I was asked by the curator of “Pain Talks” what turning points led to my current understanding, perspective, and treatment of chronic pain. The following is my response:
In thinking about turning points in my life, it only makes sense to describe them in narrative form. The context and order of events dictate how I have come to understand my pain.
First, several turning points came as a result of major failures. Prior to my headaches becoming chronic, I was a high achieving student, independent and ambitious. I graduated college in 3 years, rode a bicycle across the USA for charity, and was about to begin study at one of the country’s best graduate schools for landscape architecture. But during the summer before graduate school, my headaches became chronic (15+ days a month). Instead of preparing for the worst, I shrugged off the warning and continued with my plans. No matter what, I would make it work.
In the first few months of school the headaches turned from chronic to daily, as I was under an immense amount of stress. Some weeks I was in studio from 8 am to 2 am and slept an average of 5 hours a night. I had developed GI issues in addition to headaches and back pain. Before the semester ended, I saw an exceptional neurologist and he told me simply that if my condition was to improve I had to change my lifestyle. He said something along the lines of, “I could give you all the medication in the world but if you don’t sleep more and eat well you will still have headaches.” This encounter forced me to face the reality of my health condition and the lifestyle I was living. I made the extremely difficult decision to drop out after one semester, and for the first time in my life I did not finish what I had set out to do.
In December I moved back in with my parents, depressed and debilitated by pain. I had the first of many visits with a neurologist specializing in headaches and joined the ranks of many other unemployed chronic migraineurs. Visits with this neurologist left me feeling hopeless and sad. I waited 3 months between visits and came to each one armed with a list of questions, only to be given vague and useless answers or be scolded for my seemingly candid view of the situation. One time the doctor chided me, “You have a disease. Migraine is a disease and there is no cure!” I left his office and burst into tears on the street.
During this time I became obsessed with finding a solution to the pain, and was constantly researching and trying different things. I dabbled in mindfulness, did yoga, and exercised obsessively after discovering that exercise yields a couple hours of reduced pain. I learned biofeedback, which helped me feel much more in control of my stress reactions and helped me understand why stress leads to a headache. (Side note: learning about stress was a HUGE factor in helping me understand migraine and chronic pain. For years it was this intangible thing that everyone talked about but I could not comprehend. People would say “you hold stress in your shoulders” and I would just shrug and say, “okay, I guess…I can’t really tell.”) Coincidentally, around this time my neurologist put me on the last preventative drug I would try before Botox. It worked wonderfully, and pretty soon I was “back to normal” with only a few headaches a month. I spent the months after graduate school trying to find a new career that I would find stimulating and build on the design skills I had already learned, while hopefully not resulting in as many headaches as before. This brought me to the tech world, and I enrolled in Startup Institute for product and design.
Fast forward ~9 months. I am interning on a design team at a startup, enjoying the work, and getting into the swing of a new profession and field. The internship ended and I took a full time role on another team at the same company. The new job was much different than design, and I was out of my comfort zone. I was pressured to learn the product quickly, and found the day-to-day tasks to be extremely boring and tedious. Of course the migraines came back to daily, and I refused to take a day off because I was afraid of being judged by my new boss. It didn’t work. I was let go a month after taking the new job, and had a continuous migraine for the last two weeks of my employment. Failure #2.
Once again, I found myself feeling totally defeated and in constant pain. Losing my job was not really a shock — I knew it was coming — and I actually felt relieved because the pain I was experiencing made full time work nearly impossible. Friends offered to help me find another tech job, but I turned down their offers because I had learned that staring at screens every day would only bring more headaches. I sold most of my belongings, broke my lease, and once again moved back in with my parents. This time I knew I couldn’t make the same mistake twice and was determined to find a profession that I actually could do with migraines. Before any of this could happen, though, I had to learn how to manage the headaches. I promised myself that from now on, migraines would be #1 before anything else in my life. This still holds true today.
