Rheumatoid arthritis causes the tissues and tendons surrounding affected joints to become inflamed and is more often crippling than osteoarthritis. Here’s how one rheumatoid arthritis sufferer learned to cope with the disease.
I am a firm believer in the adage: “When life hands you lemons, make lemonade!” After being diagnosed with rheumatoid arthritis at age 18, I spent the next 15 years discovering how to turn this condition into my own special brand of lemonade.
In high school, I was a student leader as well as an avid swimmer, tennis player and golfer. But when I was diagnosed with rheumatoid arthritis, simple tasks like raising a fork to my mouth, combing my hair, writing and walking became insurmountable almost overnight. I cried constantly, shunned friends and barked at my family. I didn’t understand what was going on. How could I explain it to anyone else?
The physical pain was excruciating, the fatigue exhausting, but the emotional distress was worse. I felt alone. No one understood why a young person had what they thought was a disease of the elderly. Why couldn’t I do my normal activities? I was moody, depressed and, for a brief period, suicidal.
Within six years after graduate school, I was confined to a wheelchair. Inflammation had eroded most of my major joints causing deformities, and the side effects from medications included hair loss, mouth ulcers, mood changes, loss of taste, bloating and open sores. At 79 pounds, I was emaciated and helpless, but I was tired of people feeling sorry for me.
So I got mad and began to fight back. My short-term goals included learning to make better decisions about my physical and emotional health and developing a pain management program. I read voraciously, took notes, and sought many opinions. I was like an investigative reporter who refused to stop digging until all avenues were explored. Only then did I feel comfortable making critical care decisions.
My long-term goals of getting out of the wheelchair and becoming functional and independent again were more complicated. It took 14 joint replacement and reconstructive surgeries, years of rehabilitation and rethinking and inventing new ways to do simple tasks. I learned to use my head and voice when my body wasn’t there for me. I learned how to stand up for myself when people would try to tear me down. I learned if I wanted anyone else to see me as a dynamic individual rather than a pile of arthritic bones, I first had to see and project myself in this new light.
As the pain slowly decreased and I was able to function better, I made plans again, developed relationships, got back into my profession, started arthritis support groups for young people and spoke out on behalf of people with the disease. Today, my path in life may be just a bit different and take a little longer, but my attitude about how I deal with arthritis is positive, hopeful, methodical and resilient. For others with this problem, here’s a list of the ingredients needed to make a good Arthritis Lemonade:
- Learn: Educate yourself about the physical and psychological effects of arthritis. Attend seminars, read books, call the Arthritis Foundation for free brochures and programs.
- Reach Out: Connect with others who have arthritis by joining self-help or support groups.
- Know Yourself: Know what makes you happy and angry. Know the times of day when you’re at your physical best and worst.
- Seek Support: Help your family and friends understand what you’re going through and be specific about how they can help you.
- Set Goals: Make short-term, manageable goals and reward yourself every step of the way. Then set some long-term goals in the same way.
- Manage Pain: Incorporate stress and pain management techniques into your daily activities.
- Rest: Take time out to relieve fatigue. Think of rest as an opportunity for your immune system to catch up with you.
- Be Positive: Believe in your coping strategies, intuitive skills and religious beliefs. Focus on the things you can do, not on those you can’t.
- Adapt Your Environment: Create a home or work environment that allows you to be the most productive. Use new technology and assistive devices to make your life easier.
- Be a Team Member: You are a part of your health care team, so communicate with your doctors regularly.
- Continue to Grow: Develop your own interests and talents, and define yourself by them–not by the arthritis.
- Let Off Steam: Give yourself creative outlets to express your feelings: write in a journal, scream at the beach, talk into a recorder, draw, etc.
- Prioritize: Be with people you like and do things you enjoy. Don’t sweat the small stuff.
Amye Leong is a motivational speaker, writer and organizational consultant who lives in Palos Verdes, CA.
