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Happy Anniversary: 25 Years of Pain, Grief, and Hope

Last updated: December 2022

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” -Khalil Gibran

July 11, 2022 marked the 25th anniversary of my diagnosis with rheumatoid arthritis, which I find very hard to believe. I believe it, of course, because living every day with pain and swelling makes it impossible to forget that I have the disease. It just boggles my mind that I've lived with RA for such a long time and it's a bit shocking and depressing to realize that I've had this disease longer than I haven't had it.

My 25th anniversary with RA

A quarter of a century is a long time to be in a constant battle with one's own body. My old pre-pain and pre-illness life feels so far away when I stop to think about it. Can I even remember what it felt like to be "normal?" Was there a time when I would wake up pain-free and innocent of the heavy weight of chronic illness? Yes, there was, even if it doesn't seem like it now.

Diagnosed at age 18, I often feel like I was robbed of the life I could have and should have had if not for RA. Instead of enjoying going to college and the beginning of my young adult life, I felt like a broken and brittle 80 year-old when I was still a teenager. I wonder just how many doctor appointments I've gone to during these past 20 years, how many pills I've swallowed, and how many injections and I.V infusions I've received. How many phone calls and MyChart messages and blood draws have I done? Too many to count.

The "what if" questions

What would my life look like now if RA was never a part of it? I don't know and there's no way of knowing, which is so maddening. It also doesn't help things to wonder "what could have been?" because the reality is that for some unknown reason, I was struck with this devastating disease. At age 18, I felt as though my life was ending instead of just beginning.

Reflecting on the early days with RA

The first few years of having RA are clearly burned into my memory. I remember how scared, sad, anxious, and devastated I felt realizing I would have to live with debilitating pain for the rest of my life. Each morning I awoke with feelings of dread and despair. Would this ever go away? What's going to happen to me? How will I ever get used to this pain?

I prayed and hoped so desperately that this was some sort of nightmare from which I would soon awaken. It was also hard to fight against the constant fear that I would someday end up like my grandma--my body permanently damaged, disfigured, and crippled. When I closed my eyes, I saw grotesquely bent and twisted fingers, lumpy swollen knuckles, and my body confined to a wheelchair by age 25, if not sooner. I feared and grieved so many things at the same time; it was unbearably exhausting and overwhelming trying to cope with so much physical and emotional pain.

Finding hope

One of my favorite quotes is by writer, historian, and activist Rebecca Solnit:

"Grief and hope can coexist."

The quote is from her 2004 nonfiction book, Hope in the Dark: Untold Histories, Wild Possibilities. Her essay-turned-book was originally a reaction to what was going on in U.S. politics at the time, but now it seems to have transcended its original purpose and feels surprisingly insightful and relevant to the present day. Especially during the last two years (and more, I'd argue), life has been riddled with so much despair, grief, pain, trauma, illness, hopelessness, and a whole host of other negative and frightening things.

The quote resonates with my own RA experiences and journey so much that I've used it many times when talking and writing about living with the disease. I firmly believe that grief and hope can coexist, even when it feels like an impossibility. Common sense and logic tell us that no, these 2 things cannot survive together. But they can and they do, even when you're suffocating in the darkest, deepest, blackest hole of despair and grieving for the life that was stolen by this cruel disease. You must find a way for grief and hope to coexist if you want to move forward and continue living.

Staying positive with RA

Things that have helped me stay hopeful during all of these years of struggling with RA include: finding gratitude (even for tiny things), the support and friendship of others, reminding myself that things always get better even when it seems like they won't, self-love and self-compassion, and my spiritual and religious faith.

Staying hopeful, especially if you're in searing pain, is not easy. In fact, it's really really hard to do! But like I already said, you have to find a way to hold onto it. And how I manage to grasp onto shreds of hope during my darkest and loneliest days--I don't know. The past 2 years have been especially rough, physically and emotionally, due to the devastation and trauma that the COVID-19 pandemic has thrust into our lives, but somehow, I continue to find hope even when the heavy yoke of grief seems too much to bear.

I refuse to let RA and chronic pain define me or take over my life or snatch away my happiness and joy. No matter what, a little spark of hope will always be there, flickering in the dark.

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