Even at my parents house, I could only keep minimal social commitments, and often had to cancel plans last-minute when a headache wouldn’t let me leave the house. I spent most of these months inside, connecting with friends over the phone and through social media. I left the house every so often to accompany my mom to the grocery store or on another simple errand. Even driving was too much for me to manage, and I was grateful for my mother’s help and understanding. I have one very clear memory from this period. It was the first time I was able to sit outside on the back porch and feel the sun on my face after spending days inside and in bed. That little bit of freedom and happiness meant the world to me, and I remember it still when I am at my worst moments.
During this time I also started receiving Botox injections for migraine, since I had finally “failed” enough preventative medications. After the first treatment, I had a full 10 days headache-free. The experience of going from months of straight headache to days without pain was unbelievable. I had forgotten how wonderful and easy pain-free life had been. But when the headaches returned, I was just as quickly thrown back into a living nightmare. I sadly accepted my disability as reality, and waited the 2 months until my next treatment. While waiting, I continued exercising as best I could, and consumed all the migraine literature I could find. One day my mom returned from the library with a book called, “The Migraine Miracle”, where the author, a neurologist, totes a low-carbohydrate diet for pain relief. He supported it with evidence from scientific literature, his own life, and the lives of his clients with similar headache profiles (less than chronic). Since my headaches were chronic, I considered the more extreme ketogenic diet. Afraid of trying something without knowing its potential consequences on my health, I spent several days reading research about the effects of a ketogenic diet on other neurological conditions and it’s potential for use with migraine. I also learned that the diet is successfully used to treat and control other chronic diseases like diabetes and epilepsy, and that many people have been eating this way for years with no documented long-term health issues. I made the decision to try it, telling myself that even if it shortened my life, headache relief in the years I did live would make it 100% worthwhile.
The diet ended up working and my life took a major turn for the better. In my continued search for a new profession, I found Occupational Therapy (OT). I was able to enroll in community college to complete prerequisite coursework, work part-time on the side, and continue migraine treatments.
Another major turning point came in the form of chronic pain self-help books and cognitive behavioral therapy (CBT). The best book I read was “How To Be Sick” by Toni Bernhard, who has chronic fatigue syndrome. I highly recommend it if you want to understand the experience of pain. Around this same time, I began CBT with a therapist at the Beck Institute. This also changed my life. One thing she really helped me grapple with was the sadness I felt at no longer being able to work to my full potential and tap my ambition. I was depressed at having to give up two potentially awesome careers and the friends and communities that came with them. She was the first person to tell me, “it’s okay to mourn your loss of the life you once had.” And that really changed my perspective. It had never occurred to me that I was in mourning, but I was. It had manifested as frustration and sadness, and I was finally able to understand those feelings.
As you know, chronic pain comes with a lot of mental health issues. In addition to feeling immense sadness and frustration, I was also anxious and fearful. Feeling like anything I did could make the pain worse led me to overthink and worry about “what-ifs”. The CBT helped a lot with this, and I started to accept an alternate reality. Prior to this point my options were: “do everything” or “do nothing”; i.e. work full time, live independently, and do everything I wanted to do OR live with my parents on disability. I started to explore the gray area between these two extremes, and decided that I’d be happy to work part-time, live with or near my parents, and sacrifice some of my social commitments and leisure activities. Finding this middle ground — and being happy with it — was a huge turning point!
The final turning point occurred when the last preventative medicine I tried wore off after less than a year, sending me back to a completely pain-filled life. I realized that instead of focusing on living without pain, maybe my “normal” state was actually a life with pain, covered up by the medicines I was taking. Although this may sound counterintuitive, and it’s probably not true, it helped me flip my mindset from striving for no pain, to accepting the pain as it was and being happy for every break I could get.
Most people I see every day have no idea what I’ve been through and how grateful I am to be where I am today. When someone inquires about my diet, I tell them frankly that without it I wouldn’t know them, or be in school, living independently and disability-free. Even after I say this, I can see the gravity of my statement has not fully sunk in.
I am very grateful for the support of my parents, my friends, employers, classmates, professors, and all the other people in my life who understand.