I am 44. I like the sound of that. It is easy to remember. It is fun to say. Celebrities my age are having babies. Magazines feature women in their 40s in bikinis, scaling mountains, and heading large companies. Friends and acquaintances my age are running marathons, opening businesses, taking up organic farming, and starting graduate programs.
I am not.
I hope to get through each day, with a minimum of pain in my maximized-agony world. Successfully showering is an achievement. Getting into clothes is another accomplishment, one often completed only by leaning or sitting on the bed, as my balance is faulty these days. A soft t-shirt that has seen many rounds in the dryer, paired with elastic-waist pants and wool socks are my favorite items of attire. The bra comes off as soon as I get home. My feet and hands freeze, even when the rest of me sweats, compliments of some kind of mystery autoimmune condition.
It would never occur to me to purchase, let alone wear, a bikini. I think I have a swimsuit somewhere, shoved in the back of a drawer, a relic of my before life. I now live in a world where the first thing medical providers visualize is my fatness, labeled as morbid obesity on nearly every chart in every office where I have been seen as a patient. I have been to two endocrinologists and three dieticians. I make healthy food choices and eat reasonable portions, but continue to gain weight regularly, as if my body is stockpiling for a nuclear winter.
I spend several hours each day organizing what some have called my medical “situation.” It is essentially an unpaid, full-time job that those without chronic illness may never truly understand. Tracking medications and their side effects. Charting pain and symptoms. Just filling the weekly pill containers can take hours. Scheduling appointments and arranging for transport to said appointments. (I can only drive for a limited amount of time before a pain flare.) Dealing with insurance. Using innumerable “portals” that medical offices have created to supposedly make it easier for patients to gather information and communicate with doctors. The list never ends. And I am only 44.
Each morning, I put on my shoes (slip-ons, because anything else is likely to make me tumble over from the effort), usually a particular pair that house the custom orthotics I wear to deal with unrelenting foot pain that could be a medication side effect, a symptom of my mystery systemic condition, or something else entirely. And, of course, doctors tell me to walk briskly each day because it will help me feel better. I don’t doubt the veracity of this statement as a general concept, but for me, brisk walking feels like a death sentence. I become overheated, lightheaded, and nauseous. My heart races (beyond its usual faster-than-normal pace), my hips ache, and my feet scream in anguish. The spaces between each rib revolt in pain. And then the itching starts, heat exacerbating my already extremely sensitive skin until I cannot scratch fast enough to meet the demand.
On the mornings I go to work (I am down to part-time hours now), I add powder to my face, to tame the fiery red rosacea that took up residence in spots some years ago and now has expanded to the entire area, including my extra chin. Without it, colleagues seem to think I am having an attack of some sort, so bright is the redness. At night, I strap on a CPAP machine which makes me feel like I am hooked up to a reverse vacuum cleaner or have an octopus adhered to my face. I lather my chronically dry feet in a lard-like cream designed for challenging skin, a potion that keeps my heels from cracking but has ruined every set of sheets in the house. (I stopped replacing and have simply accepted the oil-coated linens as part of my life as a 44 year-old.) I arrange the multiple pillows on the bed into a fort-like structure designed to support areas of my body that ache and cushion myself against the CPAP hoses. (I recently had very vivid dreams of visiting Niagara Falls before I awoke, covered in water droplets from a rhythmically spraying CPAP hose that had somehow become disconnected during my nighttime rolling.)
Each day I pace myself as I attempt to complete chores at home or tasks for work. Resting is important and the recliner, a piece of furniture I once found completely unappealing if not outright revolting, is now my best friend. I also have special cushions stashed at work, in the car, at the dining room table, and on the piano bench that allow me to sit in relative non-agony for a bit of time. I own three canes. Two help me get up or down the stairs in our home on days when I am wobbly. The third is by the bed, to provide stability when first arising in the morning or getting up in the middle of the night for a bathroom visit. This cane has four little feet on it, to provide the maximum amount of balancing power, something I never thought I would need at the age of 44.
The physical challenges of chronic pain are hard enough, but I am not alone in also being beset with mental health challenges. As one of my healthcare providers told me, while kindly making eye contact as I cried in her office, she has never met someone in chronic pain who did not also have depression. There is stigma in this, the mental health part of things, when others around you may think you just need to work harder or be happier or focus on the positive or just get out of your rut.
Stigmas be damned. If there is something useful that has come out of this journey through hell I have been on, it is that I have lost any sense of shame or embarrassment. I have heard similar stories from women who have been through labor. At first, they tried to modestly cover themselves and remain relatively quiet. Eventually, they threw off the sheets and groaned loudly with each contraction. I no longer care if I might be disturbing someone by groaning about my situation. Keeping quiet is not the answer. There were many times in my earlier life when I said nothing, but should have. I am stronger now, with a loud voice and a mind full of opinions. I am 44. And I will be heard.
The worst pain started in my bladder and urethra. These are not body parts one talks about in polite conversation, but I now ignore such social niceties. One of the (many) conditions I have is called interstitial cystitis. A fellow pain sufferer says that a doctor stated, Oh, I know what that is. It feels like you have hot pokers up our hoo-haw. Not a bad description. Another thing I have is called vulvodynia which feels like your private parts are being blackened with a blowtorch. All. The. Time. The treatments are no better--injections, catheterizing yourself and instilling cocktails of chemicals, nerve blocks, daily application of cream that burns so badly your eyes tear up unwillingly. I have PTSD from the pain AND the treatments, which, as one doctor told me, amounted to torture. Torture in an effort to remove future pain, but torture nonetheless.
How have I survived all of this? How will I make it to age 45? The answers are multi-faceted, but come down to ignoring the stigma and asking for help. I am grateful for pain medications, antidepressants, counseling, EMDR techniques, mindfulness training, meditation, gratitude journaling, complementary medicine providers, and more. Addressing the physical pain has been difficult, and has required me to be incredibly persistent, even when I feel that I have no energy left. Addressing the depression was actually more straightforward. I told my wife that I was scaring myself with my own thoughts. She took me to the doctor where I told the truth and got a prescription for a medication that has really helped. I see a counselor regularly and I have incorporated many self-help techniques into my daily routine.
This is decidedly not where I pictured myself at age 44 and I still have moments of wondering why this has all happened to me, but I have tools to help myself. I have leaned on and learned from others. I have been honest about my experiences and continue to share them in the hopes that others, too, may come out of the shadows and feel brave enough to ask for the help they need and deserve. There is no reason for any of us to feel alone or ashamed.
I am 44. And I am a warrior.
SARAH BIGHAM writes in Maryland where she lives with her kind chemist wife, three independent cats, an unwieldy herb garden, and several chronic pain conditions. Her work has garnered a Pushcart nomination and appears in a variety of great places for readers, writers, and listeners. Find her at www.sgbigham.com.