Everyone in my life knows that I’m sick. Everyone. It’s not one of those well-known illnesses that people shrug off, like diabetes, but arthritis is still fairly common, especially Rheumatoid Arthritis. 1.3 million Americans have Rheumatoid Arthritis, and women are 2.5 times more likely to get it than men. Apparently it’s rare for women to develop symptoms earlier in life and the disease usually sets in between ages of 40 and 60. Not to say it doesn’t happen to women who are younger…. RA can happen at any age…. clearly.
And so far there’s no cure. Sure there are tons of “treatments” and drugs to help slow the affects of the disease, even some that prevent further damage, but no cure. And like other diseases, there are different levels of RA. Not every patient is on the same pain level, or are taking the same medications. I’m often told by people that they know someone who has RA and most of the time “they are fine”. Well, that’s great for your friend. I’m glad they aren’t suffering like some of us do. But to be clear your friend and I are not the same.
It’s like someone saying “I have cancer”, and being told by another person, “Oh, I have it too, we’re the same”. There are so many types of cancer and within those types there are different stages, just like with RA. So, it can be pretty insulting to hear constantly that people have ‘heard’ of my disease and know exactly what that means. To clarify, you may know the definition of Rheumatoid Arthritis, but that doesn’t mean you know what goes on in my body.
Truth be told, I’m really exhausted constantly defending my disease to others. Yes, defending is the word I want to use. I feel like I am continually justifying my illness to others because they either don’t believe me that RA is as serious as it is, or they think I’m exaggerating. Mostly it’s because they’ve known someone with the disease that have either had a much less aggressive strain, or they don’t truly understand how bad RA can get. Let me be clear when I say that RA can kill you. Thousands die every year from Rheumatoid Arthritis. Some die through infections that were contracted through our severely weakened immune systems, others from excruciating pain and immobility caused by our disability. The point is that Rheumatoid Arthritis is a very serious condition that should not be taken lightly.
The reason I have to defend my disease so often I feel is because people only see me on my good days. I don’t like friends and family seeing me when I’m very ill, so you won’t often see pictures of me on social media when I’m like that. I only post when I feel good and feel that I look good. I don’t want people to see me when I’m in severe pain and pale and wishing the pain would make me pass out so I don’t have to deal with it. But now I’m thinking I should post on those days because people seem to think I’m doing just fine. In fact the other day when I was telling a family member that I’d had a good day and was able to get out of bed and get some exercise they told me I should start working again in that case. Ok, just because I had one good day where my pain was bearable within a sea of horrible days where I felt like death, does not mean I should rush back to work. Can’t you just be happy with the fact that I had a good day for once? And deal with the reality that I may not go back to work for several years? My reality is that I choose to share the good news only with people because no one wants to hear if my day/week/month sucked. But because of this I now have to defend the fact that yes I am legitimately ill. Still.
So I guess I’ll be posting more “real life” pics and updates from now on. Apparently posting that I’m having a good day only makes people think I’ve miraculously found remission. It’s a great idea I do admit. But I’m sorry, it’s very much not my reality. From now on, you will see my reality much more. You have been warned.