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What It’s Like Living with Lupus

An “invisible illness” that changes everything

Art by Jessica Siao

If you saw me now, you wouldn’t think I was ill. I don’t look ill. I have an “invisible illness” called lupus.

It’s hard to convey to people how I’m feeling and what the practical consequences are. Writing this is painful. I feel stalked by shame when I have to explain why I can’t go out in the evening because I’ll be overcome by fatigue, or why I can’t sit in the sun because I’m photosensitive and the sun makes my joints ache.

Lupus is an autoimmune disease, which means that your own immune system attacks your body — potentially every bit of it — causing widespread inflammation. It can affect your joints, muscles, skin, and internal organs. Before medical treatment was available, lupus was often fatal within five years of diagnosis. My aunt died of it, and I was ill for some years before being formally diagnosed in March 2017.

This afternoon, I’m contemplating the bruises on my legs, the latest manifestation of my malfunctioning immune system. In December 2017, I was diagnosed with antiphospholipid syndrome, a blood-clotting disorder that rapidly escalated the urgency of my previous lupus diagnosis. The bruises aren’t because of the disease, which just causes clots and strokes and whatnot. The bruises are about the anti-clotting medication.

They appear from nowhere. The other day, I was quietly writing and a huge welt came up on my thumb. I did nothing to provoke it, but there it appeared, red-brown and glowing.

Having an autoimmune disease is like Russian roulette.

I started to panic — was it going to spread? I got up to make my lunch and thought there’s not much point in overreacting; I have a shortened lifespan anyway unless I can battle this thing into remission. Having an autoimmune disease is like Russian roulette. One day you could be fine, and the next, for no discernible reason, you could go into decline. You are dragged into a game of chance. Might as well eat. Then I picked up my eight-year-old from school and we went to the park.

This invisible disease has changed my perspective on life — if by “life” one means the possibility of imminent death. Most of us struggle to accommodate the endgame, and I’m no exception. I reach for answers in the throes of denial. Only occasionally do I grasp the significance of my situation, which is that I have a disease that threatens my life every day.

Today I’ve got two bruises on my left ankle and one on the right, plus some small bruises behind my knees and one on my hip. That’s in addition to the pain I have in my knees, and the headache, neck pain, fatigue, and brain fog that is caused by the lupus.

Sometimes people ask me what fatigue is. We Lupies often laugh at how the word feels when you say it and whether it adequately explains the symptom. Because lupus, like all autoimmune diseases, leads to the kind of exhaustion you feel after several months of looking after a colicky baby. Some days it feels like the worst hangover you’ve ever had, but one that never goes away.

I’ve been relatively lucky. I’ve always been able to get out of bed, though pre-medication I sometimes couldn’t walk right away. I can go out, do some work, get the shopping done, play with my kid, and put her to bed. I’m done by 8 p.m., or 9 p.m. if I’m lucky. That’s my day. Sometimes I can’t do all those things, so the priority is something like this: kid, work, other stuff. I’m really too tired to care if the house is a mess, not that it was ever important to me.

At least I can think intellectually and write. Brains are remarkable things, and some parts function even when all else fails. But tasks like paying bills disappear into the haze of time.

It’s probably just as well that some kind of mental hobbling accompanies lupus, because if I were my former lively self, I’d be excessively irritated by my condition, as opposed to just fairly irritated. Or bitter and angry. But no — I am perennially chilled and vague. Which is just as well, because I also have adrenal insufficiency.

My adrenal glands, the ones that make all the stress-relieving hormones, aren’t really working. The doctors don’t yet know why. It could be the steroids, the lupus, or something else. So now my body can’t handle stress, because it’s not producing cortisol. That means I mustn’t be exposed to any arguments, or people being mean to me, or overwork, or even just excitement. And no viruses, either. All those things highlight the fact that I have barely any cortisol to fight stressors on my body. A lack of cortisol can be, you guessed it, life threatening. And if the doctors and I can’t wake up my adrenals, I’m on medication for life.

People have different ways of coping with chronic illness. Some people see lupus as an external attacker, but I prefer to think I did it to myself. Somewhere along the line, I broke myself, which, self-torture being my noose, is an idea that I like. Too much striving, too much living on the edge, too much stress. Yet despite the consequences, I wouldn’t change how I lived my life. It is who I am, so this disease is who I am too.

How we cope with disease tells us a lot about ourselves and can, I think, influence outcomes. Is my particular version of personal responsibility helpful because it gets me out of bed every day? Is feeling like a passive victim of a disease better? I have no answers. It depends.

Too much striving, too much living on the edge, too much stress.

When I tell people I have an autoimmune illness, the reactions range from revulsion (some people are totally freaked out by lupus and believe it’s contagious) and overcompensation (too much sympathy and attempts to absolve me of responsibility). I don’t blame them, because it’s hard to get it right. But both responses rob Lupies of their autonomy. And autonomy is part of self-care — something the medics often forget when they focus on the emergencies rather than quality of life.

Ultimately, living with autoimmunity is like any life-threatening disease, in that it’s a lesson in human futility — a futility that we humans avoid confronting if we can possibly help it. It is what remains of the self when all predictability, control, and hope is removed. We live in the present, taking one moment at a time, and find joy in the corners of our existence. I believe this to be the actual truth of life when all illusion has been stripped away. And, knowing this, I laugh defiantly and begin another unknowable day.

Writer and transformational coach. You can find me at https://www.derivelifecoaching.com/.

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