months ago

    Thank you for the response. I am lactose in tolerant plus eggs so i do leave most dairy and things with eggs out of my diet. I like almond milk and coconut yogurt so they are my subs. Diet is a problem most of the time. I really don’t eat right. I usually have granola for breakfast and coffee. Lunch is never until about 2or 3 due to working and even then its something simple like soup or salad. Supper is mostly meats and veggies. I just don’t eat regularly which I know is a big problem but just cannot for the life of me get things worked out. Plus I cringe at grocery shopping and cooking. My husband does do most of the shopping which he knows what I cannot eat so that helps. Ugh… nothing is simple!

  • cac3711
    4 months ago

    Thanks to you all! As I’m sure you’re all aware when you first get diagnosed nothing but negativity sets in. This website and your Facebook is really making me reset the struggles to a positive light. I already suffer from Graves’ disease and I remember how many years it took to regulate my thyroid that’s the part I’m not looking forward too. Thank you again!

  • Kelly Dabel moderator
    4 months ago

    Thank you so much for commenting and sharing your feedback cac3711. Glad to hear that our site and community here have been an encouragement to you. Please reach out anytime. We’re here to support you in this. Best, Kelly, Rheumatoidarthritis.net Team Member

  • Susie Que
    4 months ago

    This is me on so many levels!
    I don’t tell anyone that I have RA unless I have to. Whenever I used to tell people I had it, they would start in with I’m so sorry you poor thing. I’m not telling people for pity, I hate being pitied. I very talented at hiding it from strangers with my family sees it.

  • Monica Y. Sengupta moderator author
    4 months ago

    Hey @susieque!! Thank you so much for commenting on my article! I really appreciate it.

    I understand (as I’m sure many community members do, as well) the frustration of people almost looking down on me after I tell them about the RA. Yes, I have a chronic condition that affects my life but it doesn’t define me!

    Please know if you ever feel like you don’t/can’t hide the RA you are always welcome here. We will listen!!

    All the best, Monica

  • Manduh
    4 months ago

    This is such a relatable article. I am 26 and moved to California 2 years ago. I’ve had RA for 4 years and the stress of moving and a new job caused a lot of inflammation. I hid my RA from my friends for about a year and just told some of my coworkers about my conditions. I felt like if I told them they would treat me differently. Since opening up to them about RA they have been so supportive and helpful! I am always putting on a smile and pushing through the pain. I’ve gone through a lot of physical and emotional pain (especially prior to my diagnosis) I just remind myself that some people have it worse then me!

    Thanks for sharing!

  • Monica Y. Sengupta moderator author
    4 months ago

    Hey @manduh! I’m a fellow 20-something with RA, too!

    I was diagnosed about nine years ago at 20 years old. I definitely relate to the stress of moving, job searching and other social issues. By the way, outside of my family, I didn’t tell anyone about my RD for a year, too!

    I am really glad your co-workers are so supportive. I wish I had spoken to mine sooner. I didn’t (for the same reason as you) but they have really helped me and had my back.

    Thank you so much for the kind comment on my article! Best, Monica

  • cac3711
    4 months ago

    I can relate to this article and I thank you because it is helping reset my mindset. My (cocktail) has not been found yet so I live in pain every day and unfortunately I cannot hide that I have RA. Everyone asks what’s wrong but nobody offers to help. I have realized though, since being diagnosed 7 months ago, I have to learn how to continue to do on my own in pain or not. I really wish when you tell someone what you have that they go to the Internet to figure out what it is because I’m not WebMD & I feel that no doctor has all the information on this auto immune disease as well as others. Thank you so much again for your article.

  • Monica Y. Sengupta moderator author
    4 months ago

    Hey @cac3711! Thank you so much for sharing on my article!!

    It really means a lot that my article resonated with you.

    I (and I’m sure, other community members) understand the frustration that people don’t want to educate themselves; especially the people we are closest to.

