RArainbow

A resource blog for young women living with Arthritis


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What Rheumatoid awareness would mean to me

Hi everyone! Today’s post is part of a blog carnival being hosted by Kelly of RA Warrior. As some of you may know, February 2nd has been designated as Rheumatoid Awareness Day. Kelly asks the question, “What difference do you think it would make if Rheumatoid Disease were recognized for what it is by everyone…?I encourage all of you with sites to write an entry for this topic, so you can add your voice to the mix. Feel free to leave comments on this post too.

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I write today from the perspective of a 20-something year old woman, who has been living with Juvenile Rheumatoid Arthritis/Juvenile Idiopathic Arthritis for the past 22 years.

When I was diagnosed at age 7, absolutely no one in my circle knew about JRA. When I spoke about it with peers, teachers and other adults, no one knew what I was talking about. I can’t blame them, for I didn’t know about it either. Twenty-two years later, I am on treatment, I understand my illness and I’m able to educate others about it. I’ve been able to accomplish many of my goals and I continue to work hard toward my goals. But surprisingly, in our technology-saturated world where information about absolutely anything and anyone can make global headlines within seconds, it’s still the case that very few people I meet know about Rheumatoid Disease/Rheumatoid Arthritis/autoimmune arthritis. Even fewer are aware that babies, kids and teens can get autoimmune arthritis. Why is there such a gap and lack of awareness of autoimmune arthritis? What can we do to educate and break the common misconceptions?

Like so many with arthritis, when I tell people about my arthritis, I’m still met with variations of the following statements:
“Oh, yeah. Arthritis. I have it too. Let me show you my knee….”
“You are young! You don’t know what pain feels like!”
“Oh, my grandmother has that too.”
“Thank goodness I don’t have your disease!”
“I’m so glad I’m not sick like you. I hate pills. I wouldn’t be able to take them every single day.”
“Haha. Arthritis? You mean like what old people have?”

The statements which I listed above have been coming at me for the past twenty two years. It seems terrible, but it’s really taught me a lot in the art of patience and communicating with people 😉 . When people make comments like the ones I shared above, I use the opportunity to educate them about arthritis (if I have the energy that day 😦 ). I think these statements clearly show a greater need for understanding of this condition, and sensitivity overall.

Particularly, there is a need for persons to be aware that young people can indeed get chronic illnesses too. As a child growing up with arthritis, I was often dismissed by adults about the severity of this illness. Young children with arthritis are still learning to communicate and very likely will not have the ability to stand up for themselves and educate. And it’s for this reason that I really, really wish that the world knew more about autoimmune arthritis. A more aware world can help cushion and support those who are already in pain.

Rheumatoid awareness would mean a lot to me, as I wouldn’t have to go through the exhausting effort of explaining this illness to other people (losing a lot of precious spoons in the process). I wouldn’t have to engage in the tiring battle of words where I have to explain my wonky immune system to someone who insists that Tylenol can cure my pains. I wouldn’t have to worry about people laughing at me when I struggle to turn a doorknob or calling me weak when I can’t twist the bottle cap off my drink.

I don’t take pills because I enjoy taking them or find them delicious. I take them because if I don’t, I’ll be unable to move. Getting poked with needles is not fun to me by any means, but it’s a necessary part of life with chronic illness. We are doing what we have to do.

I recall this wonderful cartoon by RAGuy, in which he compared the responses that people had to various diseases. Like RAGuy, I don’t compare autoimmune arthritis to other illnesses – every case of illness is unique and I support and salute every person who has to endure ill health. But I do wish that autoimmune arthritis could garner the same respect and support as any other illness, instead of being seen as a very trivial condition.

I wish that people took the time to understand how this destructive condition impacts an individual’s life, instead of just thinking “I’m glad it isn’t me.” Perhaps people would be kinder if they genuinely understood that this condition brings extreme pain and joint destruction and fatigue – and that it could happen to anyone.

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Rheumatoid awareness/awareness of autoimmune illnesses is slow. But I encourage you all to keep talking and keep those conversations flowing. I encourage you to be your own advocate. In my last post, Talking about arthritis, I shared an incident where I discussed my arthritis with a co-worker and was met with true understanding and compassion. At times it is scary (and exhausting) to speak about arthritis, but I have learned that it is often necessary. And though there will be many people who simply don’t get it, there will also be others who do.

Stand up for yourself and educate others about your condition, especially if what they are saying seems insensitive to you. We want people to be kind and understanding, but no one can know what we’re going through unless we tell them, right?

