Whoever I was before rheumatoid arthritis — my interests; my friends; what I ate; what I did for fun; what I did for work; how I approached mothering; my choice in clothes, shoes, men, and even music — it was all affected by my diagnosis at age 29.
Not all of it changed overnight. But gradually the person I was pre-RA became more and more of a stranger. A ghost. My pre-RA self felt like someone I used to know well, but could no longer recall the details of our closeness, like a childhood friend you stopped playing with after elementary school.
It’s only natural that I was hit — hard — with a grieving process of losing who I once was, over and over, as rheumatoid arthritis continued to leave its mark on my life.
A Non-Stop Cycle of Grief
The thing with chronic illness is that the grief doesn’t stop. It might slow down as you accept one thing but can easily pop up again when you realize that your disease has impacted your identity in yet another way. There is no end to chronic disease, especially when it is progressive like autoimmune forms of arthritis. These losses are unending and difficult to resolve, which puts you in a state of grieving over and over. Reaching a permanent place of acceptance is next to impossible because you don’t always have a chance to finish the grieving process.
There was a point in my life where self-acceptance seemed next to impossible. There was no going back to the past, and the future was uncertain and looking uneasy. A future I could never have imagined, where one day I would wake up sick and never be truly healthy again. A future where I have to ask questions like, How bad will the pain get? How will it affect my life when it has done so much already? How will those I care about cope with my illness? How will I cope with my illness?
The words “I have rheumatoid arthritis” played over and over in my head like a broken record. I felt like I couldn’t escape the emotional grasp of a severe chronic disease diagnosis.
Chronic illness chisels away the main traits, hobbies, and habits that form your identity. Losses can be enormous, multiple, permanent, and common.
What I Lost
I lost family members as they looked away when everything got too real, when my anger made me lash out from years of not having my health taken seriously by those who should have.
I lost the ability to work as an esthetician, a career in which I once thrived, only to unexpectedly crumble in tears in the back room unable to handle the simplest tasks as arthritis ate away at me.
I lost friends.
I lost lovers.
I lost hobbies.
I lost comfort.
I lost cognitive function.
I lost my mobility and dexterity as my joints slowly became less functional.
I lost the ability to fight off infection easily.
I lost respect from others who were quick to judge, especially with my invisible illness.
I lost my health.
I lost hope.
I lost so many parts of myself.
A Struggle for Acceptance
Many people expected me to be fine and would not accept that a severe chronic disease diagnosis would affect me so badly. Hearing variations of “You’ll be fine, you’re young” infuriated me. Misconceptions from others — “young people can’t get arthritis”; “you look totally healthy” — made accepting my illness more difficult. I even questioned whether my symptoms could be in my head. Was I exaggerating all this? No.
I feel emotions like anger and depression when I find someone who is uncomfortable with my illness and thus will not get to know me. No one wants to feel judged or rejected, especially over something they have no control of. Having to explain myself and my invisible illness over and over to others — to tell them how I can’t do things like them — is like living a mini existential crisis each time.
I never know who understands compassion and can see me for me, not my disease. I mourn how easy social situations were before chronic disease. I want to be treated like anyone else. I don’t want to be treated like a leper because I am ill; my disease is not contagious. I miss how easy it was to date, make friends, find work, and go out and be social before having a chronic illness. I mourn my old life when the loneliness sets in. I want to be a normal 33-year-old woman. I wasn’t ready to live like this.
Acceptance didn’t happen overnight. I went through a very confusing state where my emotions were often destructive. I tried to ignore my reality. I was angry and explosive. I was living out the stages of grief.
I took a long look at that list of the five stages of grief — denial, anger, bargaining, depression, and acceptance — and said I needed to be at acceptance. I need to do that for my son and for myself; I cannot live like this.
But how to get there? I’ve forced myself to live out words and mantras like:
- This is my life now
- Actions speak louder than words
- I want to live, not just survive
- I can’t let it break me
Somewhere in all the symptoms, doctor appointments, medications, and negative emotions, I began to look for joy and beauty in life. I’ve learned to appreciate the smallest moments and focus on those over the drawn-out horrible ones. Somewhere in the darkness, I discovered, is beauty.
Finding My Purpose
People ask me now how do I live with this? How do I stay happy?
Aside from the guidance of a social worker, regular exercise, healthy foods, RA medication, antidepressant medication, and medical marijuana, well, I had to find a lot in myself. I found my purpose in all this mess.
Celebrate the new you, the life lessons, the people who’ve stuck with you through the bumpy, thick, and thin. Celebrate the strength chronic illness has given you and shaped you into today. Don’t focus on what you can’t do, but what you can. Learn gratitude; it doesn’t happen overnight. Find your tribe of other people living with chronic illness to support you. Take focusing on the positives seriously. Know there will be bumps — sometimes big ones — but know the steps you need to take to get out of the downward spiral.
Find something you love to do and do it well. For me, I love all that advocacy has to offer — helping others, volunteering with arthritis non-profits, involving myself in research, studying new topics that interest me. I also relish writing, painting, healthy cooking (and the occasional treat), exercise, music, and the sauna.
I am always trying to think about self-growth and self-awareness; not just for myself but my young son. I don’t let my disease define me. Rather, now I see that my RA has given me purpose and strength I couldn’t find in me before.
I know I will grieve again, but each time I become better equipped to handle it and bounce back.
