Lana Barhum is a legal assistant, patient advocate, freelance writer, blogger, and single parent. She has lived with rheumatoid arthritis and fibromyalgia since 2008 and uses her experiences to share expert advice on living successfully with chronic illness.
My world has changed considerably since chronic illness. But even though I have had rheumatoid arthritis (RA) and fibromyalgia for nearly eight years, there are still times where I view my body as my enemy, and I don’t know if I can be the “me” that I need to be.
How can I have a normal life, raise my kids, be successful professionally, and find love again when my life is consumed by the monster that is chronic illness and pain?
It is has taken me time and real life comedic moments to come to terms with that monster, whom I call RAF (an abbreviated combination of my RA and fibromyalgia). And lucky for me, RAF is always around.
My revolving door plight
RAF is part of my biggest daily challenge—that revolving door in my office building that I can’t always push. The non-revolving door, I feel, is for people with visible disabilities and I am not part of that reputable group. Most of the time, it takes all the strength I have to push my way out through the revolving door. And, there are times when I need help.
One evening, I found myself struggling with brain fog, combined with a lack of coordination, strength and mobility. RAF was suddenly standing behind me breathing heavily, growling, and pulling me backwards. I contemplated whether RAF expected a fire department rescue. After what seemed like an eternity, the door started moving and I felt the cold February air outside. I didn’t have time to thank the hero who rescued me because he quickly walked off, leaving me both grateful and embarrassed.
As I sat in my car, I grasped how invisibly disabled I was. It took nearly eight years to come to a realization that I couldn’t push, lift, or move fast enough. All those years, RAF was impatiently waiting to be acknowledged. I finally did so with tears, conceding that RAF and I would be stuck in that revolving door many times more.
Stay away from sweet old ladies
I limped into the grocery store due to foot and ankle pain. I eyed the motorized shopping cart but decided against being classified as disabled or worse, a faker. After all, I was young and not visibly disabled. I gracefully limped through the store, with RAF hovering over me.
In the dairy aisle, carrying a gallon of milk that felt like ten gallons, I was approached by a boy who was about six. He curiously asked, “What happened to you?” The dairy aisle suddenly felt eerie and quiet, similar to a standoff in the Old West, with RAF and me dueling. There was awkward silence, as I desperately tried to locate and choke RAF but the jerk was playing a great game of hide and seek. I forced my best smile and said, in a serious tone, “Stay away from sweet old ladies and motorized shopping carts.” The little boy, satisfied, smiled, and hopped back to his embarrassed mother.
I quickly limped to the register and then to my car but this time, I didn’t cry. RAF hadn’t won. But I was learning that my disability, invisible for a long time, was starting to be visible. Sometimes, that scares me. But other times, it is room for a lame comedic moment.
I cannot make RA and fibromyalgia disappear. RAF is here for the rest of my life, lurking in the shadows, inside revolving doors, in supermarkets, and at other public places, waiting to humiliate me when I am most vulnerable. He is unpredictable, waiting to reveal his large yellow eyes, demonic horns, green scaly face and rows of sharp claw-like teeth. His body is swollen with thorns sticking out of it, reminding me of my own joint swelling and muscle pain. RAF might be a figment of my imagination but I can see pain and suffering through his piercing eyes.
I have obviously exaggerated about the monster that is chronic illness and pain, but that monster is still real. Thanks to humor, however, I have changed my perspective on how to manage my experience.
Here are five great lessons I have learned in my nearly eight years acknowledging the monster that is my chronic illnesses and pain.
1. My body is my friend. I can’t rid myself of the constant imaginary monster but very real pain that hovers over me, but I do have some control of my health through good lifestyle choices, including eating healthy, being active, and pacing myself. Experience has taught me how vital these choices are in feeling better, managing my day-to-day and working towards my long-term physical and mental health.
2. I am not alone. Because my monster can attack at any minute, I don’t isolate myself and I reach out to loved ones. I have been blessed with a unique support system, which includes several chronic illness support groups, where I have met many great people who understand my struggles and are available to me when I can't seek out family.
3. I am the person I always dreamed I’d be. I may be an achy version of me, but I am still the person I have always dreamed I’d be. The monster that is my chronic illness and pain may have closed some doors, but it has also brought about many unexpected opportunities that have changed my life for the better.
4. God and the Universe like me. I used to believe my monster was the universe’s or God’s way of punishing me. I now understand that illness, pain and suffering have no discrimination and I wasn’t specifically picked to suffer. Moreover, it is my choice to suffer or make the best of my situation.
5. I can still love my life. Chronic illness and pain are burdens to carry. But there can be humor in getting stuck in revolving doors and participating in supermarket duels. And, there's nothing like realizing the simple joys in life that everyone else is taking for granted, such as the giggle of a child, the support of loved ones, finding compassion and accepting humor. These are just some of the many wonderful reasons I still love my life despite my pain monster.