    I really hope you find your right medications soon. From personal experience, the first few months were really tough because we were switching medications often but I can say now, I am in a good place with disease management. May I ask, what medications are you taking right now and do you think any of them are effective?

    A new diagnosis is really scary so please reach out if you ever want to talk! We are here for you and will listen.

    Best, Monica

  • Kelly Dabel moderator
    4 months ago

    Thank you so much for sharing cac3711. I know many here in our community can relate to not wanting to be solely responsibly for educating everyone you talk to on what RA is and what it can entail. You are not alone here. Wishing you some relief ahead. Best, Kelly, Rheumatoidarthritis.net Team Member

  • yolirankin
    4 months ago

    I completely agree with this article. Having RA completely changed my life and I do tell people I have it and like you said, they don’t understand. One time I was applying for a job and I told the employee I had it and she understood! She knew that I would have down times. I didn’t get the job, nor did I really want it, I just appreciated that she knew what I was dealing with! So refreshing.

  • Monica Y. Sengupta moderator author
    4 months ago

    Hey @yolirankin!!

    Thank you so much for commenting on my article! I really appreciate it.

    I love your story. It warms my heart when people understand or empathetic to our condition.

    I’ve been so lucky that my bosses are so supportive of me and it really takes a lot of stress off.

    All the best, Monica

  • Kelly Dabel moderator
    4 months ago

    Thank you for sharing yolirankin. So glad this article was helpful to you. I hope that our community here is refreshing to you and reminds you that you are not alone in this. Wishing you the best, Kelly, Rheumatoidarthritis.net Team Member

  • g2wa8b
    11 months ago

    Can anyone recommend an online RA support group? Thanks in advance.
    Ruby

  • Monica Y. Sengupta moderator author
    10 months ago

    Hey Ruby (@g2wa8b)! Thanks for reaching out on my article!

    Have you checked out our Facebook page (https://www.facebook.com/RheumatoidArthritisDotNet/) Community members check the comments section on new articles frequently and are very supportive and kind.

    If you search “Rheumatoid Arthritis” on Facebook itself there are some great support groups that pop up pretty immediately. You can tell from community rules how kind the people generally are. I hope this helps and please reach out here if you ever want to talk! ~Monica

  • HH66
    11 months ago

    Hi Monica –
    Have you considered a support group.? Your article speaks volumes to me. I get it. And I’ve found a whole tribe of friends in the Arthritis Foundation support groups. They are all over the country and it’s nice to hang around with people who get it too. They can just read your face and know. We have fun outings and educational programs that also teach us how to be kind to ourselves and surprisingly get us to push ourselves to have a little fun. Think about it! Maybe you can find your tribe too.

    Heidi

  • Monica Y. Sengupta moderator author
    10 months ago

    Hey Heidi!! (@hh66) Thank you so much for your lovely comment. I am so sorry I am just responding now!!

    I really should look into it. I find the online community here at RA.net so kind, caring and helpful that I want to look into a physical group as well.

    Thanks again! I hope you are doing well! ~Monica

  • norraff67
    11 months ago

    Dear Monica,

    I know what you mean. I have had RA for almost 22 years. Back then I think I tried not to complain at all if I could. I’m just a very private person and also, I didn’t want to come off as someone who was this huge whiner. I worked full-time with 4 kids, then part-time and continued to lead my normal life. At least to people on the outside. About 10 years ago, I developed Fibromyalgia. In the past 5 years I have stopped working. It was to the point where I spent Friday after work until Monday morning in bed. No life at all. I think people got so used to me acting “fine” that they don’t see it anymore. My kids are older now and even though my health is worse, there are people who think I don’t work because I’m lazy. Ha! Makes me laugh. My hands are deformed and twisted and I have RA in basically every joint, but people see me and think I look “fine” so I must be fine. I don’t even bother trying to explain that there are times when I’m out that I could easily curl up on the floor because I am that miserable. When people hear you have MS or Lupus even they seem more sympathetic but I think people just consider RA just some mild arthritis. I do have some fabulous friends who have understood from the beginning just how hard some days, weeks, months are just to get through a day. I know this is very long winded, sorry, just needed to get this out I guess. Hang in there.

