I just posted this all over my social media pages yesterday because I love it! Having RA and an invisible illness, this statement really resonates with me. I often struggle with feeling “lazy” (and then guilty) just trying to make it through each day living with this exhausting disease. I’m NOT lazy, though. None of us are. We’re doing the best we can while living with constant, debilitating pain. That should be enough.
You know what, I do have some good news to share–I’m not totally consumed with whining and venting about this miserable flare-up that’s going on now (thank God for that, right?).
THE GOOD NEWS: I recently got assigned to write another article for Arthritis Self-Managementmagazine! The topic is “invisible illnesses.” I’ll be interviewing people who have different kinds of invisible illnesses, not just RA, and how having such a disease affects their lives–and the lives of others around them (family, friends, coworkers, employers, etc.). This “invisible illness” topic is something that’s really important to me not only because it personally affects my life in huge ways, but I know that so many other people are stuck in difficult situations because of it too.
How do you get people to understand what you’re going through when you look “normal” on the outside? How do you avoid being discriminated against because of your illness if you do decide to open up about it with others? How do you find a balance that works? Either people don’t take you and your illness seriously enough, or they judge you because of it. It’s a fine line and I think that many people don’t know how to deal with it–neither the person with the disease nor the caregiver/friend/partner/family member.
For the past 16 years, my default mode has mostly been keeping my mouth shut about my disease while trying to continue pushing forward, and living as normal a life as possible. The danger with this approach is it can lead to intense feelings of isolation and frustration, which I often do feel. I don’t know. Despite living with RA for so many years, I don’t have the answers or feel like I know what I’m doing most of the time. But I’m looking forward to talking with others who also understand what it’s like living with an invisible illness and hearing about their experiences. I’m also excited to be able to spread more awareness about this issue. There is a weird stigma and sense of taboo attached to talking about chronic illnesses, and especially chronic pain. It’s frightening and uncomfortable and awkward, but it’s a real problem. There are too many people out there whose pain and struggles are still invisible.
Living with a chronic invisible illness such as RA can be tough, for several reasons. Just because you might look “normal” and healthy on the outside, that doesn’t mean you aren’t actually dealing with a lot of pain on a daily basis–physically and emotionally. Sometimes family, friends, co-workers, bosses, and even doctors can be surprisingly insensitive and judgmental regarding this issue. Here’s a recent blog post I wrote for RheumatoidArthritis.net about the pain of living with an invisible illness: