Rheumatoid Arthritis feels like a curse: unfair, unexpected, devastating, and incurably troublesome. It rises up out of nowhere and takes over your life, robbing it of any trust you held towards the body that contains you. You look into a mirror wanting to trust what you see, at least until you discover that somewhere deep inside lies a destructive traitor. It leaves you feeling lost and overwhelmed, wondering whether anything will ever return to how it once was before. The body that’s always been your home turns into an unknown abode with stuck doors and odd angles, full of shadowy corners and busted lights. You can feel it linger inside you. Will you ever feel at home again?
This is where I found myself at age 15, after my body developed symptoms of this dis-ease. Joints flared with painful inflammation and stiffened into concrete. Being a teenager, I also flared with unrelenting emotion. Before diagnosis, it meant worry and wonder over what could truly be the cause of my symptoms. “What’s wrong with me?” After diagnosis, there was a tiny starburst of gratitude from finally knowing what it is that’s “wrong with me”, at least until the weight of the life sentence finally sunk into me. Chronic pain. No cure. It all became too much; my original health would never return to answer the door.
I wanted to give up. I wanted so much to give in. Just fade into the twilight as I fell asleep, never to rise with the pain of my disease again. Body aching throughout and sobbing to the point of exhaustion. I know I’m not alone in having felt that upset, that depressed. Drowning in the depths of despair as my joints pulled me under the surface for yet another flare. If you have RA (or any chronic health condition), you’ve felt those emotions too.
It’s important to acknowledge that these feelings exist. Once we recognize those monsters hiding in the corners, we can drag them out and face them in the light. See, it’s not just the disease of Rheumatoid Arthritis that’s unfairly robbing us of our health and comfort, but also the variety of emotions hanging on its coattails waiting for the perfect time to smother our minds. It’s not easy dealing with, coping with, and living with pain. The emotional pain is just as important to acknowledge and attend to as the physical aspect.
Over the past 23 years that I’ve lived with Rheumatoid Arthritis, I’ve obtained help from a few therapists as I coped with living in my body. Not just as a body with Rheumatoid Arthritis, but one that suffered PTSD from other health events. Depression, anxiety, and panic disorder piled on with the PTSD and I recognized that I couldn’t get through this alone. I knew I needed to help. I didn’t want to give up and I didn’t want to say goodbye. But after a while, dealing with the daily pain gets to be too much. I’m certain you know how that feels. Exhausting. Sad. Unfair. Too much. Why did it have to happen and what did we do to deserve this, right? I know. But you know what? You’re not alone. Not at all. And you know what else? You deserve to get all of these overwhelming emotions out of you because it’s too much to expect to deal with all on your own. It’s okay to ask for help. To let it all out with the help of someone educated to listen and support you; guiding you through the choppy currents inside to find that stable rock to grasp onto, holding steady.
As patients, we tend to focus on the physical needs of our condition: specialists, treatments, doctor appointments, medication. But we also need to focus on caring for our emotional and mental health. The best way to do so is by pursuing, obtaining, and maintaining mental health treatment. Pursuing as in looking for a trained provider who can help you meet your emotional needs, whether by asking one of the doctors in your treatment team for a recommendation, checking for in-network providers, or searching reviews online; call them up and set that appointment. It’s okay if they turn out not to be the right fit. That does happen. Keep looking, calling, even tweeting for a recommendation. My first therapist after diagnosis was one trained in helping those with chronic pain conditions. Is there one near you? That’s a good place to start: a provider who knows a few things about this place we now call home. Obtaining as in making that appointment and showing up to it. You deserve to feel better. Now your disease may not agree, but I bet your heart does. Show up to that appointment and open up your heart and mind and let all that burdensome crap out. What do you need? Want? How can they help? Talk. Get it out. Maintaining as in making a 2nd appointment and showing up again. And again. And again. Go as long as your heart needs it. Currently, I see my therapist every other week, no matter what is going on. It’s good to have that bit of stability.
Therapy has been the main thing that has kept me going, despite disappointments and failures within my body (hello, infertility, I’m looking at you), work stress, life stress, etc. I’ve been going to the same therapist since 2005, after I had a bit of an emotional breakdown in late 2004 due to a then recent betrayal and break-up, and my 2nd open heart surgery earlier that year. I recognized that it was too much. I’d beaten the odds with my heart, been through 2 open hearts within 18 months, attending school and trying to get my life on track. I knew I didn’t deserve to feel like shit. I was anxious and panicky to the point of teetering on the edge of agoraphobia. I found a good therapist in-network. I made that appointment. I showed up, shaking, again and again. I was a mess for the longest time. There was a lot to work through, on top of having rheumatoid arthritis. When I feel I’m having a hard time again, my therapist is there to remind me of all that I’ve overcome and survived.
To be honest, obtaining a therapist, in my opinion and experience, is absolutely necessary when living with a chronic disease. Diseases are tricky bastards, throwing all sorts of random stuff at us when it’s least expected. One day, you’ll feel generally okay, pain manageable. The next day, all bets are off and oh God, did they just forecast for more rain?! Treatment isn’t a walk in the park either. It may carry side effects that leave you curled up at home too. It’s so easy to become overwhelmed by all that we carry with our dis-ease. But remember, you don’t have to carry it alone. You may only want the support during certain times, as needed. But it’s a very good idea to have a consistent mental health provider who knows your health history, your recent battles, and who can help you as soon as possible. Sometimes, when those difficult moments come, and you can’t trust yourself, you can at least trust them to help you through it. Living with our disease isn’t easy, it isn’t fair, and it’s okay to ask for help. You’re worth it.