  • Monica Y. Sengupta moderator author
    10 months ago

    Hey @norraff67!! I am so so so sorry I didn’t reply to your comment earlier!

    First, please never apologize for commenting and venting on my articles! I love to hear other people’s experiences and hey, we all know how frustrating and isolating this disease can be.

    It sometimes really amazes me how people choose not to believe us. Even though our symptoms are (mostly) internal it’s pretty obvious on our faces we’re not well. My father tries to remind that people are generally pretty self-absorbed. Lol.

    Though, like you, I do have some great friends who are there for me and I appreciate them all the more because of it.

    Thanks so much for commenting again and please reach out whenever you want! ~Monica

  • Mary Sophia Hawks moderator
    11 months ago

    Oh Monica! I hurt for you as I read this. Very few people without autoimmune diseases understand what we go through just to get out of bed. I believe that many of your friends are afraid that it will happen to them. OR, they aren’t true friends who will listen and help. Instead, they are acquaintances along for a fun time. Because of your young age, your friends have not had issues that required them to become truly compassionate.
    This is not your fault! And, you should not have to grin and bear it alone. If you are having a tough day, go ahead and show your symptoms outwardly. What you will find is that your true friend(s) will emerge with caring instincts. The rest will be uncomfortable, which is their issue and not your fault.
    Most of all, remember that you have friends here who understand and will always listen.

    MS

  • Monica Y. Sengupta moderator author
    10 months ago

    Hey Mary Sophia!!

    You are so right. I have found out who my friends are. There are the people I’ll only see when I’m well and there are the best friends who offer to stop walking so I can take a breather or help me onto a sidewalk curb without asking (because they see it coming).

    I definitely think being young with a disability has its obstacles but hopefully I can navigate and find the good people! ~Monica

  • Richard Faust moderator
    11 months ago

    Thanks for sharing such kind thoughts MS. My wife, Kelly Mack (a contributor here), was diagnosed at two years old and her RA has pretty much always been visible, so has had a lifetime of experience in how others most often don’t know quite how to handle RA (or any disability for that matter). In this article she writes about managing other people’s perceptions of RA: https://rheumatoidarthritis.net/living/managing-peoples-perceptions-ra/. Although the title could probably just as easily be “not managing other people’s perceptions.” Wishing you the best. Richard (RheumatoidArthritis.net Team)

  • Mary Sophia Hawks moderator
    11 months ago

    Thanks Richard! I always love Kelly’s articles and yours too.
    MS

  • Daniel Malito moderator
    11 months ago

    @mysengupta I have been lucky in that my friends have been amazing – a unique experience that I had no idea was unique until I talked to other RA patients. I even remember my friends carrying me into bed several times. The problem I have now is that aftermy wife left now i have to date. UGH. So the whole “when do I talk” comes into play. Now with the added cancer and everything, it’s like how long do I sit on that? Too early and it scares them off, too late and they feel like you lied to them. I get it. Keep on keepin’ on, DPM

  • Monica Y. Sengupta moderator author
    10 months ago

    Thanks for commenting Daniel!! So, funny story (ish), I disclosed my condition to my best friend and I had to endure snide comments about how I was lazy and unmotivated or how I talked about my condition too much…

    Let’s just say he’s not my best friend anymore. Though, in the last few months he has had change of heart and is trying to be more empathetic. It’s a little weird honestly!

    On the flip side, I can hand my silverware to my true best friend and without asking he knows I need help cutting my food.

  • Mary Sophia Hawks moderator
    11 months ago

    Daniel, I understand. In addition to RA, my husband committed suicide. Try talking about that on a date!
    In all seriousness, I’m so sorry for your RA and cancer. It sounds like you have fabulous friends. For me, my friends are enough.
    MS

  • tckrd
    11 months ago

    Keep going you will find the right person you can trust again.

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