I spend a lot of time talking about arthritis and the impacts that it has on my life. I put my life out there on what I call my “public” social media and share the ins and outs of this crappy disease. On my “personal” social media, I do share, but not nearly as much.
I don’t want to be the person who is always complaining, or oversharing with the people who know me in real life. Many of my friends and family simply can’t relate—and I’m happy that they can’t! It means they’re healthy, they have no frame of reference, and they are not burdened with a disease that is really…crappy.
However, sometimes when things aren’t going well, I post updates. Because it’s easier to tell the story once and let people read it for themselves than to tell the story over and over. Because I do want to be honest about my life, even if it’s only slightly. (Note: “healthy friends,” if I talked about my disease every time it seriously interfered with my life, I wouldn’t talk about anything else).
Inevitably after I share that I’m in pain or struggling, someone will accuse me of trying to get attention. And up until this very night, in this very moment (at 1:30 in the morning on a bad night of pain), my response has always been, “I’m not trying to get attention, I’m trying to bring awareness.” Whether in my public life or my private life, it’s my larger mission to inform the world of what it is like for patients with chronic illness, especially arthritis.
But, on this very night, while in pain and struggling with a really awful flare. One month short of my thirtieth birthday, I want to come out of the closet as someone who IS trying to get attention.
I want to bring attention to the fact that, yes young pretty women can get arthritis too.
I want to bring attention that this disease is not the aches and pains that your grandma got from old age.
I want to bring attention to the fact that this disease wreaks havoc on the bodies of its victims.
I want to bring attention that it’s not just my joints that suffer.
I want to bring attention to the fact that I want another baby, but my body and immune system won’t cooperate.
I want to bring attention to the fact that I’m one of the lucky ones, because I do have one beautiful, healthy child.
I want to bring attention to the fact that inflammatory diseases KILL.
I want to bring attention to the fact that I will not stop advocating and telling my truth just because it makes you uncomfortable.
I want attention because I am strong enough to raise my voice for my community of fellow patients.
I want attention because the more I tell my story, the more people will be inclined to be more understanding and compassionate towards those with invisible disabilities.
I want attention because the more arthritis patients speak their truth, the more likely it is that important research will get funded.
I want attention because I am determined that I will see a cure for this disease in my lifetime.
So from now on, when someone wants to accuse me of just trying to get attention, my answer will be, “Damn strait, and I’m proud to be an attention-seeker.”