What was your world like prior to March 2020? Were you working outside of your home? Getting together with friends and family? Going to sporting events, concerts, parties? Enjoying a meal out with friends/family? Going on vacations? Business trips? Walking around an amusement park? Maybe just walking around the mall? Some of us were going to gyms to workout or jogging with a friend without a mask.
Then Everything Changed
People scrambled to figure out how to live, work, school their children and be social. The regular people were loosing their minds! How were they supposed to survive in this new reality, being restricted from doing all of the things that they loved to do? They were having to figure out how to turn their homes into the office, the school and the play zone all at once.
While it was a scary time for all of us, we — the chronic migraine, headache, cluster community — already posses these skills. Most of us are homebound, cut off from the rest of the world, due to our illness(es). Some of us are still able to hold down a job and do some activities, but there is always a price to pay for being “normal.” We know our limits, but a lot of the time exceed them to appear like everyone else. Do you do this? I know that I do most of the time. It is difficult because people do not understand all the facets of our disease and why there isn’t a cure all. OH MY GOD, WOULDN’T THAT BE NICE!?
Live Like We Do
Our community was able to show the “normal” people how to live like we do, isolated from others. It’s bittersweet because we do not want to be cut off from the rest of the world, but we have all of the skills to do so.
How does this translate into finding ways to get virtually connected in this new era of treatment? We are able to see many of our doctors and mental health professionals virtually. It took more than our community needing this option to make it happen, but at least it is now an option. Most of us understand how tiring it is to shower and get ready to go to the doctor’s office. It depletes your spoons for the day.
Virtually Connect to Headache/Migraine Communities
If you Google migraine communities, you find quite a few organizations listed, but you will also find advertisements for migraine medications, which is distracting. I started with social media (Facebook, Twitter, LinkedIn) because I was looking for human engagement. I figured that since I spend so much time on social media, there was someone out there like me. And there were so many people and groups out there — it is amazing! There are also tools such as Zoom, FaceTime and Facebook Live, just to name a few. These are important because they help to keep us connected virtually to our family, friends and even doctors or support groups. We are very fortunate to live in this time period because of all of the technology out there. Even something as simple as having groceries delivered is an awesome virtual gift!
No Human Interaction Kills the Spirit
Imagine for a moment if all of this was taking place even twenty years ago. No one was really connected virtually like we are now. You were lucky to find a support group or to easily share stories and experiences. They weren’t readily online. What a lonely existence that must have been, literally cut off from the outside world.
My advice: Go to the social media platform you are most comfortable with and run a search. If you are not comfortable with social media, then search migraine communities on your preferred search engine. Browse different communities to see where you are most comfortable and where the members are most like you. And you can belong to multiple organizations too! Stay connected. Sometimes it is the only thing that may keep you going and not feeling alone in your migraine journey.
Kristen L Estep
Chronic Migraine Awareness, Inc.