Self Image and Living with Rheumatoid Arthritis

Does living with Rheumatoid Arthritis affect our superpowers?

We’ve talked before about the ways living with Rheumatoid Arthritis affects the way we view ourselves – remember the RA Self Definition Fairy? And maybe you read the blog about remembering the old me in the scrapbook before Rheumatoid Arthritis. Someone did yesterday – and her response made me cry.

My younger children barely remember the mom who did everything. I’ll often ask them, “Do you remember when we did so and so?” It’s no fun when they say, “No.” Thank God I’ve always taken lots of photos. And thank goodness for big sisters who remember it all.

The youngest one never saw me like a super hero. It was his birth that kicked off this little party called a flare that has been going on nonstop for the last few years. Roo never saw the Momma who dashed around the house like Flash Gordon.  She worked alone, like Wonder Woman, but welcomed being the one whom others could depend on.  Roo never had the mom who could plan endless perfect days for him and seem to make miracles appear like picnics, kite flying, treasure hunts, and green eggs & ham.

The people who meet me now have no idea who that woman is. They only know this lady with unkempt nails who walks funny and keeps talking about the latest RA medicine to be approved. I can’t think of a superhero like that. Can you?

You know what I miss? I miss respect. Too many doctors think patients exaggerate RA pain. Relatives think I take unnecessary medicines. And my neighbors just shake their heads about the lazy lady’s untidy yard and grimy driveway… I could go on, but you get the idea.

You know what I’m learning? To cherish more the way my kids love me just for being their mom. Yeah, I still grieve.  But, most of the time I’m too busy cheering on real superheroes: my kids!

Fun quiz that has nothing to do with living with Rheumatoid Arthritis

Like many women, I’ve always tried to be a hero to my family, never letting them down. I found this fun Marvel super hero personality test you might like to try. The quizzes I took said I’m most like Jean Grey or Spider Girl. My favorite was always Wonder Woman, but this was still exciting news!

Recommended reading:

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

28 thoughts on “Self Image and Living with Rheumatoid Arthritis

  • April 7, 2010 at 9:16 am
    Permalink

    It’s just not fair, is it? I am printing this to take to my Rheumatologist appointment on Friday…I love the sentence about missing respect!

    Reply
    • April 7, 2010 at 9:43 am
      Permalink

      Lol. I have many more scholarly articles to show him, but go right ahead. 😀

      Reply
  • April 7, 2010 at 9:49 am
    Permalink

    Kelly, your post was wonderfully stated. It brought me to tears, not because I am sad for you (okay I lied I am sad for you, I am sad for me too and all of the RA warriors) because of how you can write out what is happening to all of us. How RA changes our lives forever. How it effects us and the people around us. I don’t know, but I have a strong feeling your children love you no matter what you do or can’t do anymore. I bet you are a superhero to them, just like they are superheros to you. You are a superhero to me for setting up and running this blog. It is a major source of information and much needed support to many people who are suffering. That my friend takes super powers and you have them!!

    Reply
  • April 7, 2010 at 9:59 am
    Permalink

    Bless you, Kelly! YOU ARE a hero in my book… as are your children! Praying for you to have better days. I know it’s hard.

    Reply
  • April 7, 2010 at 10:06 am
    Permalink

    I’m thankful that I ran across this site. It’s comforting sharing experiences with others who really “understand.” I’ve had RA for about 11 years now. Gone through every emotion several times over. The phrases I often tell myself are, “make hay when the sun shines” ; “this too shall pass” and “RA may win today, but I will win tomorrow.” Maybe these may help someone else get through a rough patch. (((HUGS))) to each and everyone.

    Reply
  • April 7, 2010 at 10:20 am
    Permalink

    u r feeling bad that ur kids hv not seen u active……n here in my case,my mom has not seen me……
    after so many days,when such a day is here….its lovely as my mom is happy…..
    ur past without Ra make u feel sad,bt i hv little memories of that time……so it will help me in future….no crying remembering past so nice days n hurting myself…

    but smtimes it hurts even more,like i dnt hv such pain free life’s memories even….
    i seriously dnt remember exactly.though i just reched 7..

