By: Angelica Heidi Brehm
When I was a child, I was often told, “Life isn’t fair!” I think the intent of the comment was to provide me some comfort while dealing with life’s hardships or to connect me with the rest of humanity, who were also experiencing difficulties. The result, however, was a feeling of deep despair. I felt sucker-punched and like my life force had been pushed out of my body. I hated that feeling.
That’s why I was so relieved when I discovered Charles Swindoll’s quote, “Life is 10% what happens to you and 90% how you react to it.” So what if life was unfair? I didn’t have to be sentenced to a hard life because what really mattered was how I reacted to it. I made the quote my motto and life was good. Until it wasn’t.
My migraine disease, which had been episodic, became chronic when I was 25 years old. Over time, the severity and frequency of my symptoms grew and grew until I was no longer able to work and my social life was severely impacted.
My circumstances were hard and I couldn’t find a positive way to react to them. My life felt like 10% struggling to eat, sleep, and clean and 90% migraine pain, discomfort, and depression. Adding insult to injury, according to my motto, the fact that I was unhappy was my fault because of how I was choosing to react. I wanted to be more positive, but the difficulty I had completing tasks was real and it was becoming more and more prevalent. I knew I was trying my hardest so I sought support from family members, peers, and therapists who could help me do better.
Adding insult to injury, according to my motto, the fact that I was unhappy was my fault because of how I was choosing to react.
When I finally found a therapist who was a good fit for me, I explained that everything was much more challenging than it had been when I was healthy. Things that I thought would take one step, like filling a prescription, took several involved and exhausting steps. Things that I thought would take a bit of effort, like finding affordable housing, ended up being so complex that they didn’t seem possible to achieve. I had no idea that becoming a person with chronic migraine would make me feel like a circus performer who specialized in jumping through hoops. The tasks were supposed to be as feasible as I expected them to be, right? They always had before. Week after week I shared some of my expectations and described how what I had encountered was so much more difficult.
- I expected that my primary care provider would be capable of treating my condition.
- I expected that my employer, coworkers, friends, and family would recognize my disability and accommodate my new needs.
- I expected that I could push through the pain and still do the things I had done before.
- I expected to feel supported by local specialists and for them to be willing to fill out disability-related paperwork and lobby on my behalf to get me access to treatments.
- I expected that I could will my depression away.
- I expected that the medication prescribed to me wouldn’t cause terrible side effects and actually cause my disease to worsen.
- I expected to quickly get an appointment with a headache specialist who would have tools and tests to perceive my triggers and symptoms so she could “fix” me with a magic pill.
Unfortunately, those expectations were not based on reality. At least, not the reality in which I lived. My therapist helped me to eventually see my pattern of undertaking a task with an expectation of it being feasible and then feeling sucker-punched when unexpected steps were added. I would struggle to complete them only to have more and more difficult steps revealed. We agreed that this pattern wasn’t working for me. I didn’t feel well enough to do the things I needed to do to feel better. I was 10% hopeless and 90% exhausted.
With more of my therapist’s help, I was able to eventually accept that most of the tasks in my life would not be simple. They would be arduous and after I completed a step, an unforeseen difficult step would often be uncovered. This realization led to my revised expectations.
- I expect that migraine is a disease that can be managed, but not cured, at least not yet.
- I expect that my disease causes disabling symptoms and sometimes they sideline me from all activity.
- I expect that some of the providers I visit will not be capable of giving me the care that I want and I need to be prepared to travel to see providers who are a better fit.
- I expect that some of the people in my life will not be willing or able to accommodate my needs and that some of these relationships will dissolve or evolve as a result.
- I expect that, for me, having a disabling and painful illness can be depressing and that therapists, support groups, and antidepressants can be helpful.
- I expect that I must advocate for the care, support, and accommodations that I deserve.
- I expect that getting appointments with specialized providers is challenging, that I need referrals, the proper insurance, I have to fill out paperwork, order and send my medical records, and there are long wait times, but when I’m persistent, I will get appointments.
- I expect that I am responsible for my health and, when possible, for using tools appropriately to reduce my triggers and symptoms. My providers are there to support and guide me, but they aren’t empowered to fix me.
- I expect that keeping a record of my experiences with migraine and sharing that information with my providers helps me receive appropriate care.
- I expect that it will take time and energy for me to monitor and manage my status with Social Security Disability Insurance, Medicare, health insurance companies, and assistance programs.
- I expect that being a person with migraine requires jumping through hoops; many, many, hoops.
My life is still hard, but now it feels feasible, predictable, and even full of joy and hope. It is amazing how having reality-based expectations has enabled me to return to feeling like life is 10% what happens to me and 90% how I react to it.
If you are struggling and feeling defeated, reconsidering your expectations may just be the cure.
About Angelica Heidi Brehm
Angelica “Heidi” Brehm lives in the San Francisco Bay Area. She developed migraine 28 years ago and has since experienced varying degrees of pain and other disabling symptoms. When not managing her disease, Heidi enjoys hiking and volunteering, including as a U.S. Pain Foundation advocate and ambassador. Though her life has been impacted by chronic pain, participating in advocacy, taking part in educational events, such as USPF’s webinars, and connecting with peers have helped her find new purpose, hope, and joy.