For a week or so I’ve been thinking about a blog loosely titled, “Top Five Things They Don’t Tell You About RA.” My thinking was that people, particularly those who are newly diagnosed, get overwhelmed with all the negative things that come up when you research the disease. You know what I’m talking about, particularly those statistics about disability.
Part of the impetus to write such a post is the lack of general knowledge of RA. It’s not exactly like some other chronic diseases. For example, I have diabetes on both sides of my family and I’ve seen how people with the disease can manage it and lead full, rewarding lives. Now that I’ve lived with RA for more than five years, I thought it would be good to put a bit of similar perspective in the overall mosaic of RA information out there.
The first point I was going to include was fine — something along the lines of “It’s a diagnosis, not a prison sentence.” The point being that while the statistics are concerning, there are large percentages of people with RA who (like my diabetic friends) manage the disease and live life well, including those who go into remission.
But then I ran into trouble because I kept coming up with negative things I didn’t know when I started this journey. For example, when I was younger I swore I could never be a drug addict because I would never, ever be able to inject myself. Says she who has been giving herself injections of biologic medications for the last five years. And for all of us needle-phobes, there is also the ongoing onslaught of lab tests, flu and pneumonia shots, etc. And while they don’t necessarily tell you that sometimes you’ll feel like a pin cushion, the fact is, sometimes you do.
I was also going to talk about how empowered you must be in managing the disease and that not all rheumatologists are created equal. If you aren’t able to communicate with your doctor, then you need to find one who will listen. However, pointing out that not all rheumatologists care and that there is a decided gulf between current medical thinking and the patient experience, would also be pretty scary to someone who is newly diagnosed. (It’s certainly scary for me!)
While the original post isn’t going to see the light of day (or cyberspace), what happened is that I’ve come to the conclusion that it is all about the patients and how they approach the disease. You have to have the resiliency to make it through the bad times (and there will be those) and the mental attitude to make the best possible outcome that you can. That means not only taking care of yourself, but (if possible) not letting your disease overwhelm your life. It’s true that there are people who are in severe pain and who are disabled and, for those, that’s not an option. But for the rest of us, keeping a firm eye on the life we want to live gives us both the hope and the determination to do so.
So for those of you who are recently diagnosed (and even those “old timers” like me), there will be a lot of things you will learn as you deal with the disease. Not all of them will be pleasant. You will no doubt build a lot of inner strength as you move forward. But know that there are a lot of us who are also making that journey, so there is a world of wisdom, support, and even comfort available to you.
I hope whatever top five things happen in your life today are wonderful.
Thanks for checking in.