I’ve lived with a chronic illness and the accompanying chronic pain since I was a kid. Over the years I had all the unlovely, hurtful labels placed on me. Whiner. Complainer. Hypochondriac. Wimp. Baby. Selfish. Spoiled. When you have an illness that only damages you on the inside, leaving you looking normal and healthy on the outside, that sort of, often unintentional, cruelty is pretty much par for the course. Before my early twenties I kept my illness a secret. My silence pretty much guaranteed that I would get misunderstood and incorrectly labeled.
It was my own fault. I didn’t trust people to understand what was going on in my body. I didn’t really even understand how to explain to them that my own immune system was attacking my body. I didn’t have words to explain the pain or the frustration or the depression that came hand in hand with being sick. It was isolating and frustrating and very, very lonely.
At around 24, 25 I started working with a nurse. She joined the patient education department I’d been working in as a girl friday. She was smart, intuitive and outed me so to speak. S picked up on what was going on with me and helped me find the strength to tell the world what was really wrong. I started learning how to tell people about a being sick, how to handle the “you’re too young for that” comments and such. And things got so much better.
Today, in my mid 30’s, I’m an outspoken advocate for invisible illnesses like my own Rheumatoid Arthritis and others like Fibromyalgia, Sojourns, etc. I try to turn every one of my bad days into a way to educate people about these illnesses. I try to reach out to newly diagnosed people and let them know that they are not alone.
Since becoming a voice for the invisible my world has gotten much richer. I’ve connected with people around the world. I’ve been quoted by the Arthritis Foundation in a national publication. I’ve increased awareness, knowledge and compassion in almost everyone in my world.
Almost everyone. I’ve recently been lucky enough to spend time with my aunt and uncle. More than I have in a good while as they live halfway across the country from me. And I’ve discovered that they are some of the ones I’ve been unable to reach. I’ve been guilt tripped for skipping a dinner out because chronic pain and fatigue had leveled me for the day. I’ve seen the look in their eyes when I beg off from a full day of walking or a bike ride in the mountains because of my illness-induced physical limitations. I know they see my attempts to explain my physical struggles as excuses to avoid family events. It makes me sad. They just don’t understand.
I’m not making excuses. I’m providing explanations. It’s up to them to listen and attempt to understand. I’m sad to see that they’re unwilling to do that. I’ll keep trying though. Everyone is reachable. Everyone is teachable. I will get through to them one day too.