Moving the Needle – The Patient’s Perspective
by Katie MacDonald
Remember how when your computer was really slow you would “defrag”? This would reduce the “dead space” on your disk drive and make accessing the files more efficient. I feel like I am in a constant state of fragmentation – too much dead space that makes it hard for my brain to function efficiently. What is really happening is I am a person living with chronic daily migraine. I have had migraine since I was 14 years old; the last 32 years of my life. Looking at me and looking back at photos of me, you might conclude that I look perfectly normal. The truth is, in every one of these photos where you see me smiling, I see (and remember) the migraine attack I was managing that day.
Fortunately, I am what is called “highly functioning”. I am able to manage my pain and disability in a way that allows me to continue to be relatively productive on most days. I honestly believe that is due to the support of my friends and family and a healthy case of Fear of Missing Out.
As my journey progressed from episodic to chronic and then, chronic daily, I became one of those patients that could be considered difficult for a practice to manage. I was calling my headache specialist’s office more often than normal and growing increasingly frustrated by what seemed to be a lack of urgency or response. I was in pain and needed a solution. I did not really understand that a solution did not exist. It was through this time that I learned about the importance of self advocacy. I needed to find a way to effectively communicate my needs and get responses that were helpful.
I have always been the patient that shows up to my appointments with my updated headache diary and a list of questions – both about my own care and about the state of migraine research in general. I knew that my headache specialist traveled to a lot of conferences and was interested in migraine research himself so I was eager to learn from him.
In 2013, my headache specialist invited me to come to a regional headache society meeting that was taking place nearby. This was a meeting designed strictly for professionals in the field of headache medicine. I was the only patient in the room. Some of the material presented was well above my level of comprehension, but this meeting turned out to be a pivotal point in my journey.
Two years later, after asking questions about the event for years, my headache specialist asked me if I would like to come to a migraine advocacy event in DC called Headache on the Hill (HOH). My doctor, Dr. Shapiro, founded this event. I was over the moon with excitement (and nerves) but this too turned out to be a life changing event for me.
Another year and a half later, I came to the realization that as highly functioning as I may have been, I could no longer keep up. I could not work full-time outside the home, and manage my life while living with chronic daily migraine. I was giving my all to show up at work and appear normal. I would rarely take a sick day, but it was frequent that I would leave work a few hours early and presenteeism was alive and well for me. I was drowning and needed to readjust. I took a 6 month leave of absence. Though I had been on short term disability leaves multiple times before this, this leave gave me the time to realize that what I have is a disease. It is not caused by my work or by stress.
During my leave, I started volunteering for Miles for Migraine. I needed to feel productive and wanted to get more involved in advocacy. As my leave of absence was ending, I realized I could not manage going back to work in an office, full-time. I was still not “better” and needed to continue to prioritize my health. I spoke with my employer about the option of coming back in a part-time position, but they said they did not have anything part-time for me; I could come back to my original leadership position if I wanted to return to them. This was a very difficult decision for me. I am a goal driven, career focused woman. I did not know what my identify would be without my career, but I declined.
A few months later, I was hired as the Director of Operations for Miles for Migraine. Not too long after that, I was also hired for a part-time role with the Alliance for Headache Disorders Advocacy to run their annual HOH event. Since leaving my career, I have had to re-establish myself. I work from home in a controlled environment. I have the needed flexibility to manage my disease and work full-time. I am doing work that I am passionate about and feel like I am making a difference. Despite chronic daily migraine, I am working full-time again.
Through the journey of managing my care, I have come to understand a few key things. I wish I had understood all of this from the beginning, but perhaps someone else will reap the benefits of my learning.
- There is no cure and treatments are limited. Yes, I was told this from the beginning, but it took many years for me to really understand what this means.
- We need advocates on our side and we need to learn to advocate for ourselves. For the times when we are really unable to function, we need people who are willing to help us represent our needs. This includes the providers and staff who manage appeals with insurance companies and family or friends who are willing to make calls or book appointments on your behalf. Equally important though, we all must take an active role in our own care and as much as possible, speak up about what our needs are.
- The importance of expectation setting. It is important for a provider to share how a patient should best communicate with them and their office. When should you be reaching out and how long should it take to hear back? Also important is setting expectations around how long it may take for a new treatment to be effective vs when it is time to request a change.
- Providers are frustrated by the lack of treatments too. It is not that I ever thought my headache specialist did not care but listening to the conversations and questions during that HCNE meeting back in 2013, I had the realization that providers too are frustrated by not being able to help their patients feel better. Many of them have migraine themselves and are very empathic toward our pain. I wish every patient realized how much their providers want to see more effective treatments and less disability among their patient population.
- Patient’s should not expect advocacy to be someone else’s job. I hear this way too often: “Why isn’t my provider doing more to get better treatments?” or “I’m too sick to advocate, my provider should be doing that.” There are 47 million people with migraine and headache disease and 564 UCNS headache specialists. The voices of the patient population can ring so much louder if utilized appropriately. Better yet, let us all work together with a shared voice.
