Finding Your Voice Part 2: You Can Do It Too!
Who me? Find my voice?! If that sounds overwhelming to you then read on…it’s honestly not as scary as it sounds, and you too can find ways to speak out!
If you haven’t read my first article, “Finding Your Voice Part 1: A Ripple That Makes A Difference,” you may want to read that first. Hopefully, it will help put the fear, shame, and exhaustion that so many of us live with on to a back burner - at least for now.
We are so much more than our disease, and there are so many ways that we can begin to make a difference in our own lives, the lives of our children, grandchildren and families, our friends, and the migraine community as a whole.
10 ways to find your voice
Here are ten ideas for finding your voice. Let us know what works for you or if you have other ideas to add to these:
- Share migraine memes and articles on social media
If you’re looking for a way to get your feet wet, or just love sharing quick and easy current information and inspiration, then this is a great place to start. There are many migraine organizations and groups which regularly post inspirational, funny, and educational memes which are easy to comment on as well as share on your own social media profiles.
There are also articles which describe migraine, go into details about emerging treatments, as well as in-depth research articles, most of which are also easy to share. Sharing on social media raises awareness, educates, inspires, and can even bring much-needed laughter. So, find the groups, organizations and blogs that you like the most and share away!
One of the saddest things about migraine is that up until recently it has seemed to remain in the shadows. Something which is little spoken about and even less understood. Talking to our friends and family about migraine, what an attack is like, the need for effective treatment, and even how they can help, can be challenging but can also open the door to change.
You could talk about migraine triggers, medication side effects, symptoms, dealing with the health care system, let them know what you need during an attack, or even some healthy boundaries. It’s okay to start slow, pick one person who you think is open to learning and who cares about you, and take the leap of sharing!
For decades there have been no new abortive medications specifically for migraine, and until May 2018 there were literally no medications available that were specifically designed for migraine prevention. There is a definitive surge in research and clinical trials that is both exciting and cause for hope.
Learning about not only the new migraine medications that are on the market but also the emerging treatments that are coming up is empowering, and helps you partner together with your doctors in the best treatment plan for you. It’s okay to learn everything you can, have two-way communication with your doctors, and even provide them with articles and current information that they may not have read for themselves.
Requesting accommodations at work or school is something that is supported by the American Disabilities Act (ADA) here in the USA. Most people still do not realize that migraine is not just pain in the head, and in some people, particularly children, presents itself with no head pain at all. Accommodations can make all the difference between struggling and surviving or even thriving in school and at work, and can include (although not limited to) any of the following:
- A scent-free environment
- No fluorescent lighting
- Being able to wear sunglasses indoors
- Having a room to lie down in while medication takes effect
- Flexible work hours
- Stable shifts
- Work at home options, etc.
If you need accommodations at work, make a formal request in writing that is supported by a letter from your doctor and give it to your employer to start the process. For K-12 you can initiate a 504 plan for your child, and if in college, begin the conversation with the school dean or counselor. Asking for accommodations doesn’t make you any less of a person or any less valuable or effective, it just helps you be the best that you can be while living with migraine disease.
If you are able to get out of your house, even for a short time, then try attending short migraine events such as Miles for Migraine - don’t worry if you can’t run or even walk far, just showing up makes a difference.
If you are able to travel at all, then consider going to a conference such as RetreatMigraine and experiencing a whole new level of community. You may need to plan in recovery time afterward, but seeing and connecting with other people who live with migraine, like you, can be incredibly encouraging, inspirational, and give you the courage to keep putting one foot in front of the other.
All of us have different skills and talents, and there are so many ways that we can use them within the world of migraine. Whether you are a writer, speaker, artist, administrator, great at marketing, a techie whizz, or just love being around people and helping, there is a place for you! Take a look at some of the migraine organizations and groups, see if they are looking for help, or ask an advocate what opportunities might be available. A list of some ideas and opportunities can be found on the CHAMP website.
Local support groups for migraine are often challenging because of the unpredictable nature of migraine. However, meeting with others in person can be really helpful, even if it isn’t on a regular basis. Local groups help provide much-needed community and guidance, as well as raise awareness locally. There are an increasing number of support groups starting around the country, but if there is not one near you then maybe consider starting one and helping make a difference face to face with others who live with migraine!
Migraine disease receives minimal federal funding for research. As a result, we often experience a lack of accommodations in the workplace and at school and policies that don’t work in our favor. One of the most concerning things that needs change is the often lengthy, complicated, and exhausting process of applying for disability.
There are many opportunities to speak out to Congress and policymakers. These opportunities range from writing letters, filling out surveys, or even attending Headache On the Hill. Taking action to change policy transforms your pain into power! Consider joining a growing network of people who are speaking out to help bring change at the grassroots level.
There are a growing number of supportive, educational, and inspirational Facebook groups that are making a huge difference to many. However, those groups need to be run by a team of Admins and Moderators as they grow in order to stay effective and not cause burnout in people who start them. There are endless opportunities to be involved in this way. So if you like encouraging people, connecting others with information already out there, or researching new information and treatments, then reach out to the Admins of a group you belong to and see if they need help!
There are many reputable migraine organizations that accept ongoing donations that go towards research, support, education and advocacy efforts. If you have the finances available, every donation is much appreciated. However, it’s okay if your financial constraints don’t allow you to donate funds yourself. Many of these organizations can be supported through social media options to raise funds, purchasing products, or just letting the people you know hear about the lack of current funding and the incredible need for new research and treatments.
Have you found any of these to work for you? Which do you like the most? Let us know of any other creative ways to find your voice!
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