Comments from others

[BlueLizard12]

I get a lot of comments from others saying things like "it's all in my head" or "I'm imagining it" depending on who it is or my mood I may have no problem advocating.... however whenever I don't want to get into it, or it's someone I don't want to know my business, I often feel like I just have to stay quiet. Does anyone know what I could say to advocate without giving away anything about my condition?

[Lucy-15]

Good morning

Hope this finds you as well as can be today.

This is always a tough one I find, even after 8 years ! But as soon as I read your question, I remembered reading exactly this in fndhope.org. So here is the link - Hope you can read it ok.

All depends on who is asking as to which version you feel you’d like to give -

fndhope.org/fnd-guide/commo...

Hope this helps.

Also, it’s a balance as I feel it’s important we try to spread the word when we can, so that this rare disorder is heard about more and more.

Lucy.

[BlueLizard12 in reply to Lucy-15]

Thank you so much! Reading that was helpful very helpful. I definitely want to try to slowly build confidence to spread awareness.

[Batty1]

I have psoriatic arthritis and I hear all the time from my sister and mother if you would just get up and move more you would be able to overcome this pain ….. I laugh my sister is now having the exact same issue in her feet that I have been dealing with for 6 years she said to me the other day how in the world did you function for 6 years with this crippling pain in feet ….. I told her suck it up and get moving you will feel better …LMAO

I stopped talking about my condition a long time ago with family and friends its not worth my energy and karma is real!

[BlueLizard12 in reply to Batty1]

Karma really is real lol.....family definitely is the people that never seem to get it

[Batty1 in reply to BlueLizard12]

Yes family is the biggest offenders when it comes to health issues and the most emotionally destructive …I think they believe they are being helpful when really when they dismiss our health issues it actually causes more emotional turmoil…. this is why I don’t grump or talk about my condition with them anymore unless they ask me “how is it going” which I respond with so-so and leave it at that.

[BlueLizard12 in reply to Batty1]

I definitely agree, especially when they are undereducated. I have family who refuses to be educated and still want to try to tell me what I need. It is so stressful, then when I ignore it, or change subject it's "disrespectful". I've had to stop talking to family about everything including general anxiety because of this. They didn't even know I was having seizures until I was hanging out at there house, so I had to tell them.

[210272]

Hi BlueLizard12,

I don't have FND (although Jon Stone seems to think that everyone with the rare neurological condition I live with does - go figure) but people with migraine (which I also have) sometimes report hearing similar things so I feel for you. I think we all find our own best ways for dealing with these sorts of comments but I sometimes say 'if you weren't feeling well for any reason and someone made a comment like that to you, what would be the best way for dealing with it, for you?' This means you don't have to challenge them about what they've said, or respond. It also makes them reflect on what they've said and puts them into our shoes for a while, often with transformative results.

Other times I say 'wow, I didn't have you pegged as suffering from ableism. I'm so sorry, I hear it's ghastly. Fortunately it's curable.'

[BlueLizard12 in reply to 210272]

Hey, that is such a smart idea I never really thought of it that way. It really is a way to force them to reflect on what they said and see how terrible it is. And the second one I love especially when it's some nosey stranger out in public who won't shut up.

[210272 in reply to BlueLizard12]

Have to say there are times when I simply can't be bothered to respond when people infer that 'it's all in your head' because what they are actually saying is 'it's all in your mind' - erm, no. But their comments can have a negative impact on our mental health and if this is the case for you, then I would definitely bring it up with your primary care doctor.

Unfortunately having a 'functional' label of any kind can influence how we are treated in primary care and elsewhere and although most good primary care providers won't be influenced by this term (which we know is deliberately ambiguous and intended to infer one thing to patients and another to our caring doctors - see Kanaan et al's paper 'the function of 'functional' a mixed methods review' ffi) it is important to have clarity between you and your doctor about how they interpret it. Once you know what they are thinking - especially about your treatment plan and prognosis - you'll be better equipped to answer any flippant/potentially hurtful remarks from family, friends, co-workers or strangers.

[BlueLizard12 in reply to 210272]

Having functional in the name of diagnosis can definitely be misleading. I haven't actually talked with my doctors further than the typical medical side of things. A few of them about a treatment plan but that's a far as it really went in discussion. That is definitely something I will start doing, I appreciate all of your advice and help. Thank you so much!!!

[210272 in reply to BlueLizard12]

My pleasure and I hope your health care providers/professionals are open to having transformative and empowering conversations with you I am also concerned about diagnoses that come with a side order of a 'functional' label, often unbeknownst to people with these diagnoses.