    Reply
    • April 7, 2010 at 10:31 am
      Permalink

      :heart: Dear Rachel, I wish I could give you and your mom big tearful hugs. I am so glad it is me instead of my kids that hurt and I bet your mom wishes that too. It must be hard for her to see you hurt. I can understand a little bit since 2 of my much loved angels are deaf. I always told them I wished I could take that instead.

      Reply
  • April 7, 2010 at 10:25 am
    Permalink

    Wow! I can SO relate to that! Lately I look at my kids & just about burst with pride & appreciation. They can be the biggest challenge in our lives but they certainly bring us the most blessings! I am so grateful to be a mom!!

    Reply
    • April 7, 2010 at 8:32 pm
      Permalink

      Yes! I had an extra chance for this today when my girl’s SAT scores came back – I am so excited for her. And my Boy Scouts… and my Roo reading his books… :dance:

      Reply
  • April 7, 2010 at 11:03 am
    Permalink

    Ah, respect (makes me think of Aretha, someone here is old enough to remember that song!).

    Why do we have to fight as RA Warriors to recieve the bare minimun of respect that would be given to any able bodied human being? For me it’s with new docs, nurses and family members.

    The family is the worst part, their denial is striking. All four of us have the disease, but I was hit with it at 17, they were all in their 60’s. Should I ever land in a scooter (major fear), it will be because I’m lazy and crazy. Since my Mom died they are all back to furiously trying to define me and control me. My therapist is helping me make my break with them permanent. It needs to happen, because our family is so extremely dysfunctional. She asked me if I really wanted to to die on this hill, the hill being trying to settle my Mom’s very small estate, the RA++ and the stress. She’s truly worried the stress will give me a heart attack.

    After a night of deep thought, I decided no, I won’t die on this hill, if I can help it. The few family ties I retain, will have new boundaries, good, old Aunt Nancy, the one who laughed and played and denied my RA is gone. It remains to be seen what will now define my life, because it will not be them. Only their pain is real, mine is a figment of my imagination.

    Sing it, Aretha! I have no more time to give to people with no respect for me.

    Reply
  • April 7, 2010 at 11:07 am
    Permalink

    One thing I am oddly enough thankful for so many days is that having been diagnosed with JRA, (sorry I know its now JA, or JIA, or something else but to me it will always be JRA), at 18 months old there are so many things I don’t miss because they never were. This doesn’t mean I haven’t lost other “abilities” with each flare, I have. What is different is I learned how to not look back early on. Or…I guess I should phrase that differently, because I do look back. What I should say is I learned how to look back, wave and either move forward or side-step to the left or right to make any necessary adjustments.

    This family of diseases, which is what I like to call them, does have the potential to steal so much away from all of us, from energy to resources to potential happiness. What it can’t steal is our hearts, souls and willingness to give back to each other as well as our communities and most importantly our families. I wouldn’t be the Mom I am without Arthur along for the ride.

    And while I have many, many a day when I wish for nothing more than to be able to take along hike with my daughter, or slide down the slide with her, I know I am teaching her lessons she wouldn’t learn otherwise. Compassion, empathy, and love without physical conditions put on it.

    So hang in there everyone!

    Reply
    • April 7, 2010 at 12:28 pm
      Permalink

      Beautifully stated Kirsten! To Kirsten and Kelly: my first brush with RA was with my best friend whose Mom has RA. My friend loves her mom unconditionally and has the utmost respect and love and kindness towards her mom, even though she has never been the classic superhero. She will tell you her Mom is the bravest, strongest most wonderful person in the world, who is always there for her, despite her own pain. Now that I too have RA, I hope my kids grow up to respect and love me the way my friend does her mom, and I’m sure your kids feel you are still their personal superhero!

      Reply
  • April 7, 2010 at 12:07 pm
    Permalink

    I can absolutely relate to the need to grieve about what has happened and what might have been. I had my first bout with autoimmune disease on my honeymoon at 29 years old.The list of ‘might have been” could go on forever. I’ve found that the best way to deal with this is to do in in “contained” moments. I create the space and stay there until I’m ready to leave. That way it doesn’t spill out onto others or my behavior.

    Grieving, noticing and experiencing loss is critical to living with what life throws you. But, like most emotions, they’re most helpful when we can grow from them.

