Chronic migraine has changed me and what I’m able to do. Coming to terms with my diagnosis meant coming to terms with a new way of life.
Not enough people talk about the grief that comes with disability and chronic pain. This is especially true when it comes to invisible illness and invisible pain. A new diagnosis often means grieving one’s old abilities and one’s old, pre-diagnosis life.
My abilities aren’t the same now. I don’t enjoy the same activities. I’m not able to do things the way I used to. My body has different needs now.
It’s especially hard to navigate these changes when no one can actually see the things you’re experiencing.
Honestly, I wish that chronic migraine was just head pain, but it’s not. Chronic migraine is so much more than dealing with head pain. It is so much more than even navigating the physical symptoms.
Having chronic migraine means facing medical gaslighting. It means waiting over 6 months just to check in with my doctor.
It means having to contend with a healthcare system that’s built for profit, not for patient well-being.
It means sticking it out through multiple medications that don’t work for me before being approved for more effective treatments. It means dealing with uncomfortable, even debilitating side effects while trying to see whether my new medications work.
It’s being on the phone for hours with my insurance provider trying to get approved for the medication I need, the only one that finally helps.
Living with chronic migraine means constantly having to explain myself and how I’m feeling, because none of my symptoms are visible.
Living with chronic migraine means never being able to find the right words to make other folks truly understand what I’m going through.
Chronic migraine is exhausting. It can be extremely isolating and lonely.
Four years ago I was in a car accident and walked away with a really bad concussion. Just 2 months later, I got another concussion.
After my second concussion, I was diagnosed with post-concussion syndrome. This means your concussion symptoms don’t go away. I was told for months that my symptoms would get better and go away eventually.
Spoiler alert, they never went away. In fact, they just continued to get worse, and I continued to be dismissed.
It wasn’t until 3 years later when I was talking with my primary care doctor who told me, “Yeah, three to five headaches a week is actually not normal.” I had no idea. It had just become my reality. It was all I knew.
I had been medically gaslit for years by male doctors, and I was at a point where I just needed answers. I wanted to find a doctor who would actually understand me and my experiences.
I took the time to research a neurologist in my area who was also a Woman of Color. It was the best thing I’ve ever done for my health.
Within 15 minutes she diagnosed me with chronic migraine (yeah, those three to five “headaches” a week were actually migraine attacks…), ordered brain scans, and put me on a trial medication for relief.
I left that appointment feeling validated and hopeful. I finally had answers, and we were starting a treatment plan.
I’ve been officially diagnosed with chronic migraine for almost 1.5 years now. In the beginning, my treatment plan was rocky. I had to try a bunch of medications that made me feel awful before I was approved for migraine-specific medication.
I was so excited to finally try medication specifically made for my condition. Previously, I had been taking mental health medications, stroke medications, and other various medications used primarily to manage other conditions that were sometimes effective treatments for migraine attacks. Emphasis on sometimes.
Being able to finally have a medication solely created for my condition was exciting. Well, it was exciting until I went to pick it up at the pharmacy and found out it was $600 a month, even with insurance coverage.
I broke down and cried at the pharmacy.
I called my neurologist, and she told me about a savings program I could use that would take it down to $5 a month. With this information, I was back to feeling excited and hopeful again. And for good reason: The medication worked amazingly for the first few months.
The medication was reducing the number of migraine days I was having each week and helping minimize the severity of my attacks. However, this bliss was short-lived. A few months in, the savings program ran out, and my out-of-pocket costs jumped back to $600 a month.
Again, I broke down and cried. I had to go back to my neurologist, and we decided I needed to switch to another medication that fit my budget. This is the exhausting reality for so many chronically ill and disabled folks in the United States.
Remember that thing I said about the grief that comes with chronic illness? That’s the stage I’m in now.
It’s been a little over a year since my formal diagnosis, and over 4 years since my symptoms started. I know I’m still relatively early in my journey.
I’m finally starting to find treatments that help and make my daily life more enjoyable, but I’ve realized there is no magic “cure-all.” Before, I thought that once I found the right treatment and started feeling better, I would be able to go back to my “old life” or “old self.”
I thought I could bounce back to who I was before my diagnosis.
What I’m realizing now is that I don’t think I’ll ever go back there. I’m coming to accept that might be OK, but I’m also reminding myself that it’s OK if it takes me time to come to terms with my new reality.
Chronic migraine sucks. That’s the hard reality.
There’s so much grieving and processing that has accompanied my diagnosis. It has forced me to rethink every aspect of myself and my life. I have to navigate the world in a totally different way than I did before. I’m constantly managing my triggers.
I’m still coming to terms with my new reality and what it means, and I think I will be for a while. I’m realizing my health journey is not linear. I have to be patient with myself, and with my body.
If you’re at the beginning of your disability or chronic illness journey and feeling lost and overwhelmed, just know that I see you. You are not alone.
I know the feeling. It’s OK to be there and sit in those feelings. Don’t let anyone tell you that you can’t feel those feelings. It’s all a very real part of our journey, and we need to talk about it more.
Fact checked on December 08, 2022
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