(If you enjoyed this post and would like to keep up with future posts, subscribe through email, follow with your own WordPress blog or Like RARainbow on Facebook. Thanks!)

Readers, what would awareness mean to you? Share your thoughts in the comments below. Thanks!

Sending gentle hugs, 😉
Ms. Rainbow

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Talking about arthritis

coolerIt was lunch time. My co-worker and I grabbed a couple of juice drinks from the employee kitchen. The drinks weren’t cold, so he suggested getting some ice from the communal cooler which had been keeping an assortment of beverages chilled that morning. By the time we opened it, the cooler was almost emptied of its contents, save for the half-melted bits of ice which were floating in the cold water. As I examined it more closely, I noticed specks of dust and debris gently gliding through the water.

I was already fighting to endure a painful morning with JRA and I didn’t want to add the flu/cold to my list.

“I’m going to skip the ice,” I decided. “About fifty people put their hands in here already!”

My co-worker stared at me incredulously. “Oh gosh. Are you one of those obsessive germaphobe girls who needs everything to be clean? It’s just ice. A few germs aren’t going to hurt you.”

I laughed at his words and pondered what to tell him. I didn’t know him very well, but I wanted to tell him the truth – that if I got sick that day, it could take me at least a month to feel better again. That me getting sick could lead to days of not eating, of losing weight, flare-ups, hours of miserable pain, days glued to bed, sleepless nights, missed work, doctor visits and generally a super-crappy situation.

So I told him. I told him about my arthritis and I explained how my wonky immune system was not very effective at shielding me from germs. He didn’t laugh, or try to convince me that I had what his grandmother had. Instead, he listened and he said that he understood. Later that day he even came back to ask me some questions about my condition and how it affected me. We became closer after that.

And though we don’t work together anymore, we are still friends.

Speaking about arthritis when you’re a young person

Sometimes, it’s really hard to speak about our arthritis. Especially as young people, letting people know that we have arthritis can make us feel vulnerable. It opens the doors to potential negativity, loss of friends and misunderstanding. On the other hand, it can open doors to positivity, understanding, care and friendship too. In the story I related above, I am glad that I chose to let my co-worker know about my arthritis, as it strengthened our friendship. In a strange way, the reactions people have when you tell them about your condition reveals a lot about their characters. Surround yourself with supportive persons, not those who can’t accept what you have to deal with.

Having arthritis is nothing to be ashamed about – we are all dealing with our conditions as best as we can, and that is amazing to me. Telling people about your arthritis is, however, a personal decision and there are no rules to it – do what is best for you and what makes you feel comfortable. Some people are very open about it, while others are more private. It’s completely up to you to decide what feels right.

I loved this perspective from Sara Nash at HealthCentral.com, author of this article titled It’s My Prerogative: Who to Tell About My Rheumatoid Arthritis Diagnosis. Check out the accompanying comic strip too.

Readers, how do you deal with speaking about arthritis? Do you openly tell people about your arthritis, or do you prefer to speak about it on a need-to-know basis? Let me know in the comments. Thanks!

Hope you are all well!
Ms. Rainbow

 

[Image by Pixabay.com]


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Happy new year!

Happy new year everyone! I hope you all had a wonderful holiday season and wish you all the best for this new year 2014! Did any of you make any special new year’s resolutions? Share them with me! 😉

This year I hope to continue to be as healthy as I can with my exercise and nutrition. And to keep trying, trying, trying in everything I do!

I recently read this quote from the movie The curious case of Benjamin Button and wanted to share it with you guys:

“For what it’s worth: it’s never too late or, in my case, too early to be whoever you want to be. There’s no time limit, stop whenever you want. You can change or stay the same, there are no rules to this thing. We can make the best or the worst of it. I hope you make the best of it. And I hope you see things that startle you. I hope you feel things you never felt before. I hope you meet people with a different point of view. I hope you live a life you’re proud of. If you find that you’re not, I hope you have the strength to start all over again.”

I love it! Some great words to remember as we start a brand new year.

I also want to share this amazing video by Pip and Nathan Parrett (for those of you who follow The Voice, both guys were on Season 2). I was actually flaring a couple nights ago and couldn’t fall asleep ’cause the pain was too much. I put on this video and it really entertained me and helped my body to relax. Thank goodness for music…really! And as we start the new year, I want to say thank you guys for all your support, for your kind comments, for your suggestions, advice and for your blog posts. I love learning together with all of you. You are all amazing! 🙂

Wishing all of you an amazing, happy, productive and manageable pain/pain-free year,
Ms. Rainbow