RA Life Lessons

Yesterday was a high pain day, and I had to prioritize some self-care ahead of writing this post. Understanding how to shift priorities around the ebb and flow of my health is probably one of the greatest lessons I’ve had to learn which brings me to this post: yesterday’s prompt for RA Blog Week was to write about five things I’ve learned while living with RA. Although I am usually a reluctant student, RA has taught me a lot about the world… About myself, about relationships and about my expectations of others.

  1. People aren’t mind readers. They won’t know what you want or need from them unless you explicitly tell them.

I used to get frustrated with my friends and family when I felt like they weren’t being sensitive to my Arthritis or my unique needs. But over the years I’ve learned that if I spell out exactly what I need, people will almost always accommodate me. If I say, “I know we had plans for lunch, but can we hang out in the morning instead? I’ve been feeling better in the mornings lately”, not only will my friend accommodate that request, but she’ll know to ask about the timing of plans in the future with increased sensitivity and understanding. Can you count on everyone to be responsive? Nope. But if you give people a chance to understand how they can help you’ll often be surprised.

2. Treatment goals are important, but it’s important they drive personal goals too.

The goal of any RA treatment is to reduce inflammation, pain, and other symptoms, right? Of course! But I’ve found that if I tie my treatment goals to “life goals”, me and my doctor are better able to work together to achieve both. For example, if I say “I want to feel good enough to get back to going to yoga three times a week”, that might mean going back to PT in addition to new meds – it might take a multilayered approach to achieve that goal. Either way, it gives me and my doctor another quantifiable measure of the effectiveness of my treatment plan. I also just think it’s really important that my doctor knows me as a person and not just as a patient. Multi-dimensional patients are more likely to receive multi-dimensional treatment plans.

3. You can empathize with your chronic friends, but you can NOT compare yourself to them.

For a lot of us with RA, this materializes in feeling guilty on our good days. When you know a friend is struggling to get out of bed while you’re out running, it’s hard not to feel guilty for your good days. Stop. You can’t do that. I’ve spent extended periods of time in my life bedridden, hospitalized, in a wheelchair, on crutches, recovering from surgeries, learning to walk again – one time I was even in a medically induced coma! To see me now it’s hard to believe how far I’ve come, and that’s why I refuse to feel guilty for fighting so hard to get back here. I’m holding onto these good days for dear life because I know that they can be gone in an instant. Comparing myself to others is just a waste of precious time.

4. It’s OK to just have a bad day sometimes. You don’t owe anyone, including yourself, an apology.

I call them pity parties, but my mom used to call them “Eeyore days” as in Eeyore from Winnie the Pooh. Such a sad donkey, he was. Even though a lot of the posts on this blog are filed under “real talk”, I consider myself an overwhelmingly positive person. I’ve gone through a lot in life outside of my RA – have you ever watched Shameless on Showtime? There’s an uncomfortable amount of parallels between my family and the Gallaghers. I’ve gone through all this dark stuff and come out on the other side, and I choose happiness because life is too short. But every once and a while I have a day when I don’t want to be the light and sunshine of this world or the smiling poster child for the Foundation. I want to sit on the couch in yoga pants all day, watch Netflix, drink wine, eat an unhealthy amount of cheese and just be pissed off at my body (and maybe even the universe) for feeling like it’s always failing me. I have a good cry – sometimes I even yell, but the point is that I purge that stuff because it’s too heavy to carry it around all the time.

5. It’s important to find a vision that resonates with you and carry that with you throughout your illness and treatment.

A few months ago, I began tagging a lot of my posts with the hashtag #RAwarrior. It sounds so silly, but the more I used it, the more I viewed myself as exactly that: a fierce warrior fighting back against this insidious disease. I would scroll through the tag looking for fellow warriors to follow because I wanted to connect with other people who were approaching their illnesses in the same all out, take no prisoners style. Even better than that, is that my non-RA friends started carrying the torch too. They would share my posts and describe me as a warrior to their networks of friends. Or they’ll text me on infusion days to say, “You’ve got this warrior woman!” Yeah, that kind of makes me feel like a badass! Sometimes it’s hard to have an identity separate from my RA because it is so ingrained in the narrative of my life, but I am not a victim. No, I am a warrior.