It’s hard to find other people living with chronic migraine. Many of us are often stuck at home in bed, and when we do venture outside, we avoid talking about our condition for a laundry list of reasons.
Despite this challenge, technology makes it significantly easier to connect with other people who have chronic migraine. The best part about that? You don’t even need to leave your home to find them.
Start on social media
Sharing my migraine experience on social media made me more accessible to the migraine community. My social accounts have become an essential part of how I connect with others living with chronic migraine.
Following migraine warriors on social media is also a great way to connect with other people in pain.
While posting to my page and relating to other people’s posts is nice, the comment section is where you can start real, raw, and relatable conversations. In my Instagram comments section, I have read incredible stories that remind me that I’m not alone. It’s crazy that something so short and simple as a comment on a photo can make me feel less alone living with chronic migraine.
If I see a comment like, “It’s been two years of chronic pain, I am having a really hard time with this.” I'll reach out via direct message offering a friendly hello. Afterward, we often end up swapping migraine stories. I can’t offer medical advice or a solution to the problem, but I can offer my perspective as someone who understands. I “get it.” Reaching out to people in this way has connected me to many amazing people who have made my migraine experience so much better.
Take your ‘migraine relationship’ a step further
Social media is a great vehicle for me to introduce myself to others living with chronic migraine, but I’ve found that long-lasting relationships can’t be built on social media alone. If there is someone I feel especially connected to, I'll move the conversation to text, email, or phone.
Picking up the phone to talk to someone you don’t know is a challenge. That said, these are the people I end up talking to for hours at a time. In a matter of seconds, we’re opening up about our medications and medical history as if we’ve been friends for years.
Connect new friends with old friends
There’s a benefit in scheduling video conference dates, too. Sometimes I will ask a couple of others living with chronic migraine to join me in a friendly conversation. I’ll often do this if they’re tackling a similar issue. For example, when one friend had to stop taking her migraine medication because she was trying to get pregnant, I connected her to someone who had battled migraine during pregnancy before. Again, none of these conversations are about medicine or medical advice — it’s about relating to someone facing a similar challenge.
Keep the conversation going
Technology makes following up easy; we’re always in contact whether we realise it or not. When I am wondering how my friend in Scottsdale is feeling and what things she is trying, I'll text her to find out. I receive the same texts from her. It’s that easy. Sometimes, we’re too sick to respond to each other, but for the most part, we keep the conversation going. It’s clear that we both care and understand.
When I am at an all-time low or feeling especially frustrated with my migraine, I know I can reach out to her. It’s comforting to know that she feels the same way.
What if I am not ready to share?
If you’re not ready to share your story, you don’t have to! I am a private person by nature, so I understand if sharing — especially on social media — seems like too much. Fortunately, there is no right or wrong way to build these connections. With time, I have become quite transparent about my migraine life and the challenges I face. But I started small and waited until I was ready to take that leap. Now, my migraine circle is bigger than ever.
Let me be your first connection
Regardless of how you connect with others and how much you decide to share, technology is a great tool. If you’re unsure of where to start, let me be your first migraine connection. I’ve found that the mental battle is often just as hard as the physical one. It helps to know that you have a network of other people who “get it” always at your fingertips.
NPS-IE-NP-00035 September 2020