5 Benefits of Finding an Online Community When You’re Living with Chronic Migraine
January 14, 2021
Content created for the Bezzy community and sponsored by our partners. Learn More
No one is alone in a community where everyone understands what others are going through.
Living with chronic migraine is physically and emotionally draining.
The symptoms I feel — head pain, nausea, dizziness, cognitive issues, and sensitivity to light, sound, and scent — can make it difficult to interact with others on a daily basis.
More often than not, the symptoms of an attack are too much to overcome, and isolation is the outcome.
Avoiding triggers is another aspect of migraine management that leads to seclusion.
My triggers for migraine attacks can be wide and varied — everything from the weather, stress, sleep disturbances, scents, busy environments, hormones, and food.
So basically, life is a trigger for me and others with chronic migraine.
These symptoms and triggers often make it nearly impossible to go out with friends or even eat at other people’s houses.
If I’m having an active attack, the pain and light sensitivity is often more than can be managed outside my dark bedroom. Some attacks make it difficult to talk or walk due to dizziness or numbness.
Migraine is often described as a very bad headache, but the symptoms I described are not part of a headache. It’s part of a neurological condition that affects so many individual systems within my body.
Explaining my symptoms to others who have never experienced them is hard. What words do I use to explain how light hurts me? Or how a soft touch will light up my allodynia? Or how I sometimes feel like I’m not really in my body but observing it?
Finding a community of others who already “get” these things is invaluable.
These five benefits of finding an online community illustrate how important connecting with others can be.
Support and understanding
The importance of a supportive and understanding community should not be underestimated.
Often, we might not know another person in our “real life” who has the same experience with migraine. However, online we can meet others who have traveled a similar path.
It’s hard to explain the sense of relief I felt when I connected with others with chronic migraine. Just to know I wasn’t the only one feeling overwhelmed, and having my symptoms confirmed and validated by others, was a huge relief.
New ideas for symptom relief
Many of us have traveled to the end of our treatment options with a particular provider. There’s almost nothing worse than a doctor telling us they can’t help us anymore.
A community has the opportunity to demonstrate that options are almost limitless when imagination is paired with a knowledgeable, determined doctor and patient.
Sharing our personal experiences involving our doctor’s care helps us encourage others to look for a specialist that’s as passionate about helping us as we are about getting relief.
The American Migraine Foundation (AMF) has a tool to help find headache specialists near you.
It’s important to be cautious about trying remedies and treatments recommended by peers. While others can speak to what has worked for them, talk with a healthcare provider who has expertise in treating migraine before putting community tips into action.
Provider recommendations
While I love the tool from AMF, sometimes it’s best to compare notes about a provider and see if their personality will mesh with your own.
Asking for provider recommendations in a support group can lead to the best doctor for you.
While we might not personally know anyone else in our area to ask, online support groups give us the ability to get recommendations from people who live near us.
Knowing the differences in provider approaches can help us decide who we should contact to schedule an appointment. This can be very valuable when we’re struggling cognitively and emotionally.
Having a recommendation instead of just a link to a random headache specialist can make all the difference in how we approach the appointment.
Encouragement during the hard times
Migraine takes a toll on us. The unrelenting pain, dizziness, and brain fog we feel can be so isolating.
Finding a community of others who sympathize because they have the same symptoms is huge.
I don’t have to explain in detail how much my 4-day attack is wearing on me. The community gets it and will reach out with encouraging ideas and comments. My online family can lift me up when I am struggling.
I have seen countless posts that start with a person in misery and feeling hopeless. The online community rallies around them and helps them see that there are other options to try or even help shift their perspective.
No one is alone in a community where everyone understands what others are going through.
Purpose through helping others
Helping others that are in the same place can be empowering.
There’s a sense of purpose in online communities.
Stepping up and providing an answer for someone else helps us realize that we’re stronger than we think; that we have much to offer from our own experiences.
Reaching out to others and commenting on their posts can make all the difference in someone else’s day or even their life. This sense of purpose — knowing I can make a difference — is what keeps me going even on days when migraine is taking its toll.
Join a community that gets it
Have you explored the option of an online migraine community? As the community guide in the Bezzy Migraine community, I would love to connect with you.
Join our community and check out the live text chats that we hold five nights a week.
Article originally appeared on January 14, 2021 on Bezzy’s sister site, Healthline. Last medically reviewed on January 14, 2021.
Medically reviewed on January 14, 2021
Like the story? React, bookmark, or share below:
Have thoughts or suggestions about this article? Email us at article-feedback@bezzy.com.
About the author