Embracing the power of many in life with ANCA vasculitis
We didn't choose this disease, but we can choose not to face it alone
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A few weeks ago, I was on a support group call for people with eosinophilic granulomatosis with polyangiitis when someone described how much it meant to be able to talk with other people in the same situation, and my friend responded, “It’s the power of many.” I have not been able to shake it since. It was a beautiful statement about the benefits of this community that go beyond words.
It named something I had felt for a long time but never had the words for. Because here is the truth about living with a rare disease: The single most important thing I have done — more than any one appointment, medication, or specialist visit — is reach out to the people who are living it, too.
There is a particular kind of loneliness that comes with a disease most people have never heard of. You can be surrounded by people who love you and still feel that they don’t fully understand what you’re experiencing. Your doctors know the science. Your family and loved ones know you as a human. But the people who know what it actually feels like to wake up with this inside your body are the ones who wake up with it inside theirs.
That is what my friend was pointing to. None of us can carry this by ourselves. But together, we know an enormous amount. We are an incredibly educated and aware community made up of individuals from across the world who share something rare and unique.
The value of lived experience
For me, so much of that togetherness happens in private, disease-specific Facebook groups. I know that may sound small, but these spaces have become some of the most valuable rooms I have ever “stepped” into. They are full of wisdom, the kind that only comes from people who have carried this in their own bodies.
Let me be clear about what these groups are not. No one is handing out medical advice. No one is playing doctor. What people are doing is telling the truth about their own experience, and that turns out to be its own kind of education.
It is in these groups that I have learned how a medication actually affected someone else; not the side effects printed on the pamphlet, but the real ones, the ones nobody warned them about. I have learned how others approach their doctors when they feel they are not being heard, or when they know in their gut that something is wrong and they’re not being taken seriously. I have learned how people sit with the grief, because there is profound grief in a life that has been rearranged without your permission, and how they keep finding ways to make that life better anyway.
That last part matters most to me. ANCA vasculitis does not stay in its lane. In reality, it does not even have a lane. How I wish it did. It infiltrates nearly every corner of life: work, relationships, plans, identity, the simplest daily things. And still, in these groups, I watch people find their footing. Not by pretending it’s fine or slapping on a smile, but by being honest and helping each other take the next step.
That is the power of many. It is not one hero with all the answers. It is hundreds or thousands of us, depending on the group, pooling what we have learned the hard way so that the next person does not have to learn it quite so hard.
If you are living with ANCA vasculitis and have not yet found your people, I want to gently nudge you toward them. Hop onto Facebook. Search for your disease and join a few groups. They each have their own personality. They are all generally quite valuable. Read for a while before you post, if that is what you need. And when you are ready, ask the question you have been afraid to ask out loud. I promise you are not the only one wondering.
I think of my friend’s words almost every day now. We did not choose this disease, but we can choose not to face it alone.
That is the thing about the power of many: It works because we show up for each other.
Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.
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