Elizabeth Arant’s Advocacy Story

Elizabeth Arant’s advocacy story is written and told by Elizabeth Arant 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 individuals that personally experience a health condition.

Elizabeth Arant’s Migraine and Headache Disorder Story

As a young child, I always knew I would work in health care in one manner or another. I dreamt of having the knowledge and the compassion to do so.  I was accepted right out of high school into a highly competitive Bachelor’s Program for Nursing; There was no doubt, this is what I was meant to do.

When I was at university, the unthinkable became a reality; my once under control migraine disease started to become chronic. Once chronic, I was able to work for about 12 years as an RN. I sometimes worked full time and occasionally worked part-time, but I was able to continue working and stay out in the community.

About 10 years ago, the nature of my headache began to change character. After much investigation, I was diagnosed with intracranial hypertension, which is a rare headache disorder that affects 1: 100,000 people. Since my diagnosis, I have been hospitalized for months at a time and undergone too many brain surgeries to count.

Elizabeth’s Advocacy Motivation

I am currently not working due to my medical condition, and miss it terribly. I am no longer the RN taking care of patients; rather I am the patient in bed. My nursing colleagues try to understand, but until you are in my shoes it is impossible to know the issues I encounter on a daily basis.  As a patient, I know too much because of my nursing background. This makes communication difficult for me and my doctor because I know almost everything there is to know.

It is difficult to discuss those hard conversations with me, such as surgery.  As I know what can happen, the good and the bad, so our conversations are more straight forward. Whereas with another patient, less information would be known. I know that although I am not practicing at this time, I am still a nurse. I just happen to be taking a detour at this time in my life.

Elizabeth Arant’s Advocacy Story

One way that I have learned to cope with migraine and headache disease is by doing advocacy work within the migraine community. This not only keeps me occupied, but I can learn at the same time from fellow community members. There is a multitude of organizations and events to become involved in that can always use your talents! I love volunteering with Miles for Migraine at the local Phoenix race. I have met some of the most amazing advocates and lifelong friends at these events!

Another organization I work with is Chronic Migraine  Awareness.  I work as a moderator on their Facebook page a few hours a week. This is something I do during my free time at my own pace. This allows me to have interaction within the migraine community and I am always learning.  Getting involved may be a one-time event, it could be fundraising or it may even turn into a volunteer position like moderation, it’s completely up to you.  Finding your niche in the migraine community is actually pretty easy because the community is so welcoming! Please reach out to organizations like Miles for Migraine and offer up your talents.

Tell your Advocacy Story

Do you have an advocacy story to tell? What is one of the most memorable advocacy experiences in your headache disease journey/daily life? Try to recall a time when you practiced advocacy. Perhaps you shared your story, posted on social media, or attended an advocacy event such as Headache on the Hill or a Miles for Migraine event. Looking back on that experience, what did you notice? Did you experience a negative moment such as shame, stigma, or a positive moment such as joy, hope, or relief? If there was conflict, did you resolve it or was it a conflict that still affects you today? If the outcome was positive, how did that make you feel? Did the outcome cause you to advocate again for yourself? How has your most memorable story shaped you today? There is no right or wrong way to share your story.

Donate

Are you inspired by these advocacy stories and want to donate to  Miles for Migraine? All or part of your donation may be tax-deductible as a charitable contribution. Please consult with your tax advisor. Funds raised help with our operational costs so that we can continue to produce races and youth camp events. Money raised through donations and race registrations goes directly to medical organizations researching migraine.