Attacking Autoimmune Disease

My skin tingles all over as a torrent of angry cells flows through my veins; my soft tissue, internal organs and joints bloat and bulge; my body becomes a stationary object, a stuck stone. I am incapacitated. I labour to lift my limbs. I tolerate the physical discomfort but am crushed by the debilitation of fatigue.

This is not tiredness.

No longer fit for purpose, I am incredulous as my immune system attacks the body it is genetically designed to protect. In a warped twist of self sabotage, my healthy cells are at the mercy of rogue DNA as my overzealous immunity loses sight of its target, attacking me instead, with dependable regularity. The ailments come in waves, some merely ripples: numb fingers, unstable balance, tenderness in the kidneys; gentle reminders of hyper-response. Sometimes a tsunami of symptoms knocks me off my feet: ulcers explode across my mouth, some so painful that I am afraid to swallow my own saliva. My fingers swell, bulbous, the skin perturbingly taut and threatening to burst. A thick fog clouds my brain. Lymph nodes engorge across my system. My skull seized by the callous grip of pain. Still it’s the fatigue that defeats me, the dense smothering and inexplicable exhaustion that commands my surrender. My strongest stance cannot withstand an attack. I’ve learned that resistance is futile.

I’ve often had difficulty explaining my autoimmune condition. Words fail to define the undefinable complexity of this disease yet it often defines me, against my wishes. It took a decade for medical professionals to identify and confirm my disorder; it may take longer than a decade for me to accept the diagnosis. Only recently have I begun to tell friends, awkwardly tripping over my words, and feeling deep shame for my failing body. Weakness is beyond my acceptance.

I am 110lbs of muscular flesh, and in a normal week my body propels me up mountains as I run for miles and miles, skipping my way across trails like a skimming stone, bouncing across landscapes too tough for most. I am physically hardy, strong and fit. Speed comes easy, distance is a joy. I love to push myself; I relish the rush of satisfaction. I feel fresh, powerful, able. I am the girl who runs up mountains, agile as a fox. I bound through daily life organized, energised, quick, achieving much… I am effortlessly efficient, until I am not.

My body first began to malfunction shortly after the birth of my fourth child and it made sense to assume that four pregnancies had taken their toll. Often under par, I started to pay attention when neuropathy developed. I began to feel pitifully cold all of the time. I was constantly tired, despite my best efforts to eat and sleep well. But it was the frequency of newly developed migraines and constant thumping headache that became the desperate catalyst for action. I lost eighteen months of normality to crippling skull crushing head pain. When I look back at family photographs taken in those days it’s not joyful nostalgia that springs to mind, but rather the memory of the debilitating throbbing that was consuming me to the point of desperation. I recall being at restaurants with my children, head in my hands, internally screaming for the clattering noise of bustle to quieten. And I shudder at the memory of family holidays when I was too tired to join my husband and children as they enjoyed scenic walks and BBQs. My GP was unconcerned, women are often tired and endure headaches, particularly busy mothers, until blood tests returned with abnormally low readings relating to immunity. No matter, she said, probably just an infection. Another test a few months later was intended to show that everything was back to normal except it didn’t. Each subsequent analysis of blood confirmed that my body wasn’t functioning within normal parameters. I was referred for further investigation to a Rheumatology clinic. When you have an autoimmune condition, you give over much of your time to waiting… I wait months for appointments, spend an unreasonable amount of hours in waiting rooms, sit patiently as notes are typed, bloods extracted and then anticipate the results for several weeks. And now most troubling is the wait to see how this will unfold for me, for my lineal descendants; what unwanted inheritance have I unwittingly imposed upon my children? Such issues tend to run in families. The only drawn conclusion so far is that I have Connective Tissue Disease and Secondary Raynaud’s Syndrome caused by an underlying autoimmune condition that is still in its formative years. For now, I am a series of symptoms, a set of random results on a hospital computer screen, not quite fitting the diagnostic criteria for a real named condition, yet. Ironically, the diseases for which they monitor me have such alluring names: Hashimoto, Psoriasis, Psoriatic Arthritis, Celiac, Systematic Lupus… the euphonious sibilance blurring the sharp edges of illness. Which of the eighty or so autoimmune conditions will be assigned to my developing symptoms remains a mystery. More waiting. In the meantime, I have become a proficient manager of the crippling and grossly infuriating cycle of sickness that is my new normal.

