Ask Me About My RA
“Nothing happens in contradiction to nature, only in contradiction to what we know of it. And that’s a place to start. That’s where the hope is.1” --Abby Norman
I recently finished reading Abby Norman's memoir, "Ask Me About My Uterus: A Quest to Make Doctors Believe in Women's Pain", which is about her struggle with endometriosis and chronic pain. It's a deeply personal and honest account of what it's like to fight for your life in a healthcare system that is inherently broken--especially regarding women in pain. Using a mix of medical research and intriguing scientific literature woven into her own personal experiences, Norman reveals a long history of prejudice against women patients, which is sadly still happening today in many respects. Simply put, when it comes to pain and illness, women are not believed or taken as seriously as men are.
Living with the pain of RA from a young age
While I don't have endometriosis or anything related to it, I do feel a connection to Norman and her story. As a young woman in pain who was also struck with a chronic illness as a teenager, I found a lot of her experiences mirroring my own RA journey. Several challenges that both diseases share include: constant pain (often severe), the difficulty of coping with an "invisible" illness", medical debt and financial burdens, difficulty getting diagnosed, discrimination and not having one's pain and illness believed or validated, stigma, isolation, feelings of loneliness and loss, relationship problems--and the list goes on.
Norman endured pain and struggle in her life well before chronic illness struck her; to say that she had a rocky childhood might be a bit of an understatement. She grew up living in an almost constant state of "fight-or-flight," sharing an unhappy house with an erratic mother who was battling against her own emotional and physical demons and chronic illness. In high school, with no other supportive family members to turn to, she actually became homeless, bouncing from place to place and even living in her car for a while. At age 16, Norman became officially emancipated from her parents.
After graduating from high school, Norman's turbulent life began to change seemingly for the better. She was accepted to the prestigious Sarah Lawrence College in New York where she felt excited and hopeful that her life was finally about to begin. There were so many things she wanted to learn and study and do! She describes her time at Sarah Lawrence as a period of "rest and happiness for 18 months."
Unfortunately, Norman's happy college days didn't last long, as the first gut-wrenching pains of endometriosis shook her body, and her whole world, when she was just 19 years old. The pain and illness forced her to leave school, which she thought would be temporary at first. But as time and her pain progressed, she realized she couldn't go back.
Leaving college, a place she absolutely loved and where she felt she finally belonged, was a heavy loss to bear.
"The loss of that taste of life was something I've struggled to grieve; admitting that I will never have it again is to admit that I will never be the person I was before I got sick. That my life was altered in a way that I could not control.1"
Grieving the loss of identity after an RA diagnosis
This sense of loss resonates with me in several ways. When I first received my own diagnosis of rheumatoid arthritis (RA) at age 18, I had just graduated from high school, with my future--the rest of my life--looming on the horizon. But instead of being happy and excited to start college, I faced the future with fear and worry while suffering from unspeakable, horrible pain.
Mourning for my former healthy self, I kept looking back at my short, young life with profound sadness and grief. Sadness at being forced to give up things in life I loved: playing the piano, drawing, and painting, playing softball, traveling, and being an active kid. I felt deep sorrow for a future that I feared would never be. At least it wouldn't be the way I wanted it to be, I was convinced. Devastated, I, too, hated that my life was altered in a way that I could not control.
However, it's quite okay to not be the person you were before you got sick, even if it's difficult to get to this point of acceptance. After struggling for some time with depression, anxiety, and frustration, Norman realizes that she does have control over how she sees her pain and illness. She doesn't have to let it overpower her and define or ruin her life. Norman explains:
"I had two choices: I could either stay bitter and disappointed about what I didn't have, and what I would never have, or I could see the loss of control as an opportunity to change direction again.1"
RA forces changes on your life
Living with RA for 21 years has forced me to change direction myself many times. And during most of those times, I haven't wanted to. I've resisted, usually in negative ways: with procrastination, apathy, defeatism, depression, anger, disappointment, lethargy, anxiety. I don't deal well with change--especially if it's a change that I don't want. Frustratingly, RA and RA-related health problems change my plans all the time and one of the most maddening things about this disease is that it continually makes me put my life on hold. Letting go of control is hard-learned.
Over the years there have been so many things I've wanted to do, goals to accomplish, experiences to have, and RA keeps slamming the door on those dreams. By rendering me unable to walk or use my hands or with whatever other cruel type of punishment it wants to inflict on my joints, RA is a total party crasher. Travel the world? How can I stroll around Paris (or my neighborhood) if I can't drag myself out of bed?
Adapting to the changes RA brings
The positive side of all of this, I think, is that when you're forced to change directions in life, you learn pretty quickly how to be adaptable and likely more flexible and open-minded than others who don't face similar upheavals. You have to learn to "go with the flow" and accept what you can and can't do. Does this increase one's resilience and strength of character? I'd say so!
But going with the flow has never been easy for me, nor has living in the present. I much prefer beating myself up and wallowing in the past, drowning myself in regret and sadness and ruminating and worrying until I've worked myself up into a giant nervous wreck. What fun is positive thinking? How boring!
Seriously though, I do realize the importance of practicing healthy ways to cope and adapt to living with chronic pain and illness. It's essential, otherwise, you'll fall apart sooner or later. I've also learned a lot after living with this disease for so long, probably the most important thing being how to be loving and kind to myself in the midst of turmoil and disappointment. But it's not easy and I'm still working on it.
Another quote that I really like from "Ask Me About My Uterus" is what Norman says about changing her way of thinking about her pain:
"I like to think that it's not that I live in pain, but rather, that I live with it. I attempt to identify it rather than identify with it.1"
I, too, prefer to live with pain rather than in it. I also don't want pain and illness to be my identity. It's there, it's real, and it's going to be with me for the unforeseeable future. It will also continue to fight to break my body and my spirit on a daily basis. But my RA, my pain, will never be me. And it won't take my hope away.
"The hope of finding the answers, whatever they may be, is a reason to wake up and pull my weary frame from bed." says Norman. "It's a reason to engage in the world around me."
So thank you Abby, for helping me to see that I'm more than my pain. And for helping me to find reasons to keep engaging in the world.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?