By Rachel Lance
Interview by Melanie Styles

Rachel Lance is a 36-year-old woman with migraine in the US. She finished her high school classwork early so she took Emergency Medical Technician (EMT) classes. Because of her advanced studies, she was able to finish her associate’s degree in Emergency Medicine and passed the exam to be an EMT and a medic. Rachel is a spectacular person and friend who is very active and supportive in the chronic illness community on Twitter. -Melanie

What is your earliest memory of having migraine?
I first started to [realize I had] migraine when I was in middle school. I just remember having my head hurt so bad[ly] I couldn’t do anything.

When were you diagnosed with migraine?
I was diagnosed with migraine when I was 16.

What types of migraine were you diagnosed with?
Occipital and hemiplegic migraine

How has migraine affected work and/or school?
Because of hemiplegic migraines, I no longer can work. I didn’t have hemiplegic migraines till later in life. I was 32 when I was diagnosed with them.

How has migraine affected your relationships?
It’s hard because I have chronic migraines so I don’t get out much which effects so much of relationships with friends and significant others. Thankfully most of the people in my life have been understanding of the migraines and that I can’t get out when I have one. I have lost friends who just didn’t get it and that has been painful.

Do you feel your loved ones care about how migraine affects you?
Some of them do others don’t care. They get sick of hearing about them that they tune out anything [that has] to do with them.

How has migraine affected your activities you do for fun?
My idea of fun has changed big time because of my chronic migraines. Watching Netflix and talking to fellow spoonies* on Twitter or my friends on messenger on semi good days is my idea of fun. I rarely go out to a concert or dinner with friends. My best friend and I try to go out once a week if I’m feeling good.

Have you found new activities due to migraine?
Yes. Netflix and snuggling with my cat is a huge activity I do a lot because of my migraines. I do go out for coffee with my best friend. Other then that I don’t go out much because I usually have a migraine.

What was your diagnosis journey like?
My journey started when I was young. It took years of being told it was just allergies or sinus headaches before I was officially diagnosed with migraines at the age of 16. I was diagnosed with occipital and aura migraines then. Then out of the blue I had stroke like symptoms when I was 30 and had a droopy face and loss of feeling in my left side leg and arm. It took two years before I was diagnosed with hemiplegic migraines.

Do you have hope for relief for you? A cure? Or do you think migraines are forever?
I hope for a cure one day. But with having a rare form of migraine I have pessimistic view of […]a cure because nothing has worked for my migraines yet.

What hope do you have for future treatment or the current treatment you’re trying?
I hope that maybe the new drugs that were just approved might help my migraines I will get a chance to try them maybe soon when I seen my neurologist.

What things you do to maintain hope? Activities? Belief system? Things you look forward to?
I talk to spoonies* on Twitter. I talk to my best friends when I’m down. I do self-care when I’m down.

What message can you send new people with migraine?
I know the road seems rough and there will be some very bad days. But there will be very good [ones] as well. Have a neurologist that believes in you and listens to you. That is willing to try whatever treatment there is out there to help you. Twitter is a great place to find support and migraine buddy is a great app for keep track of migraines which can help your neurologist.

*A Note from the Editors: A “spoonie” is a term used by many with chronic illness to describe themselves. It is based on “Spoon Theory“, a short essay by Christine Miserandio.