What I Wish Doctors Understood About Chronic Illness and Mental Health

Dear Doctors:

We come to you for help. We come to you already scared, frustrated, anxious. We don’t need any additional negativity 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 gaslit by those who 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.

Medical gaslighting is prevalent in the chronic illness/rare disease community. So many have experienced it. Oddly, many have experienced this with neurology. Neurology seems to be the one specialty many of us experience this with. 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 experience 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 two months ago. He was great at the first appointment. He said there were signs of ataxia and multiple sclerosis (MS). I saw him again August 9th. He did a complete 180. Appointment was less 10 mins, closer to five. He said no MS, which is fine. I asked if my Ehlers-Danlos syndrome (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? Why is this what neurology always falls back to? I’m genuinely baffled. It’s insulting and so unacceptable. I posted my experience in several support groups. It was overwhelming to hear how many have similar experiences with neurology.

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 our doctor as a team. We want to trust our 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.