"Don't be afraid to ask for help. You are allowed."
Sara Joy Dean
Read the story of a professional writer, editor, blogger, and artist who suffers from Rheumatoid Arthritis, Sjögren’s Syndrome, fibromyalgia, and hypothyroidism.
10 Things living with RA has taught me - By Sara Joy Dean
If someone had told me 10 years ago that today I would be suffering from an illness I had only barely heard of, I would’ve thought you were crazy. However, here I am, having been officially diagnosed for three years. In this short time, I have endured unimaginable things in my life that tested my inner resolve like nothing else. In fact, here are ten things that I learned living with R.A.:
1. It’s not the side effects you should be worried about.
The side effects sound really awful for any of the major treatments for R.A. For some people it can seem more threatening than the disease itself. Don’t kid yourself. Rheumatoid Arthritis can be deadly. Just by having this disease your risk of dying from cancer or heart disease is increased. Rheumatoid Arthritis can attach not only your joints but also major organs. The complications of autoimmune diseases killed my brother three years ago at age 35, so I know all too well that it can kill you quickly and relatively quietly since the inflammation around your heart and lungs can develop without your knowledge.
2. It takes a while to find the right medications and for the medications to kick in.
Even when I did finally get my referral to a rheumatologist, it took quite some time to find the right cocktail of medications to kick in. Some can take weeks or months before you start to experience relief. In the meantime, it may get worse before it gets better. Hang in there. Relief will be found eventually.
3. Asking for help is not weakness.
Don’t be afraid to ask for help. You are allowed. While my brother was in the hospital, I was still just temporarily diagnosed by my regular doctor. I was eating meals in the cafeteria, but my hands were so stiff, swollen, and sore that I couldn’t open a water bottle by myself. I decided to own it and believe in the best of us. I would walk up to people who didn’t seem to be in a serious conversation and ask someone at the table if they would mind opening my bottle for me. It worked every single time.
4. It’s okay to grieve.
I had double grief myself. I not only was grieving my brother who died but also the future I had for myself, my dreams that were now dramatically altered. I grieved the person I was becoming having lost abilities and also lost my best friend in the world.
5. Using a walker is not just for the elderly.
I flared so badly that it became too painful to walk on my poor swollen ankles and knees. Even my cane, that I didn’t like using, became too little support. I was experiencing bad bouts of pain making it hard to walk before my brother died. He encouraged me to go ahead and invest in a walker. So, I did! I decided that we shouldn’t be ashamed of using something to help us walk around and maintain some mobility. I ended up purchasing a small three-wheeled walker that folds up small. I can’t tell you how many times people have asked me where I purchased it. If you don’t like the idea of a blah walker, there are some colors, or you can paint flames on it, or deck it out in stickers. Make it yours.
6. There is no shame in wearing a mask.
An acquaintance of mine has health issues as well, and her immune system was really low. She had thought about wearing a mask around her family who often had sniffles, coughs, and wouldn’t inform her that they were a bit under the weather before family gatherings. The rest of the family also liked to ridicule her for being cautious about her health, and she was afraid to wear a mask around them for fear of them being offended. The thing is that you have to own your strength. Know that you are stronger when you take care of yourself.
7. There is no cure for R.A., no matter what your well-meaning friends may say.
Your friends, especially the health-conscious, may try to convince you that your entire disease can be cured with diet and exercise. Believe me, if there were a way to cure this on our own, a good portion of us would’ve done it already. No CBD oil, cleanse, or vegan protocol is going to heal you. Will becoming more healthy help you? Oh, definitely. Some supplements may benefit you greatly. However, rheumatoid arthritis is incurable. Moreover, can show up in your body in ways you may not be able to detect or feel. If you adopt a healthier lifestyle and consult with your doctors on a regular basis, you are much more likely to be successful in treating it enough to keep your pain at bay and sometimes go into remission.
8. Support groups are amazing.
I personally don’t have an in-person support group I can attend, but I do participate in a few online forums and support groups and they are a godsend. It’s where we can share good experiences, encourage one another, and vent about doctors and people in our lives who don’t have a clue what we’re going through. It’s a battle that is much better fought together. If you’re spiritual you can pray for each other too.
9. It may take a long time to find your new normal, and it won’t likely look like a biologic commercial.
I can tell you that today I am so much better than when I was at my worst and could barely go to the bathroom and dress myself. I have gotten to a point now, where I can do things like type, walk a bit, and cook. It’s wonderful. It’s not, however, quite as active a lifestyle as the commercials might imply. You may not be able to assemble furniture, haul a spare tire, hold a heavy glass with one hand while whisking something in the other. You probably won’t be an Olympic ski-jumper, or compete on American Ninja Warrior. But biologics may make it possible to button and zip and hook things yourself. Or cook a dinner in a lightweight pan. Once you’ve hit peak pain, these acts alone feel like acts of extreme heroism.
10. You have to learn self-care.
Stress has an enormous impact on your health when you have autoimmune diseases. It’s easier to say, “don’t stress about these things.” If you were an active person before R.A. hit, and were able to hold down a full-time job and juggle outside family commitments, it’s likely that you didn’t do nearly as much of the self-care thing. Now, it is a necessity. Realize you shouldn’t feel guilty in asking those around you to share the load much more than they used to. By doing so, you reduce the likelihood of frequent hospital stays, which will be even more of a strain on family and loved ones. Find ways to set aside even a few moments to unwind, and if you can manage one day a week to do even more for yourself, do it. It will keep you healthier physically and emotionally.
I’m not going to be so Pollyanna as to tell you that I’m grateful that these things happened because they are making me this strong and courageous person. I personally, (like you I’m sure), wish that all of this hadn’t happened and that I could learn from my experiences some other way. However, I believe in gleaning what I can out of hard circumstances to help others, and I hope you can too. We’re in this together.
Sara is currently working on a spiritual non-fiction book about dealing with chronic illness, and writing her first cozy mystery novel. You may read her blog Beauty and the RA Beast or follow her blog on Facebook @BeautyandtheRABeast.You may read her blog Beauty and the RA Beast or follow her blog on Facebook BeautyandtheRABeast.