Monday, April 1, 2013

WEGO Health Activist Writers Challenge Day 1

To kick off the WEGO health's activist challenge the first question were asked was, "why we started writing about our health and what got us started?"

My health has always been a personal thing to me, I don't like to talk about it. I don't like the attention being on me. I was diagnosed with Rheumatoid Arthritis 25 years ago, for 25 years I sat back quietly watched, listened, and put up with whatever was thrown at me. People either out of their own ignorance, or maybe they just didn't care would make comments like "oh it's just arthritis" "it could be worse, you could have a fatal disease." Really? Living in severe pain everyday barely able to function, so tired you can't think, (but can't sleep.) You lose the ability to concentrate, you're too weak to take a shower. Let's not forget heart involvement, kidney involvement, eye damage, joints replacements, drugs used for Chemotherapy. Oh yes, having Autoimmune Arthritis/Diseases is so much better than having a fatal disease. I hope you can detect my sarcasm. 

One day I went searching for people like me who would understand, and I came across several sites, I started reading them all. I was amazed at the bravery of these people. This past year I realized I was doing a disservice to not only myself but to others with RA, Lupus, Sjogren's Raynauds or anyone else dealing with Autoimmune Arthritis/Disease. Keeping it to myself isn't helping, the media gets it wrong, family, friends, don't understand, people think it's "just arthritis,"and brush you off.  When your illness keeps you home from events people get offended, make you feel guilty and instead of checking to see what they can do to help, you stop getting invited to places and people stop visiting you or calling to see how you're doing until you're alone with the few who do get it. The only time they do call is when they need something from you or expect you to show up at a moment's notice. I can't even remember, outside of the people closest to me the last time someone asked me "how are you doing" and waited to hear the answer.

I can't sit back and longer and get mad at when the people who should be educating the public aren't doing their job. So I added myself to the list of patients blogging talking about Autoimmune Arthritis/Diseases. The more of us who band together the more our voices will be heard. What better platform than WEGO health. A wonderful site that lets the patients voice be heard.  It's my first year blogging and joining the WEGO health challenge. I hope reading this opens up your mind and when someone tells you they have "arthritis" you take the time to listen to them.

One final note, Since the Rheumatoid Arthritis diagnosis Sjogren's Syndrome, Raynauds and recently a diagnosis of Lupus have been added. Not many people know, but then again who asks?



6 comments:

  1. I have a dear friend with Lupus and she has taken on a mission to educate as many people as possible about lupus...I have learned so much from her!!

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  2. I'm sorry to hear your friend has Lupus. I'm so glad she has a friend like you :)

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  3. great post, looking forward to following you through these next 30 days and longer!

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    1. Thanks Carrie, I appreciate it, I've been following you for a while now and enjoying all of your posts. I'm glad you're here! I hope you're having a great week.

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  4. I hate the "it could be worse, it cold be fatal" comment. I totally acknowledge that I count myself very lucky to not have a cancer or another terminal illness diagnosis. I am incredibly thankful for that but that does not mean that my non-terminal illness and pain are any less real. Living day in and day out with debilitating chronic pain is something that I wouldn't wish on anyone. It affects all aspects of your life - not just physically, but spiritually, emotionally, and mentally. I look forward to reading your posts over the next 30 days!

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    1. Very well said, I agree with you 100%
      I would never discount what another person is going through, or question the amount of pain they are in. For some reason people think if you're not going to die then you must not be that bad. I hope with all of us raising awareness, including some doctors, that this will change.

      Thanks for leaving a comment, I'm sorry you're dealing with pain. I would follow you but I don't know how to reply to you. I hope you have a great week with low pain levels.

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