Tag Archives: discrimination

I’m Living a Label

Not much has changed since the last time you guys heard from me. I’m still in remission and relatively pain-free except on rainy days.

I’ve been seeing lots of new doctors lately for reasons not caused by my autoimmune disease (thankfully and surprisingly). The questions always start out the same: what medical conditions do you have? What medications are you taking?

My response is usually, “I have Rheumatoid Arthritis, but I’ve been taken off my medication because I’m in remission and symptom-free.” Normally, that’s a good enough answer. Some doctors might ask me how long I’ve been in remission for, which I think is a valid question.

That wasn’t a good enough answer for the last specialist I saw. “You know, doctors give symptoms labels just for insurance purposes. If you really had arthritis, you’d be in pain all the time. There’s no such thing as remission for that disease,” she said. She said something similar about a more recent medical diagnosis that I’ve been given.

Huh?

Okay, I get it. You don’t want your patients to have self-fulfilled prophecies where they use the disease as an excuse for stuff. It does happen. But clearly lady, you don’t know me.

Personally, I think this is a dangerous game this “professional” is playing. For me, a diagnosis was a relief. I finally had a name for the suffering I’d been experiencing for quite a few years. In that sense, yes, I’m labeling.

But I’m labeling the condition. Not me. I don’t walk up to people and introduce myself like, “Oh hey! I’m Alyssa and I have RA.” Mostly because I’m an antisocial asshole and won’t walk up to you at all.

I also don’t think it’s fair for someone who isn’t personally experiencing what I’m feeling to tell me that my disease is not real or valid. Especially when said person is not a Rheumatologist. This woman hasn’t seen me at my worst, on the days where I was completely bedridden from the pain. I may not be suffering now, but my blood work has always said otherwise. There’s actually comfort in having a name for the monster you’re battling. It takes out the unknown that eats away at your psyche.

So, Lady-that-is-Having-Her-Credentials-Doubted-By-This-Person, I’m gonna stick with my labels, thank you very much. Until you can guarantee that I will never be sick or in pain ever again, or prove that I never had RA in the first place, I’m going to keep telling doctors that I have RA that’s lying dormant for the time being.

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Hobby Lobby vs. Rheumatoid Arthritis

While I try not to get political in my blog postings, yesterday’s Supreme Court decision in favor of Hobby Lobby is too big a deal to not talk about here. If you have no idea what I’m talking about, check out this article from Mashable.

The ruling is appalling. Not only did some men decide that it was okay to take away women’s reproductive rights in the name of religion, but lots women now have something extra to worry about: the consequences that come from getting pregnant while having a serious disease. Okay, sure, women can still go buy birth control on their own. It just wouldn’t be covered by insurance. But birth control is expensive, especially if you’re already struggling to afford the medications necessary to keep you alive.

Most people know that cancer patients need to come off their chemo drugs before trying to get pregnant. What most people don’t know is that women with autoimmune diseases like Rheumatoid Arthritis are often prescribed those same chemo drugs to combat their immune systems. Drugs like Methotrexate are poisons that often lead to miscarriage or serious birth defects.

I’m lucky. My doctor has decided that I don’t need aggressive treatment for my RA yet. He’s purposely keeping me on what he considers “baby friendly” medication for as long as possible. Most women don’t have that option. Women with aggressive autoimmune diseases have to plan their pregnancies as much as two years in advance. They need to quit their medications and allow the drug to work its way out of their systems before they can even try to conceive, which can take months or years.

I can’t imagine how painful this ruling is for these women. I can’t imagine being told that I have no choice but to risk suffering through the heartache that follows a miscarriage that would have been avoided if certain forms of birth control had been available.

I have RA, I’m engaged, and I’m looking for a full time job. Do I seriously need to limit my job options because my future boss may have some ridiculous vendetta against my reproductive health and the choices I make with my future husband? Anyone else find it highly ironic that Hobby Lobby’s owners claim they won’t support abortifacients (chemical abortions), yet they just made it more possible to have unwanted spontaneous abortions via chemo drugs? Yeah, a spontaneous abortion (miscarriage) is not the same as an abortion. I get that and I’m not trying to start an argument over which is worse.

My point is that no one should have any right to dictate the decisions I make based on their beliefs. Religion is something that is supposed to be personal. I’d never try to enforce my beliefs on anyone, and I have no respect for people or companies trying to push me to follow their supposed morals. Where is the morality in putting a couple through emotional and physical trauma?

If this whole argument is over “religious freedom,” then where the hell is mine?

 

 


To Blog or Not To Blog?

So I don’t know if I ever mentioned this, but I started this blog at the urging of my friend Caitlin. She has a blog called Stream of Caitlinness, dedicated to discussions of physical disabilities and what it’s like to be a one-armed girl. Caitlin recently asked Anthony and me to guest post and talk about what it’s like to be a couple with disabilities. Of course, the both of us were excited to share our experiences, and we were honored that Cait cared enough to want to give us that exposure. Anthony and I each had a separate blog entry, giving our individual sides of the story.

For the most part, our posts received positive feedback. Friends told us that we had them crying, strangers told us they were rooting for our relationship. A very popular, well-known blogger even linked my post to her page, saying that she was inspired by my story. Cait was getting over 150 page views a day, and people were tweeting and sharing on Facebook like crazy. The response was overwhelming, exciting, and slightly flattering, since I didn’t think anyone would care too much. Of course, the one person I thought would support me and my writing didn’t.

Instead, Mom freaked out on me and demanded that the posts be removed, and that I stop using this blog. Her reasoning is that now that I’ve made it publicly known that I have a “disability,” no professional company will be willing to hire me. No one will give me life or medical insurance. There was a whole list of reasons. We’ve been fighting on and off about this. It got me pretty depressed. For awhile, I was actually going to take it down. I removed the posts from my Facebook wall. Anthony had posted about the blog too, so I asked him if he would take them down as well.

Of course, he didn’t want to cooperate with me. He gave me advice instead:”Why are you going to take down something that can help people? You’re a writer, and you need to write. And you need to write what YOU want to, not what someone tells you to. No, I’m not letting you take this down.”

And so I realized that he’s right. I’m already not eligible for life insurance (already tried applying, first question they ask you is whether or not you have an autoimmune disease) and well, I won’t get into the health insurance debate. So, Mom’s point is invalid in that regard. But I also realized that I don’t particularly care that companies know that I have RA. I’m not going to go to an interview and say, “Hey, I’ve got RA,” but I don’t care if they snoop around on the Internet and come across this blog or my post on Caitlin’s. If a company chooses not to hire me because I’m not like everyone else, then that’s not a company I want to work for anyway. I’ll let my resume speak for me. I mean, people with worse and more noticeable disabilities are able to find jobs, so why wouldn’t that be the same case for me? Some people may call me a stupid, naive 21 year old. But I’m tired of hiding who I am and pretending to be something I’m not. I’ve accepted who I am, and I just hope that there are enough good people in this world who can accept me too.

So that’s a long-winded way of saying that I’m sticking around. And that I’ll be more diligent at blogging than ever. And hopefully, I’ll help someone else in the process.

If your interested in reading the guest blog posts Anthony and I did, check them out below:

Anthony’s post

My post


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