    Reply
  • April 7, 2010 at 12:54 pm
    Permalink

    RESPECT – such a small word for such a LARGE thing. Sometimes I think people are afraid. The disease is invisible – maybe it could happen to them……………………or maybe they are just insensitive cads who have no understanding.

    I am finally getting through to the people I work with AND the people I work for……..even though it is a small step it has made a huge difference for me at work.

    I shared the information you posted for people ‘living with people with RA’ and it has made such a difference.

    Thanks again as always

    Reply
  • April 7, 2010 at 5:41 pm
    Permalink

    Bless You all – I am SO grateful each day for being guided to RA Warriors (Kelly, I don’t know how you do it but THANK YOU – the more I learn about you the more amazed I am)! Keep up the Spirit everyone – it so encouraging and ispirational. Everyone has their trials to endure but attitude (and of course humor) has a lot to do with enjoying what you are dealt with in life. Wish you all comfort!

    Reply
  • April 7, 2010 at 5:44 pm
    Permalink

    I’ve never been supermom either. My RA started when my first child was 5 months old. I never got down on the floor to play because I could not get back up. I couldn’t run or skate because of fear of falling. My children loved me anyway. They are older now and show no negative effects of having a mom who couldn’t play. They are, however, kind, compassionate and thoughtful to others. They were raised to help by opening doors, carrying things for me and helping with household chores. They are wonderful young adults who I am proud to say I am their mom.

    RA is a horrible disease and it robbed me of fun adventures with my children. Thankfully they do not feel this way because they didn’t know the “me” before RA and they love me just as I am. I am truly blessed.

    Reply
    • April 7, 2010 at 8:39 pm
      Permalink

      Jennifer, thank you for wisdom from experience. Nodding inside!(My neck doesn’t dare :razzmad: )

      Reply
  • April 7, 2010 at 8:19 pm
    Permalink

    i got tears in my eyes when i started reading this. I was diagnosed in august with ra. the road has been treacherous!! had to quit work because i could no longer work, pickup anything, ect. DR’s treated me as a drug seeker because i was so desperate for pain relief. i HAD TO MOVE IN WITH MY MOTHER AND LET MY 16 YEAR OLD DAUGHTER GO LIVE WITH HER DAD. i wanted her to have as normal life as possible. she took care of me until i got the help i needed. No one who hasnt experienced it understands. ive accepted that. I am so happy that I found this group!!!

    Reply
  • April 7, 2010 at 8:38 pm
    Permalink

    Hey Kelly, just took the superhero test and it said (not kidding) that I’m most like Ghost Rider. lol Thought you might get a kick out of that as much as I did.

    Talk to you later.

    Reply
  • April 8, 2010 at 12:12 am
    Permalink

    Jean Gray is my alter ego!

    Reply
  • April 8, 2010 at 10:11 am
    Permalink

    Wow! So often you speak about what I feel. You are good at expressing “our” feelings.

    I am the mother of two wonderful children, six and nine year old. My older child remembers playing at the park, daily walks, running, hide-and-seek and evenings cuddling with books or afternoons playing on the floor. My pregnancy with my youngest put me in the hospital for five months with my nerve-damaged-back putting me in constant labor. My youngest rarely has seen me sit on the floor (because I can’t get back up); he thought it odd that I actually ran about five feet the other day to catch him from falling; he often replies to not wanting to tidy up with “my back/hands/neck hurt like your’s so I can’t”. The only “physical” thing we do is that when he wants loving after a rough day at school, he’ll run to me and I’ll catch him up and spin. I don’t think I’ll be able to do that much longer but am loving it while I still can. I have lots of regrets about not sharing my life evenly between them or about the loss they each have experienced because of MY RA, but am grateful for the special relationship I have fostered with each and strive to make things as great, or at least as normal, as they can be. Having the constant pain isn’t so much the scary part as realizing that I am now aware that I am a single parent of two children under ten, and living with RA.

