On the outside, I don’t look like I have a chronic disease. But I am fighting a disease – one that doesn’t leave me with scars or a tremor or limp. I walk around probably 90 percent of the time in pain. I try very hard for it not to impact my life, but that’s simply impossible. I’ve learned how to manage it and deal with it. After 13 years, it kind of becomes part of your life. That’s what migraines do to you. They become this uninvited guest, much worse than your rowdy neighbor or weird uncle. They infiltrate your life and make it all about them. They don’t want you to be able to work or go for a walk or even sit in a room with light.

Before my first migraine, I never even got headaches. I was someone who was well and active. Pain wasn’t something I thought about, at least not my own. But my mom did have bad headaches, and I believe they would now be categorized as migraines. I’m not sure if anyone knew what they were in the ‘80s and ‘90s. Migraines are often hereditary and that could be one reason I have them. Another thing I’ve always found interesting (although my physicians have never seemed to think there was a connection) was that the migraines started around the same time I was first diagnosed with ovarian cancer. Often, migraines are tied to hormonal changes, and this was definitely the beginning of major hormonal changes in my body.

So I can’t really answer the questions of why. Most doctors cannot. Migraines have been studied, and there are lots of drugs on the market. But I don’t think it’s something that most neurologists or pharmaceutical companies are really researching. I have some theories on this: migraines are more often a woman’s disease, there are more serious neurological diseases like MS or Parkinson’s or simply there’s no money in it. I’m not an expert on any of this; it’s simply an opinion.

I am an expert on living with chronic pain. Not because I want to be. I’ve had to adapt. It’s the only way I’ve been able to survive. I could probably be in bed most every day from a migraine. But what kind of life would that be? I could also be strung out on opioids. There’s a lot of talk about opioid addiction in the U.S. right now, reignited again in the media by the death of Prince. The number of overdoses has skyrocketed. It’s become an epidemic. Everyone wants someone to blame. For over 10 years, I had a prescription for an opioid to combat my pain. I never tried to acquire meds in any illegal manner either on the black market or by doctor shopping. I did not take the meds every day, but I took them several times a week, depending on my pain levels. They helped, but I became tolerant to them and needed to take more just to get some relief.

But I knew these meds were not helping me. They were making things worse and giving me many other side effects. So I took myself off the meds. For the first three or four months, I felt horrible. I went through withdrawals, which included sleeplessness, night sweats and lots of nausea. After about a year of being off the meds, I began to feel “normal.”

I still take medicines for my headaches but no opioids. And I won’t ever take them again unless it’s for a very short term due to a procedure or surgery.

I’ve been through a lot with my migraines. I never know what the day will bring. One of my biggest triggers is cold fronts or rain, which of course I have no control over! I’m thankful to have a great physician who is adamant about helping me find relief. I’m going to keep writing about migraines and all the different things I’ve tried. It’s a topic that needs to be addressed. It shouldn’t be something people try to hide. If you’ve never had a migraine, and that’s the majority, you wouldn’t understand that it’s much more than a headache. Migraines have become part of my life whether I like it or not. And since I have the ability to express myself with words, I wanted to write about the toil they have taken on my life. It’s not just the pain; it’s all the things I’ve missed. It’s forced me at times to be a bystander to my own life. That’s not okay with me.

I wanted to start a conversation. I want to say that I have migraines, but they don’t define me. If migraines have affected you or someone you love, please share this message and how you’ve learned how to live with pain.