Battling migraine alone is a real challenge. For years, I felt like I was fighting against my migraine all by myself. However, with time, I figured out that I had to lean on others and connect with others to get through the rough times.
Here’s a look at my “migraine team” and how I ensure that I have the best support system for me:
I’m lucky that my mom has always been open to understanding my illness and is willing to pick up the phone anytime, day, or night. Despite her willingness to help me and stay by my side at every hospital visit, it’s still a challenge as she lives in another city across the country.
Due to our distance, I need to continually update her and explain to her how I’m feeling. Most often, she knows my pain level simply by how my voice sounds over the phone.
That said, it’s important that I communicate all of my migraine struggles to her. That helps me to make sure she’s always up to date and informed of my condition.
I tend to turn to my mom when I need help making decisions about my migraine. It’s usually when I’m feeling frustrated or upset.
My neurologist and pain management specialist
Over the years, I’ve seen many doctors and have often felt disappointed by their lack of understanding around migraine.
At first, I assumed that doctors simply didn’t understand migraine — even my neurologists — because they continually diminished my pain and wrote it off.
However, with time, I’ve been fortunate to find a great neurologist who has been a huge support to me. She’s constantly thinking ahead and helping me curate a list of “things to try in the future,” so that I never feel hopeless or out of options.
She even connects with my pain management specialist to make sure that they’re approaching my illness in the best way possible. I tend to turn to this team when I have medical questions and when I want to figure out my next steps.
My friends with migraine
Having a network of other migraine sufferers with whom I can regularly connect with has provided an amazing amount of support for me.
For the most part, people in my life have introduced me to their friends with migraine through word of mouth. These connections only came about once I began speaking more regularly about migraine.
I also connect with other people living with migraine via my various social media accounts (@MigraineWriter).
This allows me to chat with thousands of other people, regularly swapping stories and sending messages of support to each other. Knowing that they understand makes me feel much less alone.
My friends without migraine
Although most of my friends without migraine have a hard time understanding my pain, I still reach out to them when I’m having a painful day.
Sometimes, it’s just to talk on the phone or meet for tea at a local café to help distract me from my pain. Other times, these friends will come over to hang out with me on my couch or in my bedroom while I sit in the dark.
It’s been important for me to arm myself with a team of friends who can be there when I want to feel like I have a life outside of my migraine pain.
Other medical professionals
Although I’m not seeing any other medical professionals outside of my neurologist and pain management specialist at the moment, I tend to have one or two others in my support network.
These include an acupuncturist, nutritionist, psychologist, chiropractor, and massage therapist.
My core team can also change depending on what I feel like trying at any given time. However, when someone is part of my overall medical game plan, I make sure to continually keep them in the loop with my decisions.
It comes down to communication
For years, I hid my pain from others and neglected to share how I was feeling. Fortunately, over time, I’ve become more transparent about my illness and my pain but only because I was ready to share this information.
Sharing, although scary and sometimes disappointing, has allowed me to inform the people in my life how I’m really feeling. Once they have a better understanding of my pain, they have a better sense of how to help me.
Now, I’m proud to say that with a lot of communication, I’ve been able to curate a team of people who are ready and able to help me. They’re even available if I hit roadblocks and low points along my journey with chronic illness.
For more information on how to manage migraine, reach out to your doctor or healthcare team.
NPS-US-NP-00471 AUGUST 2019