‘Find your tribe,’ they say. But how do you find your illness tribe—especially when your illness is rare?
My particular brand of illness, known as lupus, apparently affects approximately 0.06% of the population and five million people worldwide.[i] So it’s not like I’m going to find many fellow ‘lupies’ at my workplace or local church. Good help is so very hard to find.
Yet we all need support, don’t we? We all struggle and feel alone. Those of us with chronic illness don’t have many spare spoons with which to search for our illness ‘tribe’. And therein lies the difficulty. How do we find and support one another while we are drop-dead exhausted, brain fogged, riddled with pain and plagued by depression and anxiety?
If you have an answer, I’m all ears.
How do we support one another while drop-dead exhausted, brain fogged, riddled with pain, plagued by depression and anxiety?
Once, a well-meaning person suggested I start my own support group. I laughed in their face. It was a worthy idea, don’t get me wrong, but I was unsure where I would get the spoons for that—perhaps from the magical spoon store? No, I needed alternatives to starting up my own enterprise.
As far as finding my tribe goes, here is what has worked for me (so far):
– Online tribes. There is not a lot of support online for a rare disease, but there is some, and it’s better than nothing. There are various online forums where you can share problems and swap notes with fellow lupies or those living with chronic pain or fatigue (these groups are often easier to find than disease-specific groups).
– Friends with chronic conditions. For some unknown reason, I seem to attract close friends who also have chronic conditions. None of them have lupus—I am alone on that island—but they have a colourful range of autoimmune conditions, and I find I resonate with much of their experience. If you find people with conditions as complex and impactful as yours, you might just have found your tribe.
– Carefully selected care team. I have gone to great lengths to form a supportive tribe of doctors, specialists, and other healthcare professionals. This has involved much research (primarily meeting bad doctors and subsequently firing them) and assertive communication on my part. When I find doctors willing to listen, believe me and think outside the box, I hold on to them.
– Counsellors. As a counsellor myself, I have sought counselling (apparently counsellors are not immune to mental distress) from private and helpline-based therapists. You know what? It takes the edge off. It reminds me I’m not alone and that while many things are outside of my control, there are still one or two things I can do about it. That’s helpful.
– God. This one might sound weird since God doesn’t have lupus or a chronic condition. But God understands pain. Jesus, who endured the cross, understands what it is like to have your physical body ripped away from you. He knows how pain can affect you emotionally and spiritually. He’s been there—and he wants to be there with you too, right beside you. Tell him how you feel. Or don’t talk at all; just sit with him, knowing that he feels what you feel and cares deeply for you.
Illness can be profoundly lonelifying. But there is help to be found. The support of others can make all the difference. While it can take some digging (kinda like mining for a diagnosis), when you do find someone—or a group of someones—who gets it, that’s like landing a goldmine.
Do you have an illness ‘tribe’? Do people around you ‘get it’, or do they struggle to understand and support you? Is there anyone you can talk to about how you’re feeling right now? Share your story. Let’s have a countercultural conversation.
[i] https://www.lupus.org/resources/lupus-facts-and-statistics