Coping | Daily Life | Disability | IBD
It’s been about six years since I became chronically ill. For the first few years, I was really interested in sharing and educating others. I wanted to be involved, to find community, and I did. I joined the Girls With Guts pen pal program and the Portland Crohn’s and Colitis Foundation support group, eventually becoming a blogger for Girls With Guts and Co-Facilitating the Portland Support Group. I posted frequent medical updates on my private Instagram page, chronicling the neverending appointments, procedures, and medication trials. Throughout all this, I got diagnosed with OCD and PTSD, and, eventually, I shared about my mental health struggles too–I was more guarded with the mental health stuff, but sharing released some of the weight of everything, connected me to others with similar (and different) experiences, and allowed me to contribute by educating people about my conditions.
During this time, I worked at the disability office at the university I went to while getting my Masters of Social Work. Much of my day-to-day work involved meeting with and supporting students, many of whom had some of the same physical and mental health conditions as I did. Though I didn’t talk much about my own experiences with the students I worked with, my work was another point of connection and community for me, especially during the earlier days of the pandemic. I learned about ableism, accommodations, disability rights, and how to advocate for myself and others. I thought I had come to a place of acceptance about my chronic illnesses.
Then, about a year or so ago, something shifted. I think it was shortly after my diagnosis of Chronic Migraine–a chronic illness that involves 15 or more headache days per month, among other symptoms–when I just stopped sharing. Maybe it was the brain fog from having migraine attacks and debilitating head pain everyday for months, or maybe it was the exhaustion of having yet another major chronic health condition to adjust to while simultaneously trying to adjust to the ever-changing landscape of the pandemic. I had contorted myself and my life in so many complex ways to meet the endless needs of my chronic illnesses, and I was exhausted.
The reality of the chronicity of my chronic illnesses hit me hard after my diagnosis of Chronic Migraine. Even with my Crohn’s in remission, I was still sick, and that devastated me. Since I had completed my MSW, I left my job at the university and took a flexible very part-time job working for a small non-profit. I enjoy the work and find meaning in it. But my inability to work full-time because of my illnesses and the financial consequences of this has been heartbreaking, and has left me with a lot of shame.
That shame, along with the devastation and trauma of ongoing chronic illness, has taken a heavy toll on me this last year, and I’ve struggled to find the words to share about my experiences. I can’t find the gratitude I once clung to. Any curiosity and hope I used to feel about new treatments and tests has been replaced by exhaustion, dread, and traumatic memories. And, perhaps worst of all, I can no longer seem to conjure any meaning from my experiences. I have always found the physical and mental anguish of chronic illness to be miserable, but I used to be able to create meaning and connection out of the experiences I was having. These days, it seems that the piece of my soul that could create purpose and find the richness in painful realities has gone offline. I just feel so burnt out and more bitter than I care to admit, and I don’t know what to say about any of that.
Mostly, I don’t say much of anything about my health anymore. I have stopped sharing updates on my private Instagram page. I have stopped attending the Crohn’s and Colitis support group. It has become harder for me to write blogs. I postpone medical appointments and put off my labs as long as possible. I change the subject if anyone asks about my health, and I just cannot find it in me to educate anyone about my illnesses anymore. During mental health appointments and calls with my case manager, I am often quiet, shutdown, lost in the land of medical trauma and OCD, and shame.
I wish I had a neat little bow to tie up this blog with. I wish I had some sort of answer, some solution. “Do you feel disconnected from yourself and others as a result of your chronic illness? Follow steps X, Y, and Z to feel normal again!” I wish it was that easy. I think, as chronically ill people, our survival requires us to carry so much. We carry the physical pain and symptoms of our illnesses, we carry the failures of a backwards and buckling medical bureaucracy, we carry the burden of having to explain ourselves wherever we go to people who cannot fathom our reality, we carry other people’s pity and judgements, we carry the financial devastation of being ill in a society that demands wellness, and we carry the emotional pain of grieving what we have lost. Sometimes I think our bodies are just enduring so much so fast that our brains can’t keep up. And so we go offline for a while, our internal reserves shutting down under the weight of it all.
I do believe there is more to life with chronic illness than hopelessness and trauma. I do believe that we can have healing and joy, even amidst ongoing illnesses and sickness. I do try to end all my blogs with a sense of community and a bit of hope. But sometimes community and hope look different than we think they “should.” Sometimes community and hope look like honoring and accepting the emotional experience you are having, even if it is painful and you wish it were different. Sometimes, community and hope look like allowing yourself to feel the heartbreak, shame, anger, and whatever else your chronic illness has brought you, without feeling that you have to hide that experience from your community. Wherever you are in the emotional highs and lows of your chronic illness journey, you belong here, even if you are struggling to engage. Especially if you are struggling to engage. I may not have a simple answer for how to get out of the depths of chronic illness despair–no one does–but I do know we are never as alone as we feel.