My Decision to Be on Meds
Those of us with rheumatoid arthritis are no strangers to unsolicited advice. RA is a disease that most people either aren’t aware of or are misinformed about. While most coworkers, acquaintances, and strangers are unfamiliar with the specifics of the condition, even our close friends and loved ones may not fully understand the ramifications of living with RA. Regardless of whether they know that RA is a lifelong, degenerative, autoimmune condition, the people we encounter from day to day may gather from our wrist splint, our limp, or our own admission that we are in pain. Pain isn’t just unpleasant for the person experiencing it; it’s also uncomfortable for the people witnessing it. Out of a sincere intention to be helpful, many people offer advice on how to deal with RA. They may share information about an article they just read or something that cured the RA of a friend-of-a-friend of theirs. Most of the time when I’m on the receiving end of unsolicited advice, I try to remind myself that the person is trying to be helpful, and if I can summon up the energy (which isn’t always easy to do when dealing with the pain and fatigue of RA) I try to educate the person about how the disease operates and why quick fixes don’t work. Yet, the piece of unsolicited advice that really gets to me is the suggestion that I should stop taking my medications.
As rheumatoid arthritis is an autoimmune condition, many of the drugs used to treat RA suppress the immune system. That’s scary for our loved ones to hear. But guess what? It’s far scarier for us to live it than it is to hear about it. Every time I’m relegated to bed with a cold, flu, or infection that “shouldn’t be this bad,” I think about the medications that I’m on and what they’re doing to my immune system.
In addition, many RA drugs also come with side effects that range from unpleasant to requiring monitoring from a doctor. For instance, my eyes have to be monitored by an ophthalmologist due to the small risk of vision loss associated with Plaquenil, and I have to have my liver function monitored because of the Arava I take. Indeed, it’s difficult to take a pill or get hooked up to an IV without thinking of the potential negative impacts these treatments that I’m taking in hopes of improving my health might have on my body. When people suggest that I go off of my meds, they don’t have anything to tell me that I haven’t already considered a hundred times or more. The fact is, RA treatment can be scary, but living with untreated RA can be scarier.
First off, rheumatoid arthritis is an extremely painful condition. There are times during flare-ups of the disease that the pain is too intense to accomplish anything, sometimes making even sleep impossible. That can happen while on medications that decrease disease activity. Untreated RA can mean that one experiences more days of extreme pain than days of tolerable discomfort. During flares, I am usually prescribed a corticosteroid such as prednisone. This drug is an immunosuppressant and carries other risks and side effects. I worry about those aspects of the medication, but I take it because it causes my inflammation and pain levels to rapidly decrease. I don’t love the potential risks in the future, but I’m trying to survive my present.
Second, RA is a degenerative disease. When it goes untreated, the risk of bone erosion and joint deterioration, as well as deformity, increases. In turn this makes the need for surgery more likely, which is expensive, painful, and causes temporary cessation of work, family care, and other responsibilities. In addition, joint damage leads to loss of mobility, which can make it impossible for one to take part in favorite activities or even errands and chores. This speaks to quality of life issues. I have been diagnosed with RA for 15 years, yet I am able to be fairly active and have not yet had to have an RA-related surgery. I attribute at least part of this success to my treatment plan. With RA medications, there is the risk of various health problems, but long-term damage from meds occurs in a small percentage of cases. In contrast, joint damage is very common with untreated RA.
Finally, rheumatoid arthritis can be fatal, as it is possible for RA to impact the heart and lungs. While mortality rates with this disease are rare, people with RA are at an increased risk of death compared with the general population, which is usually due to cardiovascular impacts of the disease. Therefore, going off of my medications means increasing the risk of dying from this condition. While the risk may be low, with stakes that high it’s hard to dismiss.
I would love a cure for this disease, and would be thrilled to not need any RA medications. However, my reality is that I do have active rheumatoid arthritis, and that I have carefully weighed the pros and cons of my treatment plan. When someone suggests that I abandon my medical regimen, I immediately feel the well-intentioned advice giver has no idea of what I’m contending with. While the suggestion may be given from a place of love, I have never felt comforted by this particular piece of advice. Rather, I feel judged for the difficult, continual decision I’m making between two unpleasant choices: RA meds with a variety of worrisome side effects and unchecked disease activity. While RA treatment is far from perfect, I have deemed that it increases my chances at a longer, happier, and more active life.
Has having RA put a hold on your ambitions?