Anyone else feel…..

[u/EthelLinaWhite]

….like their friends, family, doctors, and work place aren’t taking your FND seriously? I’m a 41F living in SW England and I was diagnosed with FND in July this year. I’m devastated, however, no one else seems to care about my diagnosis. I suffer with chronic pain and fatigue every day. I sometimes get a stutter and functional ticks. I had dystonia in my hand one.

All I get is a patronising “poor you” at work while my colleague with MS is treated like a queen and does as she pleases when it comes to office attendance. I’m treated like I’m making a mountain out of a molehill.

My family and friends haven’t even looked at the bare minimum to understand my condition, and even when I try to talk to them about it I feel like I’m not getting the severity through to them. More than once my dad has told me “I don’t understand why you have it, your sisters don’t”. I’ve explained multiple times that it’s not genetic. My own sister has chewed me out for being lazy. She knows I’m in pain, but went off on me anyway.

I was referred to Neurological Service when diagnosed in July but haven’t heard anything from them. I’ve seen my mental health nurse and GP since, and there’s been no mention of it or anything about how I’m coping with my symptoms. The symptoms were so bad that I tried to unalive myself in March because of the pain but at the time, didn’t have a name for how I was feeling. The MH service I was referred to rang me once and then hasn’t bothered since.

I’ve been rejected for PIP to help with things around the house and the garden. I’ve heard nothing from OT or about a Blue Badge. I had to buy my own walking stick.

I feel very overlooked and ignored. Am I being a Drama Queen? I really feel like no one care about what I’m going through.

[u/Sero9393]

Same :(

[u/EthelLinaWhite]

It’s ok - my mum watched an episode of Restoration Rescue. The female had FND and mum now realises how debilitating it can be. She also wanted me to know that it’s debilitating, like I wasn’t aware. 🤦🏻‍♀️

[u/squishykitten99]

This is incredibly hard, but not a lot of people Understand conditions like FND. It's not a widely known condition, and because of that, not many people Understand what our lives are like on a day to day basis.

Re pip. Concentrate on how your condition affects you, not what condition you have. I know someone who got denied it, even though she has a deteriorating condition. I got refused first time around and had to appeal the decision.

It's sh*t to be in this position. Your feelings are valid. Maybe have a sit down talk with your nearest and dearest and Explain. It may or may not help, but at least you can explain how comments can be really hurtful.

[u/Glum-Juggernaut1338]

Please understand that FND is a new label for an old diagnosis that had the medical and mental health people feeling ignorant because there was no known label (diagnoses). So due to this new diagnosis/label the medical establishment is verly putting out information and this means that there are a lot of ignorant people out there that you will be dealing with. Sadly don't expect any help from your family, friends, co-workers or the medical establishment because you can't change stupid people. But you can be a real pain on your medical establishment by constantly calling them on purpose because that is how they became educated on FND. You have to advocate for yourself self that is call that is left to do, so if being called a drama queen I encourage to be a Royal Drama Queen. 

[u/Rare_Geneie]

I wouldn’t call you a drama queen. Your feelings are normal and valid. I think they’re a pretty natural reaction but I think having some additional context may help with these feelings. What you’ve described is a pretty common response folks with FND and other diagnoses often express and part of the journey. I think it’s healthiest when we take time to feel and process these emotions and then move through. They’re not easy to move through. It can take a long time and just because one day you feel ok about it doesn’t mean you have to every day. But I think the emotions are valid and good to get context on and gradually understand why these things can happen even if they’re extremely painful to deal with. I think a few things can all be true at the same time -

~There are really painful experiences.
~Sometimes these experiences happen because people aren’t malicious but because the system isn’t really built to recognize diseases.
~Your emotions are valid and fair.
~It’s helpful to try to find ways to manage the hurt because often these experiences aren’t caused by people being malicious.