[BlueLizard12 in reply to 210272]

I've definitely seen so many people get diagnosed with something that labeled as functional or functioning and not understand it, or feel so confused by it. It really is heartbreaking to see.

[210272 in reply to BlueLizard12]

I hear you. It's a systemic problem for people with vestibular/balance/motion sensations conditions since 'functional' makes up part of the over arching vestibular disorders diagnostic Venn diagram. I found it interesting that there was no patient representation when the FND subtypes paper (which was mostly about Persistent Postural Perceptive Dizziness aka PPPD or triple PD, a newly coined diagnosis) was published. And when I contacted the FND Society with my concerns about a webinar they did about it they slammed the door in my face, hurled their pride at me in the process and made it very clear that they control the narrative and patients are not welcome. My neurologist wasn't impressed and neither was I.

[BlueLizard12 in reply to 210272]

That behavior is crazy, patients should be who they want to speak to. Any condition that is so versatile and rare, patients are the best place to go. I know my neurologist would be fuming to if I told him that.

[210272 in reply to BlueLizard12]

I met a lovely neurologist at a Migraine Action meeting in the UK BC (Before Covid) and mentioned 'functional' to which he replied 'ugh, blame the patients, it's cheaper'. I could have hugged him but it didn't seem appropriate and anyway he wanted to pick my brains about Mal de Debarquement Syndrome (the rare thing I co-exist with) since he thought he might have a patient with both that and Vestibular Migraine. Now, we should keep in mind that this was in the context of migraine only, but I am aware that there's a crossover between migraine and FND, in some cases at least.

And yes, unless and until organisations like the FND Society (who won a 'very bad patient engagement award' when I was trying to prevent them from bringing their society into disrepute) put patients at the heart of everything they do, nothing will ever change. They did have one patient rep at their conference this year (FND-Portal) who got treated like a 'rockstar' so I guess that's a start but it does feel like 'too little, too late'. Plus any questions to the panel got moderated so they still come across as over controlling. Can you imagine a conference about Schizophrenia where questions got moderated? I can't.

Thank you for your comment - I really appreciate it since advocacy burn-out is a thing so comments like that help keep me motivated

[BlueLizard12 in reply to 210272]

That doctor definitely has an understanding of how that word affects people. It does feel like it almost is to late, hopefully they can do more quicker, and stop monitoring so much.

[MONIREN]

I feel for you, I find family the hardest, they think positive thinking will help. Friends barely care enough to ask, public are the most caring. They wait as I stumble to speak or look the other way when I jerk, or they try to help. My gp has often upset me with her lack of understanding, but when I look at what she is handling on a daily basis, I excuse her lack of empathy. She has my back and fights to help me, I think sometimes we react to words differently, depending if we got any sleep or how many things we battle with. In the end of the day, it's only us that has to live with this weirdness 24/7. Maybe we need a celebrity to spread awareness, without them getting it, I would never wish this on anyone. Please take care. Stop and marvel at creation. Breathe!!

[BlueLizard12 in reply to MONIREN]

Thank you so much for your reply! It truly is hard sometimes to remember not to react, yet respond to things. It is definitely something I need to work on as I heal from my past trauma. I definitely agree somebody needs to help spread awareness on rare conditions.

[210272 in reply to BlueLizard12]

What concerns me is that people with a FND dx are still experiencing 'scorn' and 'trauma' in medical settings (according to FND-Portal, whoever he is). That needs to stop. I attended a webinar about the new Good Diagnosis guide from Genetic Alliance UK (I've posted about it in this forum) and found myself representing for p/w a FND diagnosis as much as I was for people with the rare condition I have.

Thankfully there are loads of organisations who are raising awareness about rare conditions (there are now estimated to be over 10K of them), many of which are misdiagnosed as Conversion Disorder/FND initially. There are also organisations like Medics4RareDiseases who are helping doctors to 'dare to think rare' and training them to consider rare conditions when they see patients.

[BlueLizard12 in reply to 210272]

I definitely have read stories as I've done research, that so many rare conditions getting misdiagnosed as FND before they rule of every other possiblity. They definitely need to get more doctors doing this. So many people with chronic illnesses, and others who get dismissed will get the help they need.

[SNOW10]

Nothing but tell the person, "you better hope you never get it",can affect anyone at anytime.

[BlueLizard12 in reply to SNOW10]

I like that response for nosey people

[SNOW10 in reply to BlueLizard12]

I found that majority of people are judgemental coworkers, doctors,nurses, and most family. So it indeed do suck and I hate your having to endure the same struggle as us.

[BlueLizard12 in reply to SNOW10]

Most people do just judge nowadays, it is sad to see. Thank you for your support!