A Letter to Our Doctors (advocacy for mobility aids)

[CAbad9]

Hello all!

In my last post, I asked if anyone would be interested in participating in a day where we send our neurologists and doctors letters/emails advocating for referrals for mobility aids.

The date that I’m sending my email is June 17th and you all are welcome to join me and are also welcome to reach out support post response from your doctor.

The outcome may not be what we hope. But this little step can lead to more steps as a community to advocate for our symptoms to be treated with care!

Below is a mock up letter/email. Please feel free to tailor it to your voice!

Whether or not you participate, you are making a positive difference by being alive!

I appreciate your life and your voice💕

Dear Dr. _________,

There has been a history in the medical world of oppression, exclusion and injustice toward any group of people whose symptoms do not fit the limited medical knowledge of “diseases”. MS and many other forms of autoimmune disorders, are prime examples of people whose symptoms and diseases were not always understood or acknowledged by the scientific community.

Though FND ( Hysteria, Conversion Disorder, FMD, etc.) has disabling physical symptoms, the care of the PEOPLE who live with these symptoms are told that their emotional/psychological care and physical therapy is the conduit to curing these symptoms.

I am a part of a community that do not believe that these types of care are enough.

We need aids to get to those physical therapy appointments. It is not always appropriate to be told by our physical therapists that these aids obstruct our pathway to having our symptoms absolved, when these aids will help us to live more mobile lives, resulting in better psychological and physical health. Is this not the goal of the medical community?

In a time where change and injustice is being shown for what they are in many areas of our current culture, the time for this terrible diagnosis FND and all the historical names that have labeled the people living under these disabling symptoms, to be called into question and examined for misogyny, racism, classism, and other prejudice that hinders the care of those who live in daily pain.

We are not asking for research or another appointment from a doctor to be re-examined for a different diagnosis (this should already be happening) but we are asking for walking aids, mobility aids, referrals for accessible parking permits, and any other aids to help us LIVE in our communities.

You, as a doctor, may not have full access to grant this request; but we are asking for you to be transparent with how much power you do have to help us get the aids that we need.

This is an email that is being shared by a community of people living with FND and we will continue to spread the word on this topic, until there is change.

- Name

[Prosaic_One]

WOW! Activism, I love it! I realize most of you are in the UK. I’m in the US and not sure how our medical communities vary. Can I ask, are you denied walking implements by your doctors? That’s awful if so & as someone who was first misdiagnosed w/MS (for a decade), I can affirm that the moment FND became my diagnosis, my treatment from medical staff shifted violently.

Yes, here we are told if we have an episode, it’s due to emotional stress, which always places responsibility on ourselves. Change your lifestyle, diet, exercise, therapy, etc.

I’ve given up having productive talks with my neurologist. She does nothing to help, preferring not to even prescribe many meds because we are “retraining the brain”.

They clearly don’t care to understand the full scope of how this illness affects our lives. No one cares how much I suffer or that I can’t sleep at night. There’s been much trauma solely from being ostracized by the medical community.

[Riley-Roo in reply to Prosaic_One]

Well said! I too live in the US and run into obstacles far too often from the doctors and what my insurance will actually cover. I am finding it difficult to find doctors that actually know and understand FND. I did find a very good Neurologist but outside of his office my care has been less than adequate. We do need to pass along new knowledge about FND to our doctors and insurance companies so we can get the things we need to live with this condition.

[Prosaic_One in reply to Riley-Roo]

Absolutely. I finally have a team of doctors I trust but new symptoms or a change in my condition has landed me in many hospital beds. Those have been the most horrifying cuz most specialists outright tell me they’ve never heard of FND. Then when I’ve been unable to communicate much, they ask ME what drugs they should give me. Every single time I have to instruct them on how to treat me. Problem: I’m in the ER cuz I have no idea what can help me and I’m trusting these people to heal me.

Been injected w/so many drugs administered just as a “let’s try this & see what happens”. Now when I have seizures, I just take care of myself & hope for the best. It’s depressing & unfathomably demoralizing.