Sponsored: Each year, June is designated as Migraine and Headache Awareness Month. Our community utilizes this time to empathize, educate, and empower the millions of people living with migraine.¹ However, for many people living with migraine, especially those living with chronic migraine, every month is Migraine and Headache Awareness Month. As someone who has lived with migraine for almost 17 years (and endured chronic migraine for most of them) I have found that this disease is often misunderstood and shrouded in stigma.² The importance of having a support system to help manage migraine cannot be understated yet it can be challenging to truly understand life with migraine unless one has lived it themselves. Here are the top five things I wish people understood about living with migraine.
1. A migraine is not just a headache.³ It is a distinct neurological disease.³ Though head pain can be one symptom of a migraine attack, there are many other potential symptoms as well.⁴ These may include (but are not limited to) nausea, vomiting, dizziness, and sensitivity to light and sound.⁴ Every migraine patient is different and has different triggers that induce migraine attacks.⁵ In my opinion, it is not only dismissive to refer to migraine as “just a headache”, but incorrect.³ By avoiding the term “headache” and using words like “migraine attack” to describe a specific instance and “migraine” to describe the disease, you can help educate the general public and show the people in your life who live with migraine that you truly understand them.
2. Because of certain triggers, a migraine attack can come on very suddenly and seemingly out of nowhere.⁵ A person may be fine one minute and not okay the next. They are not faking or exaggerating. They are not lazy or looking to get out of work. They do not want to cancel a social engagement at the last minute. They have a debilitating neurological disease that can impact many areas of their life.¹,³ It’s difficult to participate in your day to day life with migraine. Do not assume that someone must not feel too bad because they are on social media. For many people living with chronic migraine, social media is their only source of socialization. Chronic migraine can feel incredibly lonely and cause social interactions that were once critical to that person’s life to shift because others don’t understand what they’re going through.² People with migraine want to surround themselves with people who understand them and believe them. Take it from me, if you can be one of those people for someone, it’ll mean more to them than you can imagine.
3. Migraine is not a psychological disease or “all in our heads.”³,⁶ It is also not only a “women’s disease.”¹ As a person living with migraine I have found that engaging in weekly sessions with a counselor has been incredibly helpful for me. My counselor works with me to develop coping skills and to re-build my “new normal.” The type of therapy I engage in encompasses both individual and group sessions that teach skills in four core modules: mindfulness, interpersonal relationships, emotion regulation, and distress tolerance. While I find all of these helpful, the distress tolerance skills are particularly helpful for me during a migraine attack. I find the other three modules to be more useful before and after the attack itself. Validation is also a key piece of this practice. Sometimes all I need is for someone to listen and bear witness to the joys and challenges of my life while also helping me navigate them.
4. Having a support system is an important part of living with migraine. I have a group of people in my life that I refer to as my Dream Team and I am forever grateful for their love, wisdom, support, compassion, and empathy. This team includes (but is not limited to) my family, my friends, my primary care physician and her staff, my headache specialist, my therapist, my psychiatrist, my Intuitive Eating/Health At Every Size nutritionist, my two favorite pharmacists, and the chronic illness support group I attend. At times, I have also had a massage therapist and an acupuncturist on my team as well. Living with migraine can be so lonely and isolating and having people in my corner is so important which is why I’ve teamed up with the Know Migraine Mission community to help make the world more migraine friendly and to help those with migraine feel supported. People I thought were my friends dropped out of my life when my migraine attacks became more frequent. However, the community of people living with migraine and other headache disorders has welcomed me with open arms. Meeting other people who really understand what life with migraine is really like has helped me feel less alone. They have become my family and I cannot imagine my life without them. Those relationships would not exist if I did not have migraine and as odd as it may sound I am grateful that migraine brought us all together.
5. There is currently no cure for migraine. However, this is a very exciting time for people living with migraine because there is so much research being done and many different migraine management options are now available-some with data showing long-term benefits.
If you are a person living with migraine, please know that you do not have to go through this alone. There are many different organizations and support groups to help. You have a community of people who understand you even if you have not met them yet. Start by sharing something you wish people understood about those of us who live with migraine. You may find that someone else can relate and a connection could be made.
This post is part of a collaboration between myself and Amgen. I have been compensated for my time. To learn more about my involvement in the Know Migraine Mission, please visit http://www.KnowMigraineMission.com.
- Lipton R, Bigal ME, Diamond M. et al. Migraine prevalence, disease burden, and the need for preventive therapy. Neurology. 2007;68(5)343-349.
- Rutberg S, Ohrling K. Disabil Rehabil. 2012;34(4):329-336.
- Russo AF. Annu Rev Pharmacol Toxicol. 2015;55:533-552.
- Headache Classification Committee of the International Headache Society (IHS). Cephalalgia. 2018;38(1):1-211.
- Kelman, L. Cephalalgia. 2007;27(5): 394-402.
- Sprenger T, Boorsook D. Cur Opin Neurol. 2012 June;25(3):252-262.