It’s hard for people who know me to believe I’m chronically ill. Yep, I said it… I’m chronically ill. I live every one of my days with a disease and I will continue doing so every day for the rest of my life, unless by some miracle, a cure is found. Just like normal people; I go to work, I learn new things, I cook, I clean, I go to the gym and I spend time with my loved ones. If I must say so myself… I do a damn good job hiding who I really am. I am a sick girl.
To be honest, there are moments when I even forget I’m sick. There are actually split seconds when I’m overwhelmed with some emotion other than pain — and for an instant, I actually feel like a normal person again. During these brief moments, I feel like the person I was six years ago before this disease took over every inch of my body. Those were the good old days. I was naive and unappreciative of all the things normal people do… I didn’t realize that one day soon I’d miss being able to button my clothing, open jars, brush my teeth and blow dry my hair effortlessly. I didn’t know that one day I might wake up not being able to move, let alone get out of bed. And I sure as hell didn’t know it was possible to be this tired all the time. Even after all the sleep I’ve been getting.
It’s tough. It’s tough knowing that at 29 years old, I can’t do everything I want to anymore. I have to set limits for myself. I have to choose my battles and prioritize the things I want to do. I’ve always just “done it all” without thinking twice. Not anymore.
It’s especially tough being a sick girl who doesn’t look sick. Or maybe I should rephrase that. It’s good that I don’t look sick because I don’t want anyone’s pity. But it would be nice to get a seat on the subway once in a while like when my hips are burning and aching. It’d be nice to take the elevator with all the moms and strollers at the mall because I can barely lift my legs enough to walk. But it’s somewhat impossible to do these things without getting an occasional stink face from some judgemental frump. You know the look… It goes something like “what’s that 20-something girl doing sitting down? She should give up her seat to the older man”. I could just scream at those people who dish out their disapproving looks, “I’m a SICK GIRL”, I’d tell them. But instead, I just shrug, stand up and let the healthy 50-year-old man sit down in my place. Does this mean I’m hiding? Or do I simply not want to deal with the hassle of explaining my situation?
Despite all the angst and frustration that stems from living with a chronic illness, I try my hardest to stay as upbeat as possible. And at the end of the day, it truly is amazing what forcing yourself to smile can do for your day. So… Maybe it’s not hiding after all. Maybe pretending I’m not a sick girl is just my way of coping. How do you cope with being chronically ill?
Chronic Mum 
Well said Katie. One of the most challenging things about RA is that we look just fine to most people and can still be in a lot of pain. I hope you find a biologic that works well for you soon. I’ve been in a drug study and once I stopped receiving the placebo, it was amazing. I am used to calling it Golimumab, but it’s now on the market as Symponi. Remicade stopped working for me.
As for forcing yourself to smile…I have this very quote on the wall in my house: Sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy. – Thich Nhat Hanh
Reframing also does wonders for me. When I feel sorry for myself, I try to remember to be thankful for all of the wonderful things in my life: supportive family and friends, youth (wait – 36 is still young right??), a job I love (I actually just got laid off, but I’m optimisic things will turn around), a phenomenal rheumatologist, and having a family that taught me to count my blessings. Plus, one of the biggest ones…being born in a time when we aren’t just told to take an aspirin like my grandmother and great-great grandmother had to when dealing with and becoming crippled with RA. Sorry, but a Bayer couldn’t begin to touch the pain RA can wreak on a body.
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Hi Katie,
There is a cure if you’re willing to step outside the conventional establishment.
Please check out our site, it’s worked for many people to improve their quality of life. We also run http://arthritishealingbook.com/index3.html as a sales page from My Healing Kitchen.
It takes commitment, but the rewards are more than worth it.
Get your life back!
All the best,
Rich
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Oh, you just described so many of my feelings perfectly! I must say I am just like you, trying to hide my sickness. I am only 39 and get the same looks when I use the handicap parking at Wal-Mart. My ankles and feet are ravaged by RA making it almost impossible to walk. My husband encourages me to use the motorized carts and I am just too embarressed to do so as I live in a small town and see someone I know everywhere I go. I do not want anyone’s sympathy and do not want to explain my situation. Secretly I want to move to a place where no one knows me and I can live more comfortably as the cripple I have become. I remain here though just trying to hide my sickness.