But I am the girl who runs up mountains,

in the bitter shadow of the north face.

Being naturally averse to normality, you would think that having my body classified as medically abnormal would suit my disposition, however, medical normality is a mould I would prefer to fit. But perhaps my health is not too abnormal after all. According to the World Health Organisation, more than one in two people will be diagnosed with a chronic illness in their lifetime, and more than a third of those are caused by autoimmune disease. You are likely to personally know many people who suffer symptoms. I was in my thirties when my manifesting ailments demanded attention. Although young for diagnosis (the average age being closer to midlife), I am a typical patient. There is a clear gender bias towards women, with autoimmune diseases occurring at a rate of 2:1 as their immunity succumbs to the great physical stress of pregnancy and hormonal flux. I’ll take this opportunity to state the obvious that my four children were worth the extensive strain on my health. I like a positive spin on adversity so I’ve come to view my battle worn body as heroic, veteran, a vehicle of female endurance. Yet when my healthy cells are under attack, there is no option but to lay down arms.

But I am the girl who runs up mountains,

through howling winds and driving rain.

When I am well, I am winning. Determined to stand my ground, I train for combat, my self-discipline astounds me as I remain vigilant to good health. My life now is unrecognisable to my life pre-illness. I prioritise health above and beyond everything else. Selfish? No. I am useless to those around me unless I am well. I have dependents, commitments, ambitions, aspirations to live to my centenary- there is so much I want to witness, experience, enjoy and accomplish. My lifestyle was once an indulgent mix of negligent eating habits, sleep deprivation, a jam-packed diary and a higher alcohol intake than I’d like to admit. But the effects of chronic inflammation meant I was often distracted in conversations; I was a tired and careless driver; general weakness and malaise compelled me to cancel too many plans. My life now is incomparable and revolves around feeling well. There is no known cure for autoimmune disease but I’ve learned I can alleviate symptoms by reducing inflammation triggers. Daily yoga, exercise, vitamin pills, meditation, fresh air, quiet time, flawless nutrition, rest, joy and quality sleep are the weapons I wield to counter autoimmunity. I am gluten free, dairy free, meat free, alcohol free; despite my love of all of those things. Most of the time, I dominate the battle. Eighty per cent of the time I live my days as a strong high five in the air; twenty per cent of the time I am a limp handshake. I am vulnerable to the subterfuge of my invisible condition.

But I am the girl who runs up mountains,

sights set on the peak.

The response from those who don’t experience chronic fatigue or illness is often disparaging. Even some medical professionals mock that of which they are ignorant- Fibromyalgia and chronic fatigue are often dismissed as psychological, attributed to laziness or self-perpetuated depression, although I do understand how difficult these conditions must be to grasp. My loved ones are perplexed as to how I can be hopping over hills one day and unable to take the bins out the next. It’s complex. Often an autoimmune assault comes out of nowhere making my head spin and leaving me feeling woefully vulnerable. Sometimes an attack is inadvertently self-inflicted, if I let my guard down by being careless with my diet, or too busy burning the candle at both ends. Then inflammation and fatigue flood over me taking full advantage of my complacency. Either way, it is mostly incomprehensible to others, many of the symptoms hidden from view. To all who suffer from autoimmune disease and the incapacitating exhaustion that frequently visits: you are visible to me, and I write this to make life with autoimmunity visible to those who cannot comprehend.

For I am the girl who runs up mountains,

and break through the clouds .

People with autoimmune conditions now face the unexpected challenge of navigating their health through a global pandemic. Fear and caution have come to the forefront as we shield our way through Covid times. For me, even mild viral infections can have a significant impact on my health as I struggle to recover, taking longer than most. Even the side effects of the AstraZeneca vaccine stole two weeks of energy from me. I’m not convinced that Covid and I would get on too well if we met. I will not scare but I will remain aware. Despite my lurking illness, I have never been so content and well, I’m now living my best life as a result of my diagnosis. My focus on well-being in recent years has reshaped my world in the most positive and wonderful ways. Most of the time I am a picture of strength and good health. Most of the time I am bursting with energy and exuberance. Most of the time I am making incredible use of my time, finding joy and intrigue in daily life, learning, loving, living well. Most of the time I am the girl who runs up mountains. All of the time, I am grateful to be in the arena.