    Reply
  • Pingback: Most Tweeted Articles by arthritis Experts: MrTweet

  • April 14, 2010 at 2:07 pm
    Permalink

    God, I so know what you mean! I used to be “the go-to girl” Any problem big or small bring it to Alicia, she could solve them all! Paint your house, Carry heavy furniture, need a stove, i could find it. Family in need? No Christmas presents, thats fine, I’d just organize a drive anonomously and presents would magically appear on the porch Christmas eve. I was positivity personified! There was no mountain to big, no problem that could beat me. My husband was awed by my spirit. He always said that I lifted him up that he never believed in himself until I came into his life. I always tried to do the same thing with everyone that was around me. I WAS THE TOUGH GIRL. I didn’t need a man to help me do anything! I was self sufficiant! I never asked anyone for help! I could come up with marketing plans, package 200 packages, purchase everything my company needed, play counselor to my employees, keep my owner happy and fed, keep 46,000 customers happy all in an 8 hour day, then come home, figure out dinner, keep my autistic son happy, give my 14year old relationship advice,give hubby work advice, keep the family functioning,… AHHH those were the days. I used to be superwoman. On the same token, I am stubborn, fiercely protective of those I love, but not so protective of myself. AFTER BEING DIAGNOSED WITH RA- I feel like a shadow moving through the world… not quite seen. After leaving my job- (it grew quite hostile when I couldn’t do all of the things as before because of the RA pain and restrictions- I was told by the same people that i killed myself for and sacrificed for and helped that I wasn’t “pulling my weight”-) I struggle daily with my purpouse in this life. My children are in school. During the day since housework is quite difficult and fatigue is constant, I do little bits. I hide my depression and much of my sadness from my husband and children because I do not want to bring them down where I am. I know that I am not as bad off as others, but it still feels so unfair. I am 33 damn years old. I thought I had finally “found” my niche as far as a career! I never went to college, so I am very limited as far as what I can do for work! I do not want to sit around. I need to help my family…. contribute in some way but I’ll be damned if I can think of anything! I try to pull myself up, I encourage others… this helps… but Its hard to take your own medicine! I know I’m intelligent, I’m self educated, I read like a maniac, but the pain management doc will not allow me to take my ADD meds now, so I can’t even be focused! What job can I get when I can’t stay focused! NONE I know i’m not supposed to let my job define me… but what do I use to define me if not my job!? I feel like a blank canvas… SUCKS. Most of the time, I’m not even motivated to do my hair/makeup. Why bother? the minute I shower it seems to trigger my hot flashes! So I blow dry my hair apply the make-up and whammo bucket over head. I’m losing weight, but have been threatened by my rheummy that if it keeps happening that she will do a cancer scan. Whats that! Its sounds scary? She ran away after she said it. So I started eating crap.. chocolate, ice cream….still losing weight. cant’ win I see her next week. Not looking forward to it as I’ve lost weight, the drugs have not worked which means more scary drugs, and shes not a nice lady. YAY

    Reply
  • December 16, 2012 at 12:40 pm
    Permalink

    The part about relatives thinking that I take unnecessary medicines really hit home for me this morning. I’ve had RA for 7 years, correct diagnosis and treatment started 2 years ago – September 2010. I thought I had support from my husband. Not so. This morning I suggested getting a tiered rack to put my meds on and he angrily told me I take too much medicine. I asked him what should I do then? He told me to stop taking them. I then asked him if he had any idea what that would mean and he yelled “No – I really DON’T KNOW”. I didn’t continue the conversation. Right now I feel that I don’t have the support from my own husband and my RA is an inconvenience to him. I feel that he’s afraid he’ll end up having to take care of me if (or when) my RA gets worse.

    Reply
  • March 29, 2013 at 4:23 pm
    Permalink

    Just because some of our joints are disfigured, there are some people who look at us and think our brains are disfigured as well. They treat us with no respect whatsoever.

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *

“imaware™

    Welcome to RA Warrior!

    Welcome

    Thanks for visiting this unique site full of information and encouragement to fight Rheumatoid Disease. You'll find hope, humor, and a helpful online community. I'm Kelly & I'll be glad to show you around if you'll click right here.

    Advertisement

    View more gifts at Zazzle.

    Let's Pin Together!

Would You Like Free Email Updates?
Stay in touch with RA Warrior.
We respect your privacy. Your email address will never be shared.