This will be a multi-part post. I'll share my story, and then I'll lay out some guidelines to use in your own journey (First Step and Step by Step).
I’ve been there. It can be a time of mixed emotions. Anxious. Overwhelmed. Scared. Exciting. Hopeful.
I’d known for a long time that my doctor was out of treatment options for me to try. He did his best to help me maintain, but he had nothing new in his toolkit to offer. Despite him outright telling me multiple times over several years that this was the case, I wasn’t able to hear and accept what he was telling me.
Honestly, I was afraid. I’d been with this doctor for 7.5 years. He was the first headache specialist I was referred to in the year following my car accident (The Battle Begins). He had helped me through so much, and I was comfortable with him.
- I was afraid of starting with someone new.
- I was afraid that I’d have to retry failed treatment options.
- I was afraid I’d have to prove and defend my pain and disability levels.
- I was afraid of the monumental task that starting with a new doctor while having such a complex medical history felt like.
I had spoken with a couple doctors at patient conferences about what was important for establishing a new relationship with a healthcare provider. This helped ease my mind a little bit about what I needed to do to prepare, but it still took me a year or two to get to a place where I was prepared to take that step.
My doctor was very supportive and kind about me moving on to a different headache specialist. He sent the referral and continued my care until I could get in with the new doctor.
I prepared a lot at home for that new doctor, but much of it was to make sure my mind was in order... for me, having order can help ease my anxiety, even if only a little bit.
My first appointment with my new headache specialist was incredibly smooth. I had submitted all of the new patient paperwork prior to the appointment. I never felt like I had to defend myself in any way. He didn’t question how much the pain has disrupted my life... he trusted my word. That was hugely uplifting and powerful. Since each doctor has different preferences about what they want tracked, I clarified that with him on our first visit. We also discussed expectations for communication between visits and for emergencies.
I left that visit “grateful for renewed hope with a new specialist. Looking forward to this chapter, as it already promises opportunities to make positive changes in my life. The road won’t always be pleasant… sometimes it’ll be downright miserable… but, I have a good support team that knows I can do it, even when I’m uncertain.”
I only saw this doctor a few times before I moved a couple states away. I struggled with separating from a doctor that was a true treatment partner. We had barely scratched the surface, and the fear that I may not find another doctor that I trusted and would be a partner in my care lay heavy on me.
Time to start over... but on a much larger scale, as I would need a new dentist, eye doctor, and primary care doctor, in addition to a headache specialist. It felt like a heavy task, but it was no longer monumental. There was a sense of hope that getting new perspectives of my health might reveal new possibilities in treatment and quality of life.
I chose to find a headache specialist first. My previous doctor referred me to my current doctor and continued care until I could be seen.
My first appointment with my current headache specialist was a lot like the previous one. I submitted all of the new patient paperwork prior to the appointment. The appointment was smooth, which I attribute partially to me continuing to hone in on my experience. We, too, discussed expectations and ensured we were on the same page as one another.
That appointment initiated a series of consults and testing to address other health concerns and comorbid diseases. I saw around 8 new doctors (in addition to testing) in the following 5 months. Each doctor needed my story, but from a different vantage point... from the vantage point of his/her specialty area. It was exhausting, but I learned so much.
I realize that not everyone has access to a headache specialist and that not everyone will have a smooth, positive experience. There are not even close to enough headache specialists available (there are less than 500 in the United States), and most doctors don't receive much education about headache medicine. All we can do is be prepared to do our best to find a healthcare provider (even if it's not a headache specialist) that is willing to partner with us in our care.
"The fears we don't face become our limits." - Robin Sharma