Living & Learning with Chronic Pain

Gillian Howell is our Program Coordinator for SOLVE (Sharing Our Lives, Voices, and Experiences), which is a mental health stigma-elimination speakers bureau. Gillian shares the lessons of managing mental health challenges and chronic pain.

I am thrilled to return to my role as your Program Coordinator. In line with SOLVE’s values of bringing stigma to light, I would like to share a recent story.

I have been away on medical leave due to a diagnosis of Chronic Migraines. For months at a time I had a headache or a migraine every day. Prior to April 2017, I had never experienced this level of chronic pain and didn’t know its psychological effects. 

It was debilitating and emotionally draining.

I am grateful for having experienced mental health challenges prior to my new medical diagnosis. Through my struggles with anxiety and depression, I developed coping skills and knew the importance of reaching out for help. My foundation of tools and strategies gave me a head start on knowing how to cope with the stress of being in pain, but there remained a lot to be learned. 

I sought a holistic approach to exploring treatments. I tried many modalities before figuring out what helped me best—very similar to my mental health wellness path. I met with doctors who I didn’t connect with and others who were a better match.

I experienced structural stigma based on my mental health history of anxiety and bipolar. I saw a doctor early on in my treatment to ask for a referral to see a neurologist. The doctor was dismissive of my symptoms. He said things along the lines of: “It’s probably stress related, and it’ll go away if you do some deep breathing” despite my headache journal data. He practically told me not to worry. I felt completely ignored and not taken seriously. 

I experienced public stigma. It was very likely tied to my mental health and anxiety as well. I was talking with a close relative, and they commented that I was canceling too often. They did not consider my migraines a legitimate reason and implied my anxiety was making me unreliable. I had been making such a concerted effort to be a part of life despite my chronic pain that this admonishment felt like they were saying I was “lazy.” 

I also experienced self-stigma. I internalized the comment from my relative and felt shame. My thoughts unraveled: Am I not trying hard enough? Am I lazy? I was able to get out of this downward spiral through discussing these instances of stigma with others.

I needed a community. I found a peer-led chronic pain support group and I enrolled in an eight-week pain management skills course that covered mindfulness and tools specific to coping with the stress of chronic pain. I was able to contribute my own set of skills to the group based on my lived experience with mental health challenges, as well as my professional background. I also learned a great deal of new content. I explored ways in which to have healthy conversations surrounding pain with loved ones. I learned skills such as “pacing” my time, cognitive reframing, and relaxation techniques to live with these headaches.

With my anxiety and panic, I decided a few years ago that fighting it and pushing it away didn’t help. I was instead going to DO daily life WITH that anxiety and have tools to cope. I had to do the same with my migraines. I want to have a full life, whether I’m in pain or not in pain.

How did this play out? I wrote a third draft of my novel (slowly). I returned to reading books. I stayed active by walking my dog (Sammy!) and intermittent yoga. I called my friends. If the pain level was too high, sometimes I did have to cancel. Other times I got to hang out with my friends. And now, I’m back at work.

I’ve found treatment that works, but it’s not foolproof, so I rely on my coping skills and support network.

I am grateful for you and your dedication to SOLVE. Let’s continue the fight to end stigma.