How Life’s Path Helps Me Advocate

I grew up as a quiet, young Black female, in rural North Carolina. If you knew me back when I was in school, you would not believe who I am now. I was the shy student who never said much of anything. That includes raising my hand to answer questions at any point in my primary years.

I had a few issues growing up, but nothing like I do now. I did not have migraine as a child. I also never had any lightheadedness or vertigo either. None of these started until my military time.

How did I find my voice?

I started finding my voice when I joined the military. No one believed that I could make it because I was very shy. Lol. I am thankful that I did join. That is what kickstarted me opening my mouth more.

I actually volunteered for different programs like the BOSS (Better Opportunities for Single Soldiers) program and singing with one of the posts that I was stationed at. We were a group called the Choraleers. I love singing even though I have migraine disease.

How did I begin advocating?

I think it was the move to where I live now that really got me into advocating more. I had gotten out of the military and had small kids of my own. There was a special needs camp for those with Attention Deficit, that my child was going to. I signed her up and starting just helping out, because I was already there. That led to me someone becoming an actual “volunteer.” Lol.

I began to be one of the voices that helped with donations and sponsorships. With this, I had to talk to people. Being shy and doing this does not go hand in hand. It became more and more easy.

How did my role expand?

After that first year, I was asked to be on the committee. It was then my job to be the Lead for the Donations and Sponsorship committee. I did not mind because I loved to help others. Helping with this special need’s camp came second nature to me.

After a few years with this camp, I started volunteering with Relay for Life under the American Cancer Society. I did the same thing with them. I assisted with the donations and sponsorships. I was the lead for a few years, and assisted with other years.

What was most uncomfortable for me?

All of these opportunities just helped amp my voice up. I had to do things that I was not comfortable with at first:

• Calling people on the phone for business.
• Asking for donations.
• Visiting businesses and picking up donations.

This just boosted my confidence to speak up for what I think needs to be done and said. The more I pushed myself out there, the easier it was.

Don’t get me wrong. I still get a little uneasy at times. Once I tell myself to just do it, and get that first word out, it is easier.

When did my advocacy turn to migraine?

These days, I am more confident in letting the providers know if I do not agree with a medication, test, or treatment plan. They have to explain why they feel like this is more beneficial than something else. I also write down what I need to say so I do not forget the important things and bring them proof of why I believe something is/is not needed.

Many will ask me how I know so much. I have to say that I have some medical background. I took Health Occupations I and II in high school, worked as a Certified Nursing Assistant, and have an Associated in Applied Science for Medical Lab Technician and a Bachelors in Science for Healthcare Administration.

I think this is all helpful when I tell them that I believe a certain test is needed. Some doctors do not like patients like myself, but, my providers love that I will advocate for myself. In the end, it is OUR bodies and our conditions. We know how we feel, what has or has not been helping, and if we are ready to try something else.

What are your thoughts on personal advocacy with your condition? Do you speak up for yourself or have anyone else to do it for you?