It takes courage to climb a mountain, even — or especially — when that mountain is invisible.
My version of courage on a daily basis is not to attempt to climb the highest mountain but to surmount the invisible roadblocks that rheumatoid arthritis has brought on my life.
I had experienced moments of being brave before my RA diagnosis five years ago: first dates, sticking up for myself when being bullied, getting my first tattoo that lead to more than 20 within a few years later, applying for jobs I didn’t think I was qualified for.
But I lived a number of years where I didn’t truly know much about courage — until I had three lifechanging experiences that defined courage for me, all before my 30th birthday.
I’ve always had the courage to be myself, but what happens when you have to start thinking about someone else at the same time that your body becomes your own worst enemy?
My First Bout with Courage
My first really deep experience with courage was when I found out I was going to be a young mom with only 14 weeks to prepare for when my child entered the world. (That’s right — I didn’t know I was pregnant until the end of my second trimester.)
While that experience was filled with many mixed emotions, it soon became the biggest blessing of my life. Being Jacob’s mom fills with love that fuels me. I had to take big steps to make my life no longer just about me.
My Second Bout with Courage
My second experience with courage was going from being a mother to a single mother. Could I work full-time, take care of a child, and be good mom? Could I provide for my child working as an esthetician? Questions like this floated through my head when I was trying to muster up more courage to face this major life change.
At the time, I thought they were the most difficult questions I could ask myself.
But it turns out that this was only preparation for a new era of darkness that took tremendous courage to fight and rise above.
My Third Bout with Courage
After years of struggling with bizarre pain, fatigue, and other symptoms, I was diagnosed with rheumatoid arthritis at age 29, followed by a long list of related conditions: fibromyalgia, osteoarthritis, endometriosis, anxiety, and depression.
It took more courage than I thought I had to accept each one. I didn’t know that chronic illnesses often come with an unwanted crew of comorbidities.
I had new set of concerns to grapple with.
Can I still be a mom with this debilitating illness?
How am I going to provide for my child while on disability?
How can I take care of a child when I can barely take care of myself?
Why is there so much wrong with me? Will the pain ever stop?
Will I ever stop feeling overwhelmed, angry, resentful?
For me, living with chronic illness as a single parent, courage meant developing a new backbone as arthritis causes mine to painfully degenerate.
The Courage to Confront a Diagnosis
Chronic illness instilled a lot of fear in my life, fear that never really goes away but that I’ve learned to live with.
Even before I heard the words “You have rheumatoid arthritis,” I was fearful of myself because my body was misbehaving but I didn’t know why nor how to control it. I was scared to find out the cause behind these invisible signs yet desperate for relief. I couldn’t ignore it anymore. had to face the inevitable.
It takes nerve to step into that doctor’s office or lab, whether for the first time or after you’ve lost count of your medications, doctors, and tests.
It takes resilience to face each additional diagnosis or symptom that comes along the way because chronic illnesses are like chips — you can’t just have one. Each one becomes easier to handle yet we still fear the bigger ones that we realize could be glooming over us any day. It takes time to develop those coping skills and hope for a better tomorrow between the bad days, which can unpredictable.
It takes tenacity to fight the guilt from all the things rheumatoid arthritis robs you from achieving.
It takes determination to fight the mental health side of living with chronic pain and fatigue or when inflammation and medication side effects make you feel just not yourself.
It takes guts to apologize and admit when the pain gets too much and we lash out at our loved ones.
It takes heroism to stick up for yourself when others doubt your disease severity or even whether you are sick at all. It’s not easy to step away from those who make you feel worse, even when you are supposed to be bonded by blood or time.
It takes resolution to deal with all the medications and their long lists of side effects that you are taking a gamble on. Everyone is different, you don’t always know which pick of the list you could get or when. When the need for surgeries comes up, I find myself searching for the resolve to go through the whole process again and the time it takes to heal.
It takes commitment to go through the grieving process, if we ever do finish grieving with a progressive illness because the losses never quite stop. Developing the coping skills for each loss as it hits you is something you need to work on and build up.
It takes spunk to find the humor in our situations. Sometimes laughter seems like it’s the only thing keeping me from focusing too much on the negatives.
For those searching for their courage or living each day with courage while battling chronic illness, I see you and I applaud you.
Even if you don’t think you are feeling courage at the moment, I know you are.
Want to Get More Involved with Patient Advocacy?
The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.
