I Can and Cannot Do This: On Coping With RA
Coping and managing RA is cumbersome. Even for those that have had RA for a long time, managing all the extra pain, medications, feelings, doctor visits, stress, and more that come with RA is extremely difficult. Today, I wanted to provide some of the ways in which I (try to) tackle RA:
5 ways that I manage rheumatoid arthritis
1. Reading about RA.
I try to find out everything I can about this disease. From possible comorbidities to what other people with RA experience on a daily basis, I consume as much content as I can.
This does two things for me: it helps me make sense of what is happening to my body while simultaneously giving me some element of control over this disease. Reading and learning about RA gives me a particular language to access and talk about how exactly my condition is progressing.
2. Keep a journal of how you’re feeling and what symptoms you’re having.
I now regularly keep notes in a separate RA journal. In here, I will include everything that I am feeling (as it relates to RA). For instance, I like to start each morning by taking note of which joints in my body are hurting and out of those, which are stiff and aching. Then, I’ll talk about how I’m feeling, whether I feel relatively okay or if there’s something particularly stressing me about having RA or if I’m noticing a new side effect from Humira.
Either way, journaling like this keeps me accountable and forces me to actually deal with RA, rather than just hiding from it and continuing to practice denial (which I used to when I was first diagnosed but I am trying to break that, as hard as it is).
3. Take your medications regularly.
Our medications keep our bodies functioning and—relatively—healthy. But in the general chaos of life, it can be hard to keep medications in check. For instance, I have two medications that I have to take twice a day, in addition to the Humira that I take every 14 days. I invested in a pill calendar (both physical and online on Google Calendar) early on to help me keep track of when I needed to take my medicine.
For Humira—and I’m sure other biologics have similar apps—there is the Humira Complete app, that lets me keep records of when and where I inject myself. It’s also useful to keep track of the identification number and expiration date of each pen, just in case there’s an adverse reaction to the medication. Either way, these tools have helped take my medications regularly.
4. Talk about having RA with someone you trust. If it’s hard to talk about, interact with our community members here.
Talking about how RA affects you and your life is one of the hardest but most impactful practices to cope with RA. RA is incredibly complex; there are so many different experiences of the disease, and yours is equally valid and deserves to be heard.
As hard as it might seem, talk about RA with someone you can fully trust. Divulge everything. Get it out of yourself and into the world. In the same vein of reading and learning about RA, talking about it gives you a language to communicate about and with your disease. It gives you some semblance of agency over what happens.
That being said, not everyone will want to hear about your struggles with RA. And that’s okay. Just know that the people who truly care for you will always be there for you and will listen to you no matter.
5. Be honest and upfront with your rheumatologist.
I don’t know if anyone else has this experience, but I have a tendency to downplay my condition. Random pains and symptoms that I should probably be communicating to my rheumatologist often go unmentioned, simply because I don’t want them to be real (remember denial?).
But this is a bad practice. Do not do this. Be open and honest with your rheumatologist; tell them everything about your RA. I’ve adopted a practice of writing down a laundry list of symptoms and feelings that I will go over with at my next appointment, line by line. This helps me not forget that weird cough that I wish weren’t real.
These management tips are from personal experience
Most of these ways to deal with RA are highly personal to my own lived experience with RA and may not apply to everyone else, but I hope they might give you some inspiration or help you in your journey with RA. Ultimately, these ways to cope with RA stem from a recognition that I need to transform the self-pity I’m prone to feeling into opportunities for growth and learning, which is something I’m continually trying to practice.
How often you do experience an unexpected boost of energy?