I am angry. How often are we too afraid to say those words or feel that emotion? This last week has been a frustrating cycle of medical bureaucracy for both me and my friend Holli who has Myhre's as well. I had to fight to make a simple doctor change because of a policy put in place making it against the rules to change physicians. Holli was dealing with severe pain and immobility.

My story is almost identical to hers with our spinal issues. My spine was forming extra bone which caused the vertebrae in my low back and neck to fuse together in an abnormal position. Last year, my surgeon removed the extra bone, put an artificial fusion in place, and restored the normal curvature of my spine. We knew she needed to see a surgeon.

In Holli’s case, her issues are more severe than mine. She cannot move her neck. When I say cannot move it, I mean she is unable to drink from a cup without using a straw. She cannot turn side to side without moving her entire body. Her. Head. Does. Not. Move.

Because of an organizational policy, she was forced to jump through hoops before seeing a surgeon. It would be months before she could get in. One of those appointments was frustratingly redundant as so many of them are with a rare disease. The doctor did not know about Myhre’s. He did not understand the impact on her life. He did not listen or provide compassion when she needed it.

When Holli asked about all the ways this was impacting her like working, driving, and just about everything else, the doctor said well, you might have to give up the things you enjoy and go on disability. In stunned silence, Holli and I sat with our jaws hanging open.

WHAT JUST HAPPENED? How did we get here to her being disabled in one short hour?!?

Although Holli is a resilient person as am I, sometimes it is all too much. This was one of those moments. Then we both got mad.

Here is what I want you to know. When anger kicks in because of being misheard or misunderstood, harness it. We did. We put our heads together to formulate a plan to get Holli in for a surgical consult sooner. We used the resources we had to make the change we needed. We ended up moving her surgical appointment up 60 days.

It is ok to get angry. It is ok to push back at the system. It is ok to be the squeaky wheel. As people with a rare syndrome, sometimes this is exactly what is needed. This week has been all about being a squeaky wheel both for me and for Holli. It has also been a week of exhaustion and overload as I navigate my own appointments as well. This syndrome is not easy. More to come on that next week.

As always, I am here for you. Feel free to contact me at pschultz@myhresyndrome.org

(shared with permission from Holli Dillard Cranfill)