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At least I am in my early 50s so that it does not appear all that strange to be parking in the disabled bay or needing to sit down. I am sorry that you have this body destroying disease at such a young age. I am on boilogics that are working but I still find the tiredness, depression and nausea hard to live with. It is not as if we can look to the future for relief! My comfort is the knowledge that we are not only a body, we are also spirit and that is a part of us that cannot be destroyed by any illness or by any other person. Learn to smile at those who would judge, for you are not in their shoes (thankfully)! You are someone who is having to find her own strengths and you are able to express yourself very literately!
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I can relate to what you’re saying about “hiding” it. I’m so glad I’m not the only one who feels this way. It is a strange paradox that I don’t want attention or pity but sometimes when I’m physically pushed to my limit I feel like screaming “If you only knew the amount of effort it takes for me to walk down the hallway looking normal, you would not ask me to sit in that hard plastic chair for a 45 minute meeting!”
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I have osteoarthritis as well fibromyalgia and osteoporosis and interstitial cystitis. but I look just great!
Isn’t it ironic.
My sympathy to you all who suffer in silence
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katie…..wow. you said it better than i’ve ever been able to. i’ve been dealing with chronic pain for a long time, but more recently it’s become extremely emotional for me knowing that people just don’t understand. because i don’t look sick. more specifically family. the disapproving look or tone in their voice says it all. i’m treated almost as if i’m making it all up. 😦 my husband is asked why he stays. i’m in constant fear of being abandoned because of my illness.
after reading this post i thought you might like to read something that helped me explain chronic illness better to those closest to me. you may have already heard of it, but in case you haven’t it’s truly a gem.
it’s called “The Spoon Theory” found via the website butyoudontlooksick.com http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
anywho. i’m bookmarking you as a favorite now. i think you’ll be an amazing resource in the days ahead. they finally tested my rheumatoid factor and got results showing it’s elevated. i’m on my way to a rheumatologist feb 23.
i’m 33 years old…..and have had chronic pain since the age of 19.
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I’m so sorry about your illness I hope they can find a cure I am so very sorry once again about these unfortunate events in life, but what I have to ask you has nothing to do with your illness is that mean? I am 12 years old and I am writing a book about a 15 year old girl named Mollie who is lost and her best friend (my character) cannot find her so I was woundering if I would ever be so fortunate to publish my book if I could use this picture because it was the best one I could find. So if you are not okay with it that would be okay I would just have to find another but this is the only picture that stuck out for me. So would it be alright if I used this picture as the cover of my book? If you have any questions please contact me at my email at demi472@yahoo.com or you can contact my parents at rickandjen2@yahoo.com.
Sincerely,
Davika M.
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Hi Davika,
You can certainly use the photo for your book. Enjoy!
Cheers,
Katie
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Hi Katie,
I appreciated reading this post and your perspective of being diagnosed so young with RA. I can only imagine the prejudice you must receive by the ignorant. Your positive example of strength is to be commended.
I am recently diagnosed last December, and have been living with Severe RA for a little over a year. Thanks for visiting my site — I hope you will stop by again soon!
Congratulations on your MBA and your advertising career. We have similar career paths.
I wish you well on your journey to thrive with RA.
🙂
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Wow Katie, I really relate to this post. I was diagnosed as a child and I’m now in my late 20s (have had it for over 20 years). Like you, I also give up my chair if I think someone is in pain, even if I’m in pain too. It’s funny we do that, but it must be ’cause we can empathise with a painful body.
It’s difficult living with an invisible disease, but at the same time I am glad I don’t look as sick and tired as I feel inside. My coping mechanism, like so many with chronic disease, has been to smile my way through it. It would take too much energy to complain about being in pain all the time, so I guess we learn to push through it. Wishing you all the best with your treatments.
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Hi Lily – Thanks for reaching out! Keep that smile going. Positive energy can only help combat all the uckiness we are feeling.
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