It has been one big experiment since 1983 when I was diagnosed with Rheumatoid Arthritis (RA) at age 23. I had just launched my career as a mountaineering instructor with the North West Outward Bound School and had sights on climbing Mt. McKinley (Denali). I ignored the doctors who said that I had to give my dreams up and adopt a sedentary life style. After walking through a lot of pain to continue my outdoor lifestyle and career, I not only climbed Denali but went onto climbing and guiding in the Himalayas.
Oh, there have been plenty of mornings that I have felt like Tin Man on the Wizard of Oz lubing up my joints with a dose of positive attitude to forge onward and a determined mindset to move through my pain. Years later, I am thriving. Life is good. I feel grateful. I still have to manage my “disease” but I am more at peace with it. I haven’t let RA define me nor put me in a box. That said, RA has shaped who I am today in becoming a more compassionate person. I understand working with pain and that suffering is a shared human experience. Everyone suffers and deals with pain. RA has been an important teacher. For anyone who has been diagnosed recently with RA or any chronic illness, my message to you is don’t give up! Your life is not over. What is ahead of you is a intensive study in self care and learning about your body. Click on your growth mindset.
Input overload. So many remedies, diets, methodologies and conflicting information bombard us. In addition, I have found that people with good intentions quickly would offer their unsolicited advice. At the beginning, I often felt overwhelmed. With all of this input, I felt challenged to navigate what was best for me. It has been a journey to find what works for me regarding the management of inflammation and taming the autoimmune system, the root cause of my pain. RA has affected mostly my hands and feet. More recently, during the past two years, I have had two episodes of inflammation on my cornea which was freaky and lasted for 8 weeks each time. Today, I live relatively pain-free and as an athlete. I believe that the following practices has served me well: 1) Eating a healthy diet and staying active; 2) Listening to my body; 3) Finding other venues such as acupuncture, yoga and massage to control inflammation, calm the mind and reduce stress; 3) Lastly, after many years of resistance, I have found that western medicine has its place in my picture of health. I currently take a weekly injection of Ebrel.
By now, in my life, my hands are the first thing people notice that are different. They look pretty gnarly, like an ape’s hand, but still are fully functional. Many times people think my gnarled hands are a result from my climbing days or an old injury. Seldom people are comfortable asking about the story of my hands. I always appreciate those who do ask me instead of making assumptions. Once I share that I have RA, most people respond with some story of a person they know who has arthritis. Such as, “yeah my grandmother has arthritis”. And, I am like, “no, it is not the same thing, though related, in that we both experience pain and it can be debilitating”. I continue explaining the role of the immune system triggering inflammation. The fact is 1.3 million Americans live with RA, according to Healthline. Women are at a higher risk to get RA than men. There is very little research funding going towards curing chronic disease relative to cancer research. My theory is that since RA doesn’t kill people so immediately compared to cancer, funding RA research will continue to be low priority.
To date, I have not brought much attention publicly or even privately about my RA. I have just carried on like everyone else, setting goals and living dreams. When I have shared this part of me, especially in the context of being an athlete, often people expect less from me in terms of performance, skill and ability. So, I have kept my RA story on the down low until people get to know me. Certainly, when someone asks me directly, I am open to talking about living with RA and answer questions. There is a kind of taboo in this culture to be direct in asking personal questions that have to do with pain and suffering. We all experience pain and suffering in some form during our lives. I think it is healthy to share those struggles. Brings us closer and more connected.
To learn more about my outdoor pursuits and professional story, click here on About.
One of my aspiration is to give voice to the community of people who live with Rheumatoid Arthritis who are thriving. I have visited RA forums and Facebook groups but I have not seen much that is positive and hopeful. What has been missing for me are the stories of those overcoming their challenges, living an active healthy life, a kind of celebration, in spite of the odds. One book that I recommend is entitled, “Out of Joint”, a personal and public story of arthritis, by Mary Felstiner. I appreciated her detailed coverage of the progression of drugs used for treating her RA. It was also the first and only book I have read about another person living with RA. I don’t know many people personally who have RA. I have begun this blog to share my stories and hopefully inspire others. Eventually, I hope to add other voices and stories of people living a chronic life, especially RA.
I support everyone to thrive and not just survive especially those of us who deal with chronic illness. The truth is that many people have a disability, hidden or obvious. We are all vulnerable. Self care and thriving relates to us all, as does, following our dreams.
If you have ideas and thoughts on any of the above, I would love to hear from you. Comments are welcome! Thank you for taking the time to read this page. Click to contact me.
Please join my Facebook group page by clicking here, RA Athlete-It’s about Thriving.
For more on this subject, go to Ouch! 6 Lessons Worth Sharing and Curve Balls: A Lesson in Self Care .