waiting for my real life to begin

Awareness is a funny thing, one of the many things that changes once you’ve been diagnosed with a chronic illness. The healthy have the luxury of not needing to raise awareness or not needing to learn how to be an advocate or being able to stay quiet. But I think it goes deeper than that.

Even in the first few years of having psoriatic arthritis (and certainly for the years I had psoriasis — which I hadn’t even been told was anything other than a skin condition), I had no need, no desire to sound the alarm and marshal the troops to raise the public profile of PsA. I didn’t blog about it. I didn’t research it. I didn’t really talk about it. I certainly didn’t make any concessions for it, didn’t allow that things were going to be different for me now.

But raising awareness of my own illness in particular and chronic and invisible illness in general has become important to me, especially now that I’ve allowed myself to be angry and grieve and to slow down and (try to) be OK with not being the same girl or doing the same things I used to be and do. There are just so many misconceptions about chronic illness and arthritis, it just seems impossible to not add my small voice to the chorus to give good, real information. It’s important to stand up and to bust through the ignorance that allows people to think arthritis is a disease of the elderly and that being sick means looking sick and that I could get better if I wanted to.

I also think it’s important to help those who are struggling, who are newly diagnosed or who just want to feel they’re not alone. There are so many ways to do that: posting on message boards, chronic communities or on blogs; starting or participating in support groups; being willing to blog about what chronic illness looks like for me. But, I’m lucky in that the National Psoriasis Foundation has recently started up a really cool program: the Psoriasis One to One Mentoring Program. Mentors are linked up with those requesting assistance for peer support; we’re here to listen, to help (not to give medical advice, though!) and to just be there. We get it; we have psoriasis and/or psoriatic arthritis, too.

I think that’s kind of crucial. All the awareness-raising would be a little hollow if it didn’t allow us to reach out to one another. How can we expect others to care if we don’t care ourselves?

(Image via We Heart It.)

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7 thoughts on “waiting for my real life to begin

  1. For years, I just lived with my psoriasis. It wasn’t until I was diagnosed with PsA did I start to really pay attention, experience a wide range of emotions and start to work towards accepting my situation day by day. I’ve also found much of my support online. Thanks so much for pointing this program out.

  2. Liking what I read in your blog. I’m also a mentor and until you deal with a chronic illness you just don’t know. Dropped a face book friend today when she commented that she didnt appreciate me posting about the Walk for the Cure for Psoriasis and she hoped I’d hurry up and reach my goal because she didnt want to hear about it anymore.

    • Hey Terri:
      I’m glad you like it!

      As for that Facebook “friend,” it sounds like you’re better off without her. That’s rough!

  3. Pingback: climb the hill for a cure conference « lipstick, perfume and too many pills

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