I’ve had a horrible migraine for five days straight, and I’m thinking about how it’s affected my life the past few days. I haven’t gotten off the couch or seen the light of day! I’m living in the dark. [Tweet this.] I’m wondering how I can endure this pain and suffering a minute longer … but then I think of how living with chronic migraine in general has affected me.

And I sink into what I call my “Migraine Depression.” I think of all the drugs I have taken to prevent these migraines from happening, and I worry about how they have affected my body. I start to isolate. I don’t want to talk to anyone because no one ever understands.  But then I think of others who suffer from migraine and how it must be affecting them and wonder if they too have no one to go to who feels their pain. That is why I started a Migraine Sufferers Support Group – a safe place where migraine sufferers can vent their frustrations and get the support and understanding they need.

Chronic migraine has forced me to quit working, which has been harder to deal with than the disease itself. Migraine has affected my social life, my relationships with family and friends, and my marriage. Having to cancel plans frequently or always having to say, “It all depends on if I have a migraine,” can impact any relationship. Do I buy the tickets to the show I really, really want to see? Or will I be wasting money I don’t have because I could get a migraine? Do I book the trip I have always wanted to take even though I KNOW I will have a migraine at least a few of those days and potentially ruin my family’s vacation? Who wants be around a sick person all the time or listen to someone complain about their head hurting constantly? Do you have to tell your mate or kids to JUST BE QUITE all the time? Does the kid who plays basketball all afternoon during the summer make you go insane!? These are all things that affect the lives of migraine sufferers.

Not being able to work or provide for myself or my family, not being able to pursue my intended goals and career, and trying to come to terms with that, is what made me think of starting a migraine support group. Being part of the group has uplifted me more than I thought possible.  It has helped me get through the emotional stuff that goes along with this debilitating illness. Being able to share migraine stories and console members is so fulfilling. We even laugh during meetings! It becomes the highlight of our week. My group members always tell me how grateful they are to have a safe place to talk migraine.  They always leave group meetings in a better place mentally and emotionally than when they came.

The truth is no one can understand migraine unless they themselves have suffered. Mostly just talking to someone who can relate to you and your illness makes dealing with that illness more bearable and can take you out of your isolation. Having a place to vent your frustrations and get encouragement and guidance can make all the difference in your life. Find a group to join. If there isn’t one to join, start it!

At MRF‘s request, Renee has put her know-how on paper. She has written a pamphlet for others who want to start migraine support groups in their communities.