Social media has become a lifeline during the Covid 19 pandemic. Many groups that met in person have turned to online groups to continue meeting during these times of social distancing. Online groups have evolved over the years, but one thing has not changed – their ability to bring people who have something in common together, even though they are miles apart. Once social distancing guidelines begin to relax and you can resume meeting face to face, online groups will still be here. They have served people for some time now, and have their own niche, a niche that is essential for connection and creating community. These are some of the reasons I choose to participate actively in online communities.
1. Participate when you are able
When you have migraine, cluster or another debilitating headache disorder, the experience of having to cancel plans is an all too familiar feeling. Most, if not all of us, can relate to needing to talk to someone when you cannot leave your home because the pain is too great. Virtual communities can be a fabulous resource. Whether you are unable to work, after work you are too tired to meet at an in-person group, or there simply isn’t an in-person group near you, virtual communities offer the convenience of meeting from your home. Many groups have frequent posts and comments throughout the day and even the night, so you can feel free to read and participate as you are able, even if it is 3am! In addition, digital content is often available for later viewing if you miss a live presentation on a topic you really want to see.
2. Talk to others outside your local area
When you have a headache disorder, it helps to reach out online. Some headache disorders are rare and it can be hard to find someone local who understands what you are going through. Even though migraine is far from a rare disease, it is largely still misunderstood by society so connecting with others online can be very helpful and even normalizing. People with migraine often hear, “Oh I get headaches too,” or “I had a headache once.” But for those who are chronic or high frequency episodic, their lives are drastically changed. It is so much more than just a “headache”. Even just seeing how many others from different areas around the world have similar symptoms and problems to me can help combat the isolation I feel. I have migraine, which is not rare. I also have Cluster Headache which is rare. However, when I am online, I can quickly connect with others who have similar experiences to my own, and that is a much-needed lifeline.
3. Find out you are not alone
While migraine disease is not rare, there are symptoms that may be more rare, such as Alice in Wonderland aura or syncope. In addition, those with Hemiplegic Migraine or Cluster Headaches may find it more difficult to find others to connect with because of the rarity. However, in online communities, the world gets small quickly as you relate to people 5 miles away or 5000 miles away. I often feel isolated and unable to share my struggles with people I see in my day to day life. However, when I participate actively in an online group, I am able to support others in their struggle, and they give me support back. I have people I talk to on a regular basis who I would have never met had it not been for the online communities I am a part of. Those connections are now an important part of my toolbox for helping manage migraine and cluster headache.
4. Share tips and tricks
By meeting online with others, you will find yourself learning more about your headache disorder. For years, I didn’t have someone I could speak to about my symptoms other than my doctor. Online communities have given me the ability to “compare” notes with people in many places. While medical advice is not something to be given or taken in online communities, tips and tricks are helpful. I have heard for years that ginger for nausea can be helpful. However I had never found a product that helped me, until it was suggested that Gin Gins helped someone else. I finally found a ginger product I like that works for me!
Being a part of an online community has given me hope. No matter what kind of day I’m having, I know I can connect to others who understand. Online groups have helped me see more options for treatments, figure out questions to ask my doctor, and discover things to pay attention to when I’m charting my headache attacks. When I see others finding treatment combinations (because honestly, one medication doesn’t prevent and abort every single attack) it gives me hope that I will find mine too. I have gone from out-of-control pain to 10-12 better managed attacks per month. When I have others I can walk this journey with hope thrives, and that hope helps me face tomorrow.
Have You Connected with the Headache Community?
Online communities come in many sizes and topics. Some groups focus on general migraine and headache disorders, while others may focus on new medications being released so people trying them or those interested in more information can talk about their experiences. Other groups will connect based on a particular diagnosis or even by location so they can arrange meet-ups. Whatever kind of community you are looking for, that connection can be found online, and can make an invaluable difference to your life as you live with migraine, cluster, or other headache disorders.