An Open Letter to Doctors

Dear Doctors:

We come to you for help. We come to you already scared, frustrated, anxious. We don’t need any additional added to us. What we don’t need is for you to medically gaslight us. That’s not acceptable. Not in any way. We KNOW that as a rare disease patient, or a chronically ill patient we can be complex. We already know this. We don’t need reminding. Many of us struggle with being heard. Unfortunately too many of us have been dismissed, belittled, ignored. Too many of us have been gaslighted by those that are supposed to help.

Medical gaslighting is term used to describe doctors or medical practitioners who blame a patient’s illness or symptoms on psychological factors, or deny a patient’s illness entirely, for example wrongly telling patients that they are not sick

This is prevalent in the chronic illness/rare disease community. So many have experienced. Oddly many have experienced this with neurology. Neurology seems to be the one specialty many of us experience this with. However, this does not just happen with neurology, but many specialists. So many tell us it’s in our heads, go to counseling, or we’re just looking for something to be wrong. We’re easily dismissed. This leaves us frustrated, confused and angry. Some patients have developed PTSD from the traumatizing experienced within the healthcare system. We experience negativity, dismissiveness and unacceptable behavior from doctors to the point we have developed PTSD.. That is extremely concerning. This is causing us to mistrust doctors, some even avoid them for years for fear of this reoccurring.

What prompted this “letter” you may ask? Well, I was referred to a neuromuscular doctor, I saw him about 2 months ago. He was great at the first appt. Said there were signs of ataxia and MS. I saw him again August 9th. He did a complete 180. Appt was less 10 mins, closer to 5. He said no MS, which is fine. I asked if my EDS diagnosis plus my collagen gene mutation could cause the muscle fatigue and such. He said maybe. Then…then he really upset me. He said “let’s not look for anything else to be wrong ok?” Not the worst to say but still awful. Obviously I don’t want extra diagnoses. However his next comment and note in my chart really solidified why I struggle with neurology as a whole. He stated at some point if surgical intervention is needed, a psych evaluation should be done beforehand. I have never asked for a surgery or test. I have never been through a surgery that was not absolutely necessary.

What?! Why? I’m genuinely baffled at why this is always what doctors fall back to. It’s insulting and so unacceptable. I posted my experience in several support groups. It was overwhelming by how many have similar experiences with not just neurology, but many specialties. Many specialties do this. As a Dysautonomia patient, neurology is one of the specialists to follow that diagnosis. Yet, many don’t want to, or they’re dismissive. Our symptoms are real. Our pain is real. Our concerns are real. It’s not all in our heads. It’s not just mental health or depression. Yes, we can develop depression and anxiety. However, let’s look at it subjectively. We’re chronically ill. We go to doctors to help us. We’re turned away, dismissed, ignored, told to go to therapy. How could we not develop anxiety, or depression? Perhaps BOTH are reactive to what we’ve experienced? Perhaps both are reactive to living with a life altering diagnosis?

Yes, I’ll say there is some depression. Yes there is some anxiety. However it is most often NOT the cause of our symptoms. Some already attend counseling in practice of mental health and self care. Not everyone with chronic illness is depressed. Not everyone with chronic illness has anxiety. You CAN be chronically ill and have STABLE mental health. It is possible. I am a strong advocate of counseling, and self care. A strong advocate of discussing mental health within the community.

We want help. We want to be listened to. Most importantly, we want to be HEARD. We want to be treated with respect, kindness and compassion. We want to work with out doctor as a team. We want to trust out doctors. We want to work together. We want open communication. If you don’t know how to help us, say that respectfully. Set your pride aside and think of the patient, of us.

Please hear this plea. It’s not just a plea from me. It’s a plea from the rare disease and chronic illness community.

Let’s work together to create change. Let’s work together to refine and improve our patient-doctor relationship. I have hope we can do this, together.

Sincerely,

All of us.