invisible

Warning: this post is about to get REALLY personal. But it needed to be written, so here it is.

A few days ago, my friend Alyssa (who has previously written in this blog) posted in her own blog about her fear that publicly revealing her struggle with Rheumatoid Arthritis would invite future employers’ (and any number of people’s) discrimination against her. “I’m tired of hiding who I am,” she wrote. “I’ve accepted who I am, and I just hope that there are enough good people in this world who can accept me too.” I must say, I’ve always admired Alyssa’s honesty and openness when it comes to her writing. Telling the world about her arthritis is certainly brave, but I can’t imagine it would be easy. And while I don’t believe that there should be a hierarchy of disabilities, I do think that invisible disabilities sit at a higher tier in terms of how hard it is to deal with them both physically and emotionally.

If you look at Alyssa and me side by side, you’d be quick to notice my limb difference before you detect the slightest limp in her gait during the worst of flare-ups. Because it’s so visible, I’d been forced to come to terms with my disability long before I was even thinking about pursuing my dream career (or any job, really). To me, my arm proved to be more of a self esteem issue than a functionality one; I never had any real limitations (Granted, I’ve never been able to master the monkey bars. But that’s not exactly a skill I would list in my resume anyway). With my perceived handicap in the spotlight, though, I’ve managed to show that I am capable and that my arm is really no big deal. But when someone has a problem or challenge that’s not readily apparent, said issue becomes a whole lot bigger.

While I stand in pretty good physical shape, I know what it’s like to try to hide something too scary and shameful for other people to know. A couple years ago, I was diagnosed with an anxiety disorder. I suffer from occasional panic attacks, and I worry constantly and excessively over things that A) are almost always irrational and B) I can’t control anyway. This anxiety, in addition to bouts of depression and an eating disorder that has followed me around for the past 8 years, reached its worst during my junior year of college. I was taking honors classes, working a part-time job as a writing tutor, and interning at the Oxygen Network when it felt like my world was falling apart. I was so afraid that someone would consider me less than capable because of the panic attacks, which only motivated me to work harder. I finished that year off with straight-A’s and I now work at Oxygen, so I guess you can see how I wouldn’t necessarily consider my anxiety a “disability” (though I take issue with the vague term “disability” for a variety of reasons, but let’s save that for another time). In any case, I’ve never been one to let obstacles become a deterrent to my dreams. And I’m not the only one who has felt this way, being that several celebrities have revealed their own struggles with mental illness in recent months.

Renoir’s Self-Portrait (1910)

Disney star Demi Lovato bravely opened up a while back about her battle with an eating disorder, a cutting problem, and bipolar disorder. In a recent magazine interview, actress Emma Stone admitted to having frequent panic attacks. And Amanda Seyfried has even taken medication for her anxiety during an interview. What these three young women have in common is success. They have each turned their trials into triumphs, and they continue to land great jobs in television and film. Of course, success is not exclusive to those who have overcome mental health issues. Rheumatoid arthritis didn’t stop Lucille Ball from becoming a beloved actress and comedienne, nor did it deter Pierre-Auguste Renoir from painting masterpieces even when he could barely hold his paintbrush.

My point is this: disability, whether obvious or invisible, should not be a source of shame and fear. Rather, your success and accomplishments should be a testament to your strength and adaptability. And those two qualities are pretty impressive in anyone, regardless of specific ability or lack thereof.

 

Peace,

Caitlin Michelle

 

 (All images in this post were found on Google and are not my own.)
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her side

You’ve heard his side, now read Alyssa’s story:

Hi all 🙂 I’m Alyssa, I’m 21 years old and I’m a student, a writer, and a children’s author (among other things). When Cait first suggested that Anthony and I guest post on her blog, I wasn’t exactly sure how I wanted to go about writing it. I think it would be appropriate to start by mentioning my own problems and fears, since I obviously know myself best. Rheumatoid Arthritis (also known as RA) is an autoimmune disease. It affects mainly the joints, making them stiff, swollen, and painful. It also causes fatigue and damage to the internal organs. It is not contagious like HIV. No one really knows why people have RA, but you can be genetically predisposed to it. I was diagnosed in November of 2011, but I’ve had the symptoms for many years. When I have a flare (which is the period when the disease is most active) I am unable to type, usually can’t get out of bed, and have the ability to sleep for 18+ hours. Activities that I used to take for granted (like brushing my hair) can be almost impossible for me during this time. But the point of this post isn’t to talk about my disease in detail. You can visit my blog for that. Despite my troubles, I try to be my old self as much as possible maintain a mostly positive attitude (though we all have our bad days). Sure, I had to give up some stuff (no more guitar playing for me!), but who doesn’t have to sacrifice?

Having RA made me really apprehensive about dating. My ex and I were already together when I was diagnosed, so I didn’t feel the pressure to try and be “normal.” But then we broke up, I realized that there are going to be men out there who can’t accept me for my “disease.” I’ve had guys tell me before that they were only interested in dating healthy women, and an overweight, sick woman such as myself would never cut it. I was so worried that I’d never find anyone  who would want to be with me. What guy wants to date a girl that could potentially be a burden?

I started talking to Anthony online in August, and I was worried that it was going to be the same deal with him. We’d talk, we’d both be interested, I’d feel comfortable enough to tell him about RA, and he’d never talk to me again. So when I told him about my RA, I was in for a surprise that a) he didn’t reject me and b) he told me he had CP and HIV! I will admit that I was both relieved and apprehensive then. He told me that CP affected his speech. Would I be able to understand him? Would I make a fool of myself if I couldn’t? Would I insult him if I asked him to repeat something? I didn’t really know much about the condition, and that worried me. Then there was the HIV part. I like to think that I’ve been well educated about the disease. But of course, I still had my concerns. My immune system is already compromised, and I don’t even want to try to imagine what having HIV on top of that would mean. I was worried that having to be careful about everything we did together (and I’m not just talking about sex here) would mean that we would be spending less time enjoying each other. This prompted hours of research. I will also admit that I was worried about what other people would say about us. I knew friends and family members would pull me aside and tell me that I was taking a huge, unnecessary risk by being with Anthony. They would be concerned about me having a normal (there’s that word again) and happy life. The part I really didn’t want to hear was “are you sure you’re just not settling?” No, I’m not. I found a guy who can accept me for who I am. My life is not normal as it is, so why let this stop me? And I am happy. Fortunately, my mom and sister love him, and my friends think we’re a cute couple. Of course, it took meeting him for their concerns to go away.

Anthony and I have been together about a month now. Instead of worrying about what our diseases prevent us from doing, we try to find a way to laugh about them. We joke about our compromised immune systems and the fact that we’ve been passing the same cold back and forth since we’ve gotten together. When I’m feeling too tired or sick to go out and do things, he’s perfectly content coming over to my house and spending the day in front of the TV watching old cartoons and eating Chinese food, and giving me the occasional foot or back massage. When we’re out in public, he’ll grab my hand and start rubbing my sore, stiff fingers to try and loosen them up.

So we can’t kiss like other couples. So we can’t play the guitar together. But I still try to take care of him to the best of my ability. I made dinner for him for the first time, and I’d say I did a good job. I need to accept that I won’t always be able to take care of him, and that I will need to be taken care of every once in awhile. I think Anthony already has that concept down. So as long as we’re both happy in the relationship, why should anything else matter?

– Alyssa Pierce

Follow Alyssa’s blog My Battle with RA and visit her (and her books!) at http://AlyssaPierce.com

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