Why Living with Lupus is Like a Scavenger Hunt—Part 2

Finding my Tribe

It’s not easy to find support for a rare disease like lupus. But I have a few close friends with autoimmune conditions, and there is nothing quite like the breath of fresh air that is a friend who gets it. When they describe the sensation of brain fog and I say, ‘Oh, thank God—I thought I was the only one,’ it does good to my spirit and soul. When one lives with a rare disease that virtually no one understands, that camaraderie means everything.

I have found an online community of chronically ill people who ‘get it’ too. It’s so cool to reach out to people from all over the world and share similar experiences, vent about the challenges of lupus, and get support. Because as hard as it is to live with chronic illness, it’s even harder to do it alone. A tribe makes all the difference.

Even people who don’t necessarily ‘get it’ can be a source of great comfort. Caring and empathic friends have been there for me during various flares, driving me to hospital, sitting with me during horrible medical tests, going shopping for me and praying for me.

As a lifelong perfectionist, it’s been hard letting people do things for me when I’m feeling useless and vulnerable. But just as I experience joy in giving to others, so others experience joy in giving to me. Perhaps I need to get better at receiving every once in a while.

Day-to-day survival

Sitting in a hot office. Climbing a flight of stairs because the lift is out of order. Making an extra stop on the way home. Working late to deal with a crisis.

These are all things that can trigger a lupus flare.

My scavenger hunt has me on the lookout for ways to deal with these triggers, and I have found some gems. I take breaks and walk around. I go slowly. I find outlets for stress: music, cups of tea, sitting by the ocean. I take photos of beautiful things and look at them. I play video games and write fantasy stories. I read. I eat a lot of chocolate. I cuddle my gorgeous furbaby.

One of my biggest saviours has been pacing. I feel better when I listen to my body, pay attention to the early warning signals of fatigue or pain, and rest. It’s not always easy to listen to my body though. When I’m in the middle of something I want to finish it, pain or no pain. Listening to my body can be costly. But you know what? Not listening to my body is even more costly.

Pacing also means stopping before I feel tired. This feels counterintuitive; after all, if I have energy, I can keep going, can’t I? No, I can’t. I need to stop before I feel it. I need to stop without feeling guilty about said stoppage. Because I have learned that if I push myself, it only affects one person (me).

Take that, perfectionist.

The other thing that constantly rescues me is humour. You know the saying, ‘If I don’t laugh, I’ll weep’? Yeah, that. I use a lot of dry humour and sarcasm to cope with lupus. Just the other day a doctor told me I needed surgery and that the operation would increase my risk of arthritis. My reply? ‘Terrific!’

It helps to laugh at the absurdity that is life with chronic illness. I laugh at new diagnoses and tell the doctors to ‘Put them on my tab.’ I laugh when I can’t move, because it is ridiculous for a person my age to be immobilised. I laugh when doctors say, ‘It could just be anxiety.’ My dude, I know what anxiety is. This is not my first day.

We have to find a way to deal with the plot twists of chronic illness. Laughter helps me keep my head above water when I might otherwise drown.

Mental Health Fallout

Being depressed by chronic illness is a thing. Feeling anxious about the chronically ill life is a thing. Wanting to escape this chronically ill life by ending it is also a thing.

And being traumatised by illness and medical treatment is totally a thing.

I have been so disabled by illness that I could not see the light at the end of the proverbial tunnel. I have been terrified, overwhelmed, helpless, hopeless. There are times when not even my faith has helped me.

My tribe has come to my rescue at these times. I may not have had any hope left, up a certain creek without a paddle, but their hope coupled with love for me has buoyed me up. I have sent up flares (the other kinds of flares) and sought professional help. Because living with chronic illness is ludicrous. We simply cannot do this alone.

I write about chronic illness partly to help myself, but partly to offer solidarity to others, because I can’t be the only one with these experiences. If you have experienced these things too, please remember you are not alone. And when I run out of words—it doesn’t happen often, but it does happen—I turn to music. Ah, the blessed relief of playing without explaining, playing for sheer pleasure, playing for expression, playing for escape. There’s something healing about music. Also chocolate.

The other thing that hits me hard is grief. It’s about loss: movement, a pain-free existence, youthfulness, joy, travel, peace of mind, my voice, trust in medicine, faith, relationships, the life I dreamed of, the ability to have children, the ability to work, everything. Grief is great. And it’s synonymous with chronic illness.

How do I cope with grief? I don’t have the perfect answer. (If you find one, let me know.) The main way I cope is by grieving. A lot. I grieve each time I call in sick or go home sick. I grieve when I see opportunities I have to decline. I grieve when I have a flare up. I grieve when I receive bad news: a new diagnosis, a limit to treatment, a need for surgery. I grieve all the time for the person I used to be, the children I wanted to have, the life I wanted to live.

Even though my life is filled with blessings—work, loved ones, music, writing, a beautiful furbaby, plentiful supplies of chocolate—and even though I am grateful every day, life with chronic illness is hard. It just is. I will probably grieve for the rest of my life. And that’s OK.

Want to hear more scavenger hunt tips and gems? We’re finishing up the series next week when we’ll talk about faith and the greatest prize of all. In the meantime, how has chronic illness affected your mental health? Are there losses you still grieve? What difference has support made in your life? Share your story. Let’s have a countercultural conversation.

If this article has triggered any concerns for you, please reach out to Lifeline (13 1114) or Beyond Blue (1300 22 46 36). Your mental health matters. You matter.