‘You may have a medical certificate, but you don’t have a certificate in me.’: Woman with rare disease pleas for doctors’ compassion, trust

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“One symptom of my Functional Neurological Disorder is dissociative seizures. These happened frequently Saturday night, while I was at Jake’s watching a movie. I have now had over 70+ since that time.

Obviously, it’s very petrifying for him to watch me lose consciousness repeatedly, and he called an ambulance. Unfortunately, my experience with the paramedics wasn’t the best. The staff in the hospital have been fantastic, listened and been super supportive, and I can’t thank them enough for comforting me. But it’s a shame there are some individuals who still haven’t learned to do so.

Dear all medical professionals, care assistant staff, and anyone who speaks the human language:

If you see someone displaying unusual behaviors you may have not seen before, and are not typical of any other conditions or don’t fit into a box, please do not presume the individual is ‘faking it’ and can ‘turn it off’ at anytime.

If you are really unsure what’s going on and have asked them why this happens, and they have explained what they have and how the symptoms and their body work, please do not question that person’s knowledge or discredit them by doing lots of googling… even though they said, ‘No, this is my diagnosis from the neurologist.’

Please do not question the validity of the condition just because you’ve never heard of it.

When a patient is showing extreme body movements or jerks, please do not tell them off and tell them, ‘You can stop that.’ The patient would love to. Trust me, they do not want this.

When you become frustrated because the patient can’t meet your request, even though they are clearly trying, and you go to intervene, please listen to them when they say, ‘No, don’t do that. It hurts.’ It’s agony for us. We did not need you to grab us and move us with force because you couldn’t wait 30 seconds for us to move our bodies in our way.

When the patient is drifting in and out of consciousness and their relative or loved one is explaining what happened, please do not dismiss what they say because it doesn’t fit into your medical box or check list. Please listen to them even more than the patient at times — they have been through this journey with them and have watched this day in day out, and sometimes the patient forgets or doesn’t realize certain details their loved one does.

Please do not imply the patient is not really feeling the way they are.

Please do not ‘huff and puff’ at the patient when they black out and can’t give you their address. Then, when they do come around, please do not smirk and imply that wasn’t real.

Just because you think the patient is becoming paranoid, please do not say, ‘It’s not [fill in the blank] condition, you know.’

Please do not make some comment about how bad I look when I spasm. ‘You don’t look normal when you do that,’ goes through my head 100,000 times a day.

Please do not then say how lucky I am I’m not single and my guy hasn’t left me. Please do not say, ‘No one wants responsibility these days. I’m surprised he’s stayed and is willing to stick with you, especially when you look like this.’ You don’t have a clue how brilliantly strong he is and how he literally is a real life superhero.

Yes, I do know. I know exactly what this is. I know this is FND. I know seizures and blackouts can be a huge part of my condition, and I haven’t started to experience them until now.

I know my brain and nervous system are disconnected and no longer talking. I know my ‘automatic systems’ are in overdrive, no longer communicate, and my brain signals go anywhere else then where they’re supposed to be.

I know my fiancé watching me consistently lose consciousness was terrified, and he called you not knowing what’s happening. I know in that moment he needed reassurance, and most importantly, to be listened too.

I know how amazingly luckily I am to have found someone who is strong and supportive of me, and to be truly loved. I also know my worry of this disorder breaking us is very real, even though Jake reassures me every day it won’t.

I know how some compassion and a listening ear can go a long way. You may feel confused by me, and you may have never seen anything like this before, but please let me help you become less confused.

Now, I’m talking about this in terms of my FND, but this goes to so many people with autism, learning difficulties, chronic illnesses, MS, and the list goes on. Just because my face and body look normal, doesn’t mean my body and brain are operating normally at all.

If you have not heard of my condition, that’s okay. I don’t expect you to know everything. However, please do not ignore and dismiss the information given to you about it. There are so many conditions out there and it’s impossible to know how to respond to them all, but patience, kindness, compassion, and a belief in your patient is a good place to start.

You may have a medical certificate, but you don’t have a certificate in me.”

Woman smiling with thumbs up
Courtesy of The Blondie Northerner

This story was submitted to Love What Matters by The Blondie Northerner of Northwest England. You can follow her journey on Facebook. Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos.

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