For the sake of this article, I will assume the pronoun of she, since I am a “she” and I have Rheumatoid Arthritis. And this she was talking to her friend online the other day and revealing some things, some struggles, that she didn’t know/realize. This inspired me. So, I decided to give all of the friends of people with Rheumatoid Arthritis a little window into things we may not discuss or talk about with you. And there are reasons we don’t. And we wish you did know some of these things, but if you’re like me, you are always afraid of burdening everyone. Or becoming just a walking encyclopedia of symptoms and treatments. Or that you just won’t want to hang out with us anymore because we’re sick. But we want to talk about these things. Nay, we need to. (And yes, I said nay. No, I’m not in Elizabethan England. I have an M.A. in English Literature. It’s the way I talk. Seriously.)
- We may or may not get “better” quickly, and your definition of better is likely different than mine. While the wonderful drugs are on the market really are in many ways a miracle, they won’t return us to the state we were in before this disease ravaged us. When we do find a treatment to get our disease under control, and a medically induced “remission” it just means that we have halted the progress. Unlike the fabulous actors carrying a heavy glass bowl in one hand and whisking vigorously in the other, we probably cannot do these things on a regular basis without breaking a bowl, or having our hands cramp up by doing too much. Victory for us is really brushing our hair, taking a shower, and walking to the mailbox to check the mail without the assistance of a cane or walker.
- Normally if you pass a cold on to your friend it’s an inconvenience, but for me it could be serious. The whole host of drugs we take to be able to do things like walk to the bathroom and dress ourselves, also lower our immune system. So, we can catch anything and everything. We’re not being paranoid hypochondriacs. We really do need to carry a mask during flu season, wash our hands a half-billion times, and purchase family-size bottles of Purelle at CostCo. Your cold can easily turn to pneumonia in us. So please stay away if you’re even a little sick. We love you, but from a distance, please.
- We may not be able to work for quite some time. The reality is that while we would love to be able to continue with business as usual, we may not be able to continue in our jobs our in our line of work and certainly not full-time. The dreams we had may have come to a screeching halt and we may never get them back. It’s going to take time for us to have a portion of what we used to have. It may take us months or years to build back into doing something that produces an income. When you start asking about our work repeatedly, it just makes us more pressured and feel even worse about the fact that it feels like the world wants us to make a super-fast comeback. I know that someone with R.A. was on American Ninja Warrior. And someone with R.A. was in the Olympics. We are not them. If that was the commonplace standard, it wouldn’t make them at all remarkable, would it? It doesn’t inspire us so much as put pressure on to be some miracle, when the miracle for us is just being able to be not in as much excruciating pain, and be able to go grocery shopping without laying in bed for two weeks afterward.
- Your tart cherry juice, vinegar, coconut oil, matcha green tea, hemp milk, flaxseed, chia, turmeric, and hummus smoothie won’t cure us. Thanks for finding the article about it. While all of these things are great, and really do help with inflammation, there is no cure. Whenever you hear of someone ditching all of their meds and going super-all-natural, they are also taking a gamble with their disease coming back without them knowing about it. Rheumatoid Arthritis is a sneaky beast that can attack your organs without your knowledge and take your life. As scary as the treatments for R.A. are, with scary side effects, it’s much scarier to think that your life could be cut short and you could have prevented it.
- Our treatment likely includes injections and/or infusions and that’s some scary stuff to live with. Right now, I’m on two injections per week. One is methotrexate, which is low-dose chemo that is given in much, much higher doses to liver cancer patients. The other is Humira, that I had to up to once per week instead of once every two. Both make me feel fatigued, and the methotrexate gives me side effects of nausea and headaches. It’s never fun. Generally, as injections go, the methotrexate is the easiest because it’s thin insulin needles and goes in easily. I also have a large territory to inject into. The Humira has a much smaller window of opportunity on your belly and upper thighs. It is a needle injector pen, and it hurts. Big time. I have to psyche myself up. Chant a mantra of, “I can do this” over and over. And yet still, sometimes it takes me by surprise. I have to inject myself enough that I have a bit of scar tissue in places, so I migrated to trying to do it in the thigh. I ended up wasting a whole dose not doing it right, and then had an emotional breakdown because I screwed it up. Thankfully I had a spare to do it again with. But Humira’s expensive stuff and not easy to get “extra” of if you screw up a pen. To compensate for all this serious crap, I put on a kid’s Band-Aid on the injection site. Why? Because sometimes it does bleed. My skin is pretty sensitive and kids’ bandages are made for kid skin. And, because it’s a nice pick-me-up to see a Disney character or Minion on my stomach.
So, to my dear friends, I want you to know, as the chronically ill friend I am happy you are here with me. And I may not have shared these things with you, because even though we feel like we don’t want to become all about R.A., these areas of our lives are. We may even be reading books to encourage us that actually discourage us from talking to our healthy friends about our disease. But I want you to know, that I own this. It is part of my life now. And there’s a good reason why I talk about it. As you will notice though, I’ll talk about health and about good food and the things you can do improve your own health as I improve mine. I also promise to listen to your problems, and your work woes, and your kid’s problems too. We’re in this life together. Let’s share.