I was diagnosed with rheumatoid arthritis when I was twenty-five years old. Over the past five years I’ve been working hard to stay optimistic, to keep looking forward, and to not let RA stop me from achieving my goals. Whenever possible, I like to use my experiences to make a positive impact on the lives of other people who suffer from arthritis. My family has even made raising awareness about arthritis part of our lifestyle. We raise funds and volunteer regularly with the Arthritis Foundation and I write about arthritis on several different websites. I always try to turn my lemons into lemonade.
RA is a complicated balancing act
But that doesn’t mean my life is always sweet. Living with RA is a complicated balancing act, and reminders of this fact can often feel quite discouraging. For example, I was very excited to be given the opportunity to write for RheumatoidArthritis.net. It seems like the perfect platform to connect with the arthritis community and try to make a difference. But, almost as soon as I agreed to write for this website, my RA flared badly and my hands became so painful it was difficult and uncomfortable to type.
It’s was a catch-22: I had been given the opportunity to write for this website because of my RA, but it was my RA that was making it physically difficult for me to write. What was I supposed to do? Pass on the opportunity? Write even though it hurt?
In this instance I obviously chose the latter, and I’m glad that I did. Because I’m sure I’m not the only person living with RA who has experienced these catch-22 situations, where I feel trapped by a paradoxical set of circumstances and forced to make a decision where it feels like I lose either way. I’ve been faced with dozens of these decisions over the past five years.
For example, I know that losing some weight would help reduce the strain on my joints. In fact, research has shown that for every pound of body weight lost there is a four-pound reduction in knee joint stress. But joint pain can make exercising a challenge, and some of the drugs used to treat RA, like prednisone, can actually cause weight gain. So what do I do? Take the prednisone to reduce the joint pain so that I can exercise even though it will make me gain weight? Or skip the prednisone and try to exercise despite the uncontrolled joint pain?
Pregnancy is yet another RA paradox. Many women experience remission while pregnant, so it is possible to carry a baby without experiencing extreme joint pain from RA. But, as soon as the baby is born, RA is likely to return with increased strength, making it very difficult to care for a newborn. And, since the majority of medications used to treat RA are not safe to take while breastfeeding, as a vulnerable new mother I was faced with another difficult choice. Do I breastfeed so I can bond with my son and give him what I feel is the healthiest start to life, even if it means my RA will flare to the point where I can no longer hold him? Or do I go back on my RA medications and give him formula, even if I believe that breast is best, so that I can care for him in other ways?
Making tough decisions with RA
Sometimes it feels like these lose-lose decisions are endless. Do I take the biologic even though it will suppress my immune system and make me more susceptible to illness and infection? Do I take the medication that causes insomnia and increased blood pressure, even though it will require additional medications to combat those side effects? Do I tell my boss about the limitations my arthritis might place on me in the workplace even though it may cause him to discriminate against me? Do I dance through my wedding reception even though it may cause me to need a wheelchair on my honeymoon?
These decisions are difficult and often heart wrenching to make, and there is no easy or seemingly right way to make them. The only thing I have found that helps is to share my experiences and get support from people who understand. That is why websites like RheumatoidArthritis.Net are so important – so we can support each other when RA presents us with yet another catch-22.
We don’t have to face it alone.
How often you do experience an unexpected boost of energy?