- It is better to participate and pay the price, then to miss out … and pay the price. I am in pain every day. I decided a while back that whenever possible, I would rather go be with my friends and take part in an activity, needing extra recovery time from the migraine the outing creates vs opting out of something because I have a migraine. For the later, I miss the fun, I am isolated, but it rarely means less physical pain.
MOVING THE NEEDLE THROUGH ADVOCACY
As a person living with chronic migraine and a person who has now made a career of migraine advocacy, you will not be surprised to hear that I believe advocacy is the key to moving the needle for migraine. I first learned about advocacy through my mother who taught me about self-advocacy and speaking up for my needs in the healthcare environment. I learned about a different type of advocacy through my headache specialist.
My first HOH was a game changer in my advocacy journey. This is where I got a real taste of advocacy in action and realized I wanted to be more involved. HOH brings together patients and providers working toward a common goal. This was also the first time I was in a place with so many other people who openly shared that they too were living with migraine. During the meetings we had with our Members of Congress, I felt like I was really being listened to as I shared my story; It was a story people wanted to hear. This experience gave me more confidence to share that I have migraine and how it impacts me.
Advocacy is not just for health care providers. It is not just for the patients either. It should be a joint effort. Here are a few suggestions for how providers can promote advocacy and get more involved themselves:
- Encourage your patients to share their story. The more we talk, the less stigma there will be. Patients will also likely be surprised how many people share that they too have migraine or know someone who does.
- Talk to patients about your involvement. Appointments are short and you have limited time to cover so much, but when possible, share with your patients if there are events that you are taking part in to help move the needle. This will build a new level of trust and admiration.
- Make your patient base aware of events and resources. Is there a Miles for Migraine walk or education day happening in your area? Have you shared a link to the CHAMP (Coalition for Migraine and Headache Patients) website? Is your patient someone who is well-spoken and may be a good applicant for HOH? Help open your patient’s eyes to the world of advocacy. It will be one of the most effective prescriptions you give them.
Advocacy is the path to moving the needle for migraine disease. It gives purpose to a disease. It connects people living with similar experiences and lessens feelings of isolation. Everyone wants to feel productive, even if they are not able to work. Advocacy provides a way for people to participate at various levels and leads to increased function. And again, the more we have people talking about migraine, the more the disease will be understood and less it will be stigmatized.
Beyond advocacy, there are plenty of other ideas for Moving the Needle on migraine. What if we worked to expand our reach by providing more education about migraine to primary care and nurse practitioners, specialists like OB/GYN, ENT and optometry, or emergency departments and school nurses? So many people with migraine are never making it to a headache specialist. We must cast a broader net to provide necessary diagnosis and care through other providers.
How about if large employers offered required learning on invisible illness in the workplace? These forms of learning are common for training on sexual harassment. A 10-minute required video to sensitize workers around what invisible illness is and how you can be supportive of coworkers living with one of these diseases could help.
I also look to the pharmaceutical companies to help us move the needle too. Right now there are large amounts of money being spent advertising about the new treatments that have been recently approved. Let us use these ads as an opportunity to educate the general public about migraine disease. These ads could help people who may be living undiagnosed to realize that they should seek care. I feel like many of the ads today miss the mark. They just show what it looks like to be happy and celebrating life (with the new treatment), but offer no education about what it looks like to be impacted by this highly stigmatized disease.
Every person and every patient is a unique story. As I have grown to be more involved in advocacy over the years, I have noticed a change in the way I manage this disease. Ten years ago I was flailing and fighting this disease in all the wrong ways. I did not feel like I was being heard and I did not feel like I had much control. Every checkup with my headache specialist was filled with anticipation around what we would try next and how long I would have to wait to know if it worked. With advocacy and self-education, I have moved into acceptance. I understand that this is a lifelong disease and it is up to me to make the best of my situation. There is still a lot I miss out on and grieve for, but advocacy helps me feel productive and challenges me. Though it may not bring a cure for me in the immediate future, I believe I am moving the needle on migraine disease.
This article originally appeared at https://headachejournal.onlinelibrary.wiley.com/doi/10.1111/head.13826
Miriam Edelstein’s advocacy story is written and told by Miriam Edelstein and edited by Miles for Migraine team. Miles for Migraine’s Advocacy Stories highlights the many different ways that health advocacy shows up as individuals advocate for themselves and others. This project is not limited to migraine and other headache disorders, nor is it limited to…
How did you get involved with Miles for Migraine? I became involved with Miles for Migraine 3 years ago and wish I would’ve become active much sooner. My Headache Specialist told me about Miles for Migraine for many years but with intractable chronic daily migraine and a daughter playing field hockey year round throughout her…