I know for many self-advocacy is difficult. It is time consuming. It is hard to do when you are in pain. It is frustrating, being sent from one person to another and back again. It is discouraging dealing with unfriendly people, and it can be incredibly hard to find a good doctor to work with. In short, it is not easy! However, it is something we all must learn to do in order to get the very best treatment we deserve for our health. Here is a little bit of my journey of discovery that advocating for myself could make all the difference in the world.
I can vividly remember my first migraine at about age 10. My favorite cousin was spending a few days with me and the migraine came on strong the day we picked her up. In those days, our only remedy was two aspirin. The pain was searing, stabbing and intense. I vomited a couple times and just wanted to curl up in a ball alone. Eventually I recovered and, while tired, I was finally able to enjoy her company. Of course, no one, including my cousin who just wanted to play with me, understood what I was going through. They had never experienced a migraine themselves… or barely even a headache!
Not All In My Head
Through my childhood years I had other types of pain also. Our small town doctor found nothing wrong and told my mother it was “all in my head.” I didn’t understand how this could be possible! Although I was a shy, introverted child, I was very happy and my family life was good. I knew I was experiencing horrific pain and couldn’t fathom why anyone would think I would make it up.
Throughout the years, what that doctor said has continued to haunt me. My migraine pain was very real, and I knew it, but the doctor I saw did little to try and treat it and minimized its reality. Despite having other ongoing medical problems I rarely went to the doctor, despite often being in severe pain. I simply added them to the list of being “all in my head.” At one point I needed to have emergency gall bladder surgery, which took me several weeks to recover. Had I gone to the doctor sooner, rather than putting up with the pain, it would have been a simpler procedure and much quicker recovery.
Time To Advocate for Myself
Honestly, I didn’t have time to think about being in pain. I was active, worked full time, raised two children, attended their events, and volunteered. I took advantage of a very high pain tolerance and refused to let pain stop me from living. However, two things happened in my life and I finally learned that I had to be my own health advocate and take care of myself. I started to become very sick with vertigo and then lost my hearing literally overnight. Forced to seek out doctors, I finally found good ones who would work together with me on treatment plans.
Eventually, my migraine, which had been up and down since age 10, became chronic. I began to see a specialist instead of my GP. Then as the medication I was on stopped working well, and my doctor ran out of ideas, I began to search for a certified headache specialist. I am still not migraine free and I still struggle, but now I have a doctor who is willing to try different things, who listens to me and who is very supportive. Having a doctor like that makes all the difference in the world!
Advocating for Yourself Is Not Easy
I might add, it is not always easy to advocate for oneself! For me, I am now totally deaf. I must use a special phone and the words don’t always come out right. On top of that, there is a time delay and the operators sometimes leave in the middle of a conversation! With all the new medications I often have to call the insurance companies, doctors’ offices and pharmacies to appeal denials. However, had I not pushed to find doctors who would work to find the best treatment options for me, I would be in a very different place. Most likely, I would still be at home, in pain all the time, and thinking, “I can’t go to the doctor because they will tell me it is all in my head.”
I try now to encourage others to advocate for themselves. It is essential to get out of our comfort zone and make those phone calls. It’s so important to get on our patient portals, write the emails needed, and talk to our doctors. Even to look for a better doctor when needed and not accept second or third best. It is also very important, even when in pain and feeling discouraged, to keep a good attitude. It’s ok to be persistent and firm about what we need, but we truly do reach people more effectively when we can talk to them kindly.
First Steps of Advocacy
So, don’t wait! Make that call or write that email. Be informed about your options and find a doctor who will partner with you. You will feel a burden lifted off your shoulders. And once you find the right doctor, or get a prescription finally straightened out, encourage others you know to do the same thing. To advocate for the healthcare they need and deserve. We are migraine warriors, we are strong, and what we live with is not “all in our heads.”