Jill Dehlin’s Advocacy Story

Jill Dehlin’s advocacy story is written and told by Jill Dehlin 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.

Jill Dehlins’s Advocacy Story

Early in my migraine journey, I had to explain my disease and how it impacted me physically. A friend was having an open house. She is an interior designer, and I was really looking forward to seeing her work so I had rallied myself to attend even though I did not feel well.

I was sitting off by myself when a mutual acquaintance walked over and began to talk to me, asking me how I had been doing. So I was completely honest with her: chronic migraine disease had forced me to drop out of a doctoral program. I did not have the executive functioning to complete my dissertation. My short-term memory had significantly deteriorated, and I could not remember what I had said on the previous page or paragraph when writing. I even forgot how to do simple things like performing a Google search. Before I became chronic, I had created a brochure teaching my dissertation subjects how to use Google. Then I forgot how to do it myself.

I explained I was about 80% disabled, and I was experiencing head pain every single day. I was discouraged and not feeling good about where I was at that point. So, how did she respond? She proceeded to tell me about her,  “one bad headache,” so she could claim she knew “just how I felt.”

How Jill Felt by Sharing her Story

I was aggravated, frustrated, and felt unheard. Yet I learned a lot from that experience:

1) Don’t let your disease define you.

2) Don’t be angry about stigmatizing statements from others. Use it as a “teachable moment” to educate them about your disease.

3) Most of the time, people just want to help. When they suggest something like a banana on the forehead, a smoothie with ingredients you are allergic to, vitamin supplements with no efficacy studies related to migraine, or when they ask you why you haven’t found “the answer” to your medical problem, just say “thank you for thinking of me,” and move on.

Jill’s Story Made a Difference

The experience at my friend’s home was an “ah-ha” moment; I realized that I had to advocate for myself. As a nurse, I had advocated for my patients. Four years into my chronic migraine disease, I was wary of my doctor not listening to me. I decided to tell him he either needed to hospitalize me or refer me to a different headache specialty clinic. He hospitalized me.

Afterward, I finally started to improve, but I was ashamed I had waited so long to advocate for myself. And then I realized that if I, a nurse and patient advocate for others, could not even do it for myself then others were probably in the same boat. It is at this point in my journey that I began attending headache specialty conferences for physicians, and I became a migraine advocate. I needed to know as much or more than my own physicians.

We need to be empowered to have candid discussions with our providers so that we can obtain the care we need and deserve. Doctors can’t read our minds. Our care partners can’t either. If we need help, we have to ask. And we can’t ask good questions if we don’t know enough about our own disease. It is really important that we educate ourselves so we can educate others. Sometimes this is very
difficult. But for me, it is the best course of action.

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.