Between Wellness and Pain: Finding My Place
What is a Chronic Illness Community?
The chronic illness community, to me, is a gathering space for people living with long-term health conditions. It’s where stories are shared, where being seen matters, and where you don’t have to pretend everything is OK. Living with a chronic illness can be very lonely and isolating; being part of a supportive community can mean the world to someone who is dealing with life-altering conditions.
My Journey: Where I Fit, Where I Don’t
My experience with chronic illness has been a bit different than others’ experiences. Ankylosing Spondylitis is a dynamic illness. Most days, I wake up feeling surprisingly good. I can move around the world with ease, keep up with my children, accomplish goals, and I may seem “normal.” But there have been times when A.S. pain has grounded me completely:
I’ve collapsed randomly, and in public (so embarrassing!)
Yearly I deal with multiple episodes of iritis and gastritis
I’ve had neck immobility due to cervical facet syndrome (where the small joints between the neck vertebrae become inflamed)
My right elbow and shoulder are always in a state of semi-inflammation (I visit my PT twice a month for this)
Confoundingly, I’ve actually run races - as in RUNNING - and sometimes even finishing 1st or 2nd in my age group, but this past year even a short jog has been rare because of pain from sacroiliitis and piriformis syndrome
Mornings can often be their own ritual - sometimes I have to stretch just so I can feel like I’m standing mostly straight. Sleep can be elusive, and during the day brain fog settles in. On the outside, I might look fine. But inside, I carry what most people don’t see.
I also live a life that does not always fit the expectations of chronic illness spaces. For example, I am a craft beer blogger, and I enjoy drinking in moderation. For me, it feels balanced and joyful. Yet in many chronic illness communities, alcohol is off-limits, and that can leave me wondering if I truly belong.
Where It Gets Hard Online
I scroll through community spaces and see pain, yes. But I also see something else: a sharpness born from long suffering. A distrust of anyone who talks about healing. An impatience, comparison, and often deep grief.
I understand that grief. I understand pain. But what hurts is how quickly stories of hope can be met with something like, “They just don’t know our version of suffering.” Or, “How dare they suggest lifestyle changes when I can’t.” Or, “That simply wont work.” I have been there too. I know those thoughts. Knowing my experience might cause others to react negatively, I often hesitate to share what has worked for me.
My Choices, My Healing
If you’re still reading, thank you. What follows is a list of what has helped me, not perfectly or permanently, but enough that I can feel the difference:
Changing my diet. Not as a magic cure, but as a steady shift toward reducing inflammation.
Moving from chaos to simplicity: working from home, less traffic, more nature, less noise, more minimalism, and more breathing room.
Setting boundaries, especially with family. Distance from toxicity has cost me guilt, but it has also given me peace.
Learning what my body needs: rest, movement, gentle stretching, knowing when to stop, when to push, and when to protect.
These things did not happen overnight. Sometimes I tried and failed. Sometimes I slipped back. But each time I got up again, I learned something.
Why I’m Between Two Worlds
Sometimes I share what works for me. Sometimes I pause because I know the story may trigger someone’s grief, or feel like a comparison. I am neither fully inside nor fully outside the community. I walk that in-between space.
I want to be real, not perfect or preachy, but open. Vulnerable. Because authenticity is the kind of connection I long for. Maybe someone reading will remember: you are not wrong for trying, you are not weak for resting, you are doing the bravest work just by being alive with this.
What I Hope For
That those who are hurting will feel seen, even in their worst moments.
That those of us who have found glimmers of relief can share without fear of being judged.
That we stop measuring healing by someone else’s standard, but by our own steps.
That kindness becomes our first response in the chronic illness community.
So if you feel like you don’t belong because your illness has invisible days, or because your victories are quiet, you do. You belong. Your story matters. Your healing matters. And so does your presence.