Written by long-time rare disease and Stiff Person Syndrome (SPS) advocate Angela Davis

A few weeks ago I finally went to the most highly recommended academic neurology clinic in my state. I’d waited a year and a half to secure this appointment, and my husband took time off of work to drive me to it.

It was a heartbreaker that the empathy and interest ended at the check-in desk.

I informed the clinic I required a wheelchair a week in advance when I filled out their online accessibility needs questionnaire they sent to me.

But when I got there? No wheelchair, no help. I had to push myself while leaning on the handrails all the way to neurology.

When I reached it in time, one kind young man called me up to the front desk to verify my ID. I grasped it in my pocket and handed it to him. He paused to look at me and simply asked, “Are you ok?” He was so kind and concerned that his compassion stunned me.

He could see I was struggling to hold on to the desk and remain upright as my muscles went into contracture, the full body squeezing rigidity. He raced to grab a wheelchair. He also noticed I was bleeding from the hand I used to lean on handrails to haul into the clinic, and he immediately went and got me alcohol swabs and bandages. His genuine care from one human being to another was a great gift and should not have been so shocking to receive. 

I thanked him and a kind nurse wheeled me into my exam room. Plenty of time to verify all my info as well as for my husband who was stuck parking the car in an overflowing garage to enter the room. We sat together after the nurse departed assuring they, the doctor and the fellow who worked with him, should be with us pretty quickly. We waited another 20 minutes, so 35 minutes of my 45 appointment vanished. 

Suddenly, the fellow entered with a round of questions previously answered with the nurse and sent by my referring physician. When I just tried to correct a statement he kept reading off of the computer because it was inaccurate in my case, he told me not to interrupt him: just yes or no answers only. I told him if it is not correct info about me I’m going to say no and why. It was as frozen as an iceberg in that room because there’s just no time to be courteous to the patient. 

He basically did all of the work, conducted the full physical exam, and hurried out to grab the neuromuscular doctor who everyone told me treats Stiff Person Syndrome. So this doc walks in with a rush of even greater frozen indifference and pure irritation that I was there to seek his care. 

The first words out of his mouth were “well, I can’t work magic,” with sarcastic laughter. I told him I certainly did not expect any magic, just some medical attention. He grew silent and proceeded to sit right next to me instead of across from me so he could look at me when he talked. I had to scoot off a bit from the exam bed and turn my neck to force him to meet my eyes when he spoke.

I realized this entire cruel, inappropriate approach to an SPS patient was the type I received 30 years ago when doctors still had me misdiagnosed with a disease I did not have. Somehow, medically, we flew backwards on a twisting slide to 30 years ago. Where had all of the hard won progress that once existed gone?

He was first annoyed at “the extensive medical history provided” in my SPS care, which most doctors require and appreciate very much. It was all sent to him so he was given everything he needed to know in order to assist me with proper expedited care. He arose only to re-check my reflexes which were of concern to the fellow. He expressed no concern other than boredom. He sat back down next to me and said “no one in this state will give you any pain meds for your intractable acute pain syndrome.” 

I told him I knew full well that no one offered pain meds though I’d always been prescribed a basic amount because my neurologists until now told me in order to be functional, I obviousy required the usual regulated amount as well as a medical cannabis prescription. I emphasized I was not there to “drug seek” and I had not even mentioned it until he brought it up because he knew I needed it upon examination. 

The cannabis prescription helped the most with softening my concrete muscles, as well as diminishing the pain. He just rolled his eyes and sighed.

“Yes, I know you know it works,” I said, “but this state will not even allow you to prescribe that either, will it? Yep.”

That was why but his frustrations were all taken out on me, the patient, something I thought was improving until this moment.

The cruelty of a state forbidding incurable rare disease patients any kind of acute pain relief when folks who use it out in public illicitly without consequences is another example of rare discrimination.

“Well, there’s nothing else I could do! I mean, I would have done everything already in your history.” I then asked him to request updated bloodwork checking antibody and paraneoplastic markers as no one had checked them since 2016, and I was told they should be checked for my safety.

He shook his head ok, he could do that and he would get back to me with the results. Fine. That was all this top tier medical center could do for me. 

When he got up to leave in a hurry, he waved goodbye to my husband who was fuming. The fellow then got up to run off, and he actually ignored me sitting on the exam bed, and attempted to high-five my husband and tell him, “Have a good day, bro.” I miss seeing more women in the field of rare neurological care for SPS patients especially.

It was the most bizarre waste of time that my body paid for physically days afterward due to all of my forced physical exertion. My husband was so full of righteous anger, and I tried not to lose the thinnest thread of hope that I could receive any kind of courtesy or care from a medical provider. 

The doctor told us we should have the blood results within a week. After three weeks, the results finally popped up in my online chart. I read them, and I have my own knowledge as well as my PCP’s and local neurologist’s near my house to review this info, but this doctor who promised to contact me never bothered. Saddest part is I am actually relieved I did not have to hear from him at all. 

You better believe I completed the appointment evaluation from the clinic. Who knows if it even mattered at all, but I always provide thorough feedback so no SPS patient or any other patient has to endure this exhausting and pointless process.

You can do everything right as the rare disease patient, and it still can end up in “a kick you to the curb” mean-spirited experience. 

Yes, I get acupuncture, and that helps me the most. I struggle just to make it to my regular medical appointments. Often I cannot make it to these urgently needed regular appointments because my SPS is too severe, and I am a ball of permanently contracted muscle. What would be true help for my SPS is for Johns Hopkins to accept my BCBS insurance so I can be seen where they know me and they know what to do to for SPS. 

Through my own network of friends who experience similar pain suffering, I have learned about gummies available in state with a legal form of pain relief known as THCA. They absolutely help! My tenacity has paid off best when I just connect to fellow acute pain patients, and I find some relief at least!

With the evil threat of Medicaid that provides access to life-saving rare disease and disability physicians as well as prescriptions and therapies up on the chopping block, more of the rare and disabled community needs to know they are not alone! Just take a look at my ongoing saga as one example.

I am always partnering and working with fellow SPSers, rare organizations, and publications to advocate with our entire global rare disease community. We hold true to each other and refuse to stop fighting for our rights to medical care and skilled attention. We have to be our own heroes. 

We welcome more extraordinary rare warriors in this battle in any way we can all join and win together.