Why wonder about 10 things I wish I knew 10 years ago?
January was my rheumaversary. Yes that’s a new word. But it’s pretty clear what it means. Over the past few months I’ve been pondering what it means to live a decade with unrelenting rheumatoid disease. What does my future hold? There is so much I wish I knew 10 years ago. Maybe I can help my future self by thinking through what I’ve learned so far. And maybe I can help another patient. I’ll try to boil this down to 10 things I wish I knew 10 years ago about Rheumatoid Arthritis (RA) / Rheumatoid Disease (RD). But I’m sure your comments will be a great help to readers too.
10 things I wish I knew 10 years ago
1. I am not alone. I wish I’d known that so many people have RD. And how much it helps to be in touch with a community like RAW. When I began to realize it, I dreamt of RA Warrior, started working hard, and never looked back. We don’t need to all be alike or to all agree. We just need to know we are not alone.
2. I might not relate to you. Other people with rheumatoid disease (PRD) might not share my experience. This goes for the disease and the meds. Some have 1 joint affected; others have 100. Some PRD have 24/7 symptoms; others have periodic flares and feel more normal in between. Some improve greatly with meds; others might as well inject water.
3. I need to take care of me. I learn this one over and over. It’s so hard when you love to take care of others. And even harder when disability enters the picture. But you need to do whatever it takes to take care of yourself – so that you’re able to do the other things you care about.
4. Every day is not the same. This is good and bad. But I sure wish I’d known that the course of the disease changes a lot over time. Your RD today might not be the same as your RD in 5 years. For me that means it changes what part of me is most severely inflamed or whether it’s swollen or red or stiff. For some I know now that can mean remission, so I always hope for that.
5. I don’t have to stay on treatments that don’t work for me. I wish I would have known how long to try a treatment to see if it works. I did 6 months on some meds, and 2.5 years on another. If there are unpleasant side effects like I had, 3 months seems like plenty of time. I’d look at the clinical trial data and see how soon people tend to respond.
6. Doctors don’t know everything. I wish I knew that doctors often don’t read research and are not aware of cutting-edge research on rheumatoid disease. Much of this information is available online if we make an effort to look for it or participate in a large patient community like RAW.
7. I’d never be the same. I wish I had known on the day I was diagnosed, I how much rheumatoid disease would change my life. In the end it’s up to me how much of my life I get back – even if I have to fight to get it. My pursuit of happyiness is my responsibility. But RD changes things.
8. It’s okay if people don’t get it. I wish I knew up front that most people will not understand or believe what it’s like to live with RD. They have nothing to compare it to and they tend to assume you are exaggerating. Knowing this is typical would’ve helped me feel less hurt when it happened over and over. I wrote about this in my first month blogging, and others were helped to know it’s just a normal experience with RD.
9. We do not understand this disease yet. There is ongoing research on a myriad of topics related to rheumatoid disease and other immune mediated diseases. If someone tells you definite facts on how rheumatoid arthritis starts or is cured, they are probably wrong – at least in part.
10. No one can tell me my future. I wish I’d known that there’s no typical RA. People will tell you “It will get better,” or “It will get worse,” or “Meds will help just be patient.” But their experiences are no predictor of yours or mine.
Bonus 1 more:
11. Trust myself. I wish I’d realized that it’s okay to speak up when doctors or others say things that don’t seem right. My experience is my experience and that is valid even when it’s different from another’s. I’m not crazy or exaggerating – this disease is a crazy exaggerated disease.
Well there are 10 things I wish I knew 10 years ago. I feel like there could be many more on the list. I hope this helps someone else think outside the box. One thing I’ve learned in 10 years with this unwelcome companion of RD is this is still my life to live.