|Photo by Sue Robins|
I’ve often spoken at conferences about what it means to curate a good health care team, about what it means to find clinicians that enter into a truly partnership relationship with us. Having a kid with a rare disease has meant navigating undiscovered waters with charts marked only with ‘Here There Be Dragons’. If we find a good clinician we together fill in some of those dragon infested waters with information we can act on.
I’ve been the ‘good patient/caregiver’ – gone to every appointment in my smart clothes with my notebook and pen, questions at the ready, research done. We’ve presented well, but not too well. We’ve done the dance and negotiated relationships so as to maximize benefit to our son’s healthcare. It’s been 16 years of doing that. But all of this negotiation has taken its toll. All of the organization, the burden of uncertainty, of management, the coordination of care, the careful communication, has worn me down. And two years ago I couldn’t take it any longer. I was at a breaking point of being completely overwhelmed. The burden put on me by the system, the burden of uncertainty and fear, and the shear unrelenting continuity of not knowing where to turn was reaching a crisis point.
And in the midst of that, unexpectedly, unbelievably, Dr. Tammie Dewan saw me. She saw our family’s struggle. She turned towards my suffering instead of away. And where it would have been easy to say that it wasn’t in her scope, that her practice was full, instead she saw me and chose to take our son on. No, she chose to take our family on. She saw through the façade I put on for others, and asked ‘How can I be helpful?
For two years we knew that we had a medical home. We knew that the burden of coordination, of management, of communication wasn’t solely on us. For a little while, I knew that if my list wasn’t ready, it was ok, because she had it covered. I didn’t have to follow up with every specialist, because she and her staff would make sure faxes were faxed, requisitions were sent and reports were finished. Those burdens were at least taken off my shoulders. Yes, we still had the uncertainty of rare disease, but we had less uncertainty of care.
It has been a sweet, sweet relief.
But more than anything, it has been a relief to be seen. To know that I didn’t have to pretend to know, or not know, or manage a relationship in order to get the best care. To know that she turned towards us, and saw us. She asked us our goals. Asked our son his goals. And worked to keep seeing us for who we are.
I don’t say this word much, but that has truly been a blessing. When so many turn away from pain, she turned towards it.
I don’t know what we’ll do now. I’m scared. And sad. But so grateful for the time that we had with her. I wish her the best in her move. Her patients in her new practice are so very fortunate.
If you’re a healthcare provider and you’re reading this, I ask you two things; Do you turn into suffering? Do you choose to see your patients? Their families? Or just their symptoms? Because the latter may make you a good doctor. The former will show you are a healer.
Thank you Dr. Tammie Dewan for being both a doctor and a healer.