Bringing RA Out of the Shadows

This week was, Rheumatoid Arthritis (or Rheumatoid Disease) awareness day (February 2).  I’ve been thinking about how little people know about RA and how it affects those of us who suffer from RA. I was first diagnosed when I was 14.  It is hard to believe that this was only 16 years ago and there was limited access to the knowledge that internet resources provides us nowadays.  At the time, the only knowledge my family and I had about arthritis was simply that it was something old people got.  So we were very confused to find out that not only were we wrong, but now it was something I’d have to live with for the rest of my life.  Thankfully, the librarians at my school did quite a bit of research and gave it to my mom so she could be better informed and I learned as much as I could from my doctor.  Since then, I’ve always made sure to explain RA to those around me even if it doesn’t affect them directly.  I believe that educating people about RA will bring more awareness and make the lives of those living with RA much easier.

Since my diagnosis, the internet has made it easier for everyone, including myself, to learn about RA and what it consists of.  However, not many people start researching a chronic condition if it doesn’t affectt them.  According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases, RA affects less than 1% of the population.  This small percentage isn’t nearly enough to achieve and create the type of awareness that other more well known and more publicized diseases have attanined.  Unlike ALS, Cancer, and Autism; it isn’t awlays easy to recognize when someone has RA.  Unless it has already damaged the patient’s joints enough to be visible to those around them.  Because of this, I‘ve had to deal with the classic “but you’re too young to have arthritis,” or “my grandma has that!” Most of the time I just explain that it’s not the same type of arthritis and that people can get RA since birth.  No age group is safe from autoimmune diseases.

I’ve had many unfortunate encounters with people who have thought I was exaggerating my pain, or making up that I had an illness that was “impossible” for someone as young as 14 to have.  It also doesn’t help that for the most part, this is an invisible illness.  So people can’t tell from looking at you that you have a legitimate medical condition.  I’ve been alienated by coworkers, called lazy by friends and family, been blocked in a handicap parking spot, and countless other hurtful encounters simply because there is not enough information out there for people to become fully educated on RA.

I believe that it is our duty to help inform people about what RA consists of.  Explaining it to those around you can be difficult because of the preconceived notions people have of arthritis in general.  I’ve found that it is always helpful to first explain the difference between RA and the arthritis your grandma might have and then explain in what ways it affects you in your everyday life.  This way people will not only understand what RA is doing to one‘s body, but also how it affects one‘s life.  Educating oneself and those around us on RA will not only make everyone’s lives easier, but will also bring more awareness and hopefully bring us closer to finding a cure.

National Institute of Arthritis and Musculoskeletal and Skin Diseases >>> http://www.niams.nih.gov/health_info/rheumatic_disease/

For information on RA awareness day (and image) >>> http://rheum4us.org/press-release-rheumatoid-arthritis-awareness-day/

Wheelchair Antics

I recently found out on a recent survey from rheumatoidarthritis.net, that about 30% of patients with Rheumatoid Arthritis feel embarrassed about having RA. I found this quite shocking since we have no control over being healthy or not. Furthermore it made me reflect about how RA has affected me. I asked myself if I’ve ever felt embarrassed about it. The only time in my life I’ve ever felt ashamed was in my early 20s. I was confined to a wheelchair for about a year and a half. I had accepted the fact that due to this affliction, a wheelchair would be the best method and mode for me to establish some sort of control and independence from it. I was not going to let RA get the best of me and limit my enjoyment of my life. I used that wheelchair to go and enjoy those moments that any person in their early 20s should experience. However, as with any type of medical mobility device, one immediately becomes the focus of attention. I wondered if people would feel the need to ask “what happened?” Or go out of their way to assist me or would they completely ignore me. These were just a few of many questions and thoughts that raced through my mind. The more I found myself dwelling on other’s thoughts and opinions, the more embarrassed I became.

When I was 22, I had no more cartilage in my knees, and after a while I could no longer walk, so I was in a wheelchair for quite some time after that. Wherever I went people stared at me. I don’t mind people staring, I’m a fun-loving person, and I don’t mind getting people’s attention when I’m trying to be funny or silly, but the looks on their faces was that of pity and I do not particularly like people taking pity on me. I had done so much more than most of those people had done by the time they were my age that I took offense to them feeling sorry for me. It was embarrassing for me to go out in public knowing everywhere I went people stared at me with pity. I know sometimes we all feel like everyone’s staring at us and it’s just our imagination, but I’m serious, we lived in a relatively small city where a young girl in a wheel chair is not too common a sight.

This went on for a while, but I couldn’t just stay locked up at home, so I had to face my fears, and just deal with it. So when my dad asked me if I wanted to go to lunch with him at a fast food joint that I really liked, I decided to go with him. The moment we went in, I could see everyone staring at me, and I’d stare back, but they would just look away and then look at me again when I stopped giving them the evil eye. It was quite exhausting. The whole time we were in the restaurant I kept thinking, if only these people knew I’m actually a very happy person who enjoys life they would stop looking at me with pity… and then it hit me… I had to make them see me the way I am and forget about the wheelchair.

I figured if they were going to stare anyway, might as well give them a reason for staring. As soon as we ordered our food, dad took me to our table. He asked what I wanted to drink, got up from the table to go get our drinks and the moment he started walking away I yelled at him “You better not ditch me here like you did last time!!” My poor dad!! The look on his face was priceless! He’s a very calm, serious man who doesn’t particularly like to cause scenes, he walked super fast back to the table and sat down with me giving me this look of “What in the world are you doing?” It was hilarious! I couldn’t stop laughing. I apologized but still couldn’t stop laughing, all of a sudden everyone in the restaurant was laughing too. My dad was able to go get us our drinks, and after all the laughter everyone stopped staring at me, and when they would look my way, there was not a hint of pity in their faces.

After that day, I’ve had many people look at me with pity again, but it doesn’t bother me anymore because I know who I am and all that I’ve accomplished and I’ve done that in spite of everything that RA has thrown my way. So people can feel however they’d like about me, it doesn’t affect who I am or what I think about myself. You can’t always make a scene in a public place to get people to see you the way you truly are, but you can always decide for yourself how you’re going to feel about people staring, or what people say or do around you.

I was able to get past my insecurities and was able to regain my independence and mobility.

Now, I’m never embarrassed for being sick or having certain limitations. Sometimes I feel irrationally guilty about it, but not really embarrassed. I’ve come to realize that embarrassment doesn’t just come from you, but from what YOU think or feel others think of you. Now, normally you can’t change how people (in my case, strangers) think or feel about you, but you can always change how you feel about it.