It is more blessed to give

Sometimes I take my migraine knowledge for granted. Not too many years ago, I was the one searching for answers. In a random twist of fate, I stumbled into the path of a patient advocate who gave me just what I needed. Those early nudges in the right direction set me on a course toward effective migraine management and a passion for sharing what I learned with others.

In the past month, three strangers have reached out for help just like I did over eight years ago. Each woman had lots of practical experience dealing with migraine yet lacked critical information important to her situation. Their search for help led them to someone who could provide the missing pieces and offer additional tips to guide them on their migraine journey.

A red box with a white number 1 appeared next to the Messages link on my Facebook page. I clicked it and began to read the story of a mother desperate to help her teenage son with chronic migraine. She needed help understanding her son’s educational rights before the next 504 Plan meeting. We exchanged a few brief comments and then agreed to a phone call. We spent over an hour one evening going over the intricacies of educational and disability law as well as some basics on migraine management. She still keeps me updated on her son’s health and educational progress.

A few days later, I receive both a text and a Facebook message from one of my best friends. Her mother-in-law had suddenly started getting frequent migraines after years in remission. She asked me to reach out and offer my support. We compared the differences between current migraine treatment and the treatment she recalled from many years ago. Fortunately I was able to send her the names of several board-certified headache specialists within driving distance of her home. Much of our conversation involved a discussion of lifestyle factors that could be triggering her migraine relapse.

About a week later, another woman left me a private message, asking to chat because she felt “stuck” in her progress. We discussed the need for (and the differences among) acute, rescue, and preventive migraine treatments. We also explored trigger identification and that ever-elusive search for the perfect headache specialist. Every migraineur deserves to know this basic information. The real tragedy is that very few ever find out. Unless you receive care at a specialty headache clinic staffed by headache specialists, migraine patient education is relatively poor. We must rely on our own research and the kindness of volunteer advocates to obtain the information we need.

I’m not sure who benefitted more.

Sure, each woman received helpful information to address her concerns about migraine. Yet I can’t help thinking that I got the better end of that deal. I now have three new friends. This disease brought together strangers from different places who might otherwise never have met. It’s not the first time either. My life is so much richer for the many friends who understand migraine’s challenges. We pick each other’s brains for ideas, make room for pity parties and angry rants, celebrate every little success, and share in each other’s lives. While migraine may have brought us together, it doesn’t dominate our friendships. Although most of us have never met, we’ve shared so much – weddings, new babies, hobbies, new houses, wrecked cars, bitter breakups, job losses, the making of new careers, the death of loved ones, graduations, dance recitals, birthday parties…everything about our lives is shared.

It took a personal tragedy for me to find the thing I was meant to do. Now, every day I get to talk to people like you about migraine and empower them to change their lives for the better. In exchange, I receive the gift of friendship that goes far beyond whatever migraine tries to take away. Thank you all so much!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (3)
  • Julianne
    3 years ago

    I got an occipital nerve stimulator (ONS) in 2009 that has been incredibly successful. It was a scary process because at that time there was virtually no info on the internet so I went into it blind. I blogged about my experience, seeming that if I could help even one person not have to go through what I went through, it would be worth it.

    The response to my blog was incredible! I set up an email associated with the blog specifically for that topic and I got over 100 emails! I wanted to connect people and give them access to more stories than just my own so I started a Facebook group, which I hoped would get a few hundred members. Today it has over 1500 members! It is so much bigger than I ever expected.

    Due to some other health problems, I quite working and went on disability at the end of 2011. It was tough. I felt like I was no longer a productive member of society and I really struggled with that. The blog and FB group gave me something to focus on and made me feel like I was giving something back to people. I’ve talked to over a dozen people over the phone to give advice and met with a handful in person as well. It might not seem like much to some people but I’m really proud of the work I’ve done educating and advocating for nerve stimulators. Not only have I helped others, but I’ve helped myself.

    And I’ve made some amazing friends! Some people may laugh that I call people I’ve never met in person “friends,” but they are. I don’t want my whole identity to revolve around my headaches and these online friends provide me with a great support network I can turn to instead of having to burden my family with it.

  • Sharon Beckwith-Johnson
    3 years ago

    I have been on sick leave now for almost 2 months and am due to go back on May 16. I have the Botox treatment and take depokote 2 times a day. I also take blood pressure meds and valium. I did the sleep study and I dont have the qualifying markers for the cpac. I have depression and anxiety attacks. I have been told by co-workers that I fall asleep but I never realize I have fallen asleep just that I am missing time. I am scared that I will have a stroke because of this. I have a great support system with my family…except my sister in law. I carry the insurance for my family so that is a stresser on me. I’m afraid that I won’t be able to return to work because of the kind of work, accounting. I can’t even balance my check book right now. Just need to know I’m not going crazy.

  • Tammy Rome author
    3 years ago

    You don’t sound crazy to me. If I were in your shoes, I’d be stressed and worried, too. Have you talked to your doctors about your concerns? Do you think your employer will be open to an accommodations that ease you back into your job gradually? It can be a lot to jump back in at the same pace you left. Also, have you thought about how to avoid the triggers that were present before you took sick leave? That would be important. If you go right back into the same environment with the same triggers and no plan to avoid or mitigate their impact, then your return could be unsuccessful.

    Here’s an example from my own life. In my last job, I drove to client’s homes every day, putting over 100 miles on my car each day. If I were to return to working, it couldn’t be to that job because there is no way to control for trigger exposure. I can’t possibly screen every single client for potential triggers in their home. I would need a work environment where I am in control of lighting, lack of fragrances, and the flexibility to change body positions frequently. I haven’t yet found a work environment that is suitable…except for home and even then, I must work to challenge ingrained work habits that are triggers, such as not taking breaks, skipping meals, etc.

    I hope this gives you some new ideas to think about.

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