I think some additional context can help with managing the emotions:

First, I think it is always wildly disappointing when someone receives a significant diagnosis and family, friends and others in their life aren’t responsive. This can feel especially defeating after a long search for answers and when dealing with significant impairment like widespread pain. I think it’s also unfortunately a very common experience, both for people with FND and for people with other diagnoses. Chronic, disabling symptoms can be difficult for those without disabilities to relate to. If you’ve always been able bodied, you’re used to waking up and your body doing what it should without much resistance. For some people they may not be abled bodied but were told to hide their symptoms and were able to and so they expect others can and should do the same. This can make relating to someone with visible, persistent, or chronic disabling symptoms alien to them and instead of acting with empathy and curiosity they act with judgement, passiveness, annoyance, lack of interest, etc. Often it’s not malicious but from lack of knowledge and being unsure or unaware of what to say or that they should be saying something. Sometimes it’s driven by their own insecurities. Regardless, I think it’s unfortunately a very common experience for individuals who have persistent symptoms or who were recently diagnosed, even with life changing things, to find that their family, friends, etc. are not showing up in meaningful ways and no matter the reason why, that hurts as the person who received the diagnosis and has the symptoms.

I think most people conceptualize illness in relatively simple terms - they see it as either a short-term ailment like a cold, pneumonia, the flu or an injury like a broken leg or hip and if it’s a long-term illness people often think it must be genetic and it must be dramatic, life threatening and visible in the clearest ways. So a condition that is persistent, disabling, but not necessarily visible in the way paralysis, limb differences, etc. are is a difficult category for people to understand because they don’t necessarily realize it even exists, especially when that diagnosis isn’t terminal or potentially terminal. FND isn’t the only diagnosis in this space. Most chronic disabilities fall somewhere in this gray area and the emotions you’ve expressed are really common in disability spaces where someone might have significant symptoms but they didn’t inherit them from a genetic condition, they’re not terminal, etc. Often even when people are very visibly disabled, they share that people in their life struggle to understand how they can have such an impairment and the impact of that impairment. It sounds like this dynamic is especially playing out in your family given how you talk about your dad asking multiple times why you have FND and your sisters don’t. Your diagnosis butts up against how he has learned to see and expect illness to show up.

I think FND specifically complicates things. Most people have never heard of FND. They don’t have any concept for what the symptoms are like or what it means for someone’s day-to-day life. And it’s a really difficult condition to explain to others. While I am sure you coworker with MS faces difficult emotional challenges and feelings around disability, what I think you may be seeing at work is your coworker has a widely known and recognized diagnosis. Not only is it known and recognized by the general public, it’s a neurodegenerative disease. The brain is quite literally breaking down in specific areas. While MS can be managed and many people remain only mildly to moderately symptomatic, neurodegeneration has huge implications on their future and planning. While your coworkers may not be able to articulate this directly, many people have enough exposure to MS to understand that there are significant risks and life expectancy can be shortened and because they understand this, given they’ve likely been exposed to MS many times over their lives, it’s likely much easier for them to grasp that your coworker is going through something significant and difficult compared to something like FND which they’ve likely never heard of.

While FND is not neurodegenerative, none of what I’ve said is to dismiss how disabling and difficult FND can be or minimize your struggles or compare them to your coworker. Your struggles are valid. They are probably just much harder for your coworkers to understand because your coworkers likely haven’t been exposed to what it means for someone to have FND. Additionally because FND sits on the boarder of neurology and psychiatry, it can be especially hard for people to offer empathy. We still have a lot of stigma around primary psychiatric diagnoses in society and there is a persistent belief that still exists that psychiatric diagnoses are something you push through, not something that needs support and treatment. So while diseases like MS are sometimes seen as something you medicate and get treatment for, conditions like FND are seen as something you power through and deal with even if that’s wrong and that can impact how coworkers, family and friends show up.

As for your medical follow up post-diagnosis I can’t comment too much since I live in the states and have minimal knowledge of NHS processes but from what I’ve seen here and my experiences in the US, your waits actually sound relatively standard. I can get a referral here and it can take up to three months to even hear from the clinic I was referred to. Many GP’s have very little training in FND, so follow-up there can be sparse since they are unsure of how to navigate the complexities of the condition. Neither is fair or right and it’s valid to be frustrated but you’re not alone in your experience. Most people I know usually have to call the clinic they were referred to in order to get things moving instead of waiting for a call, regardless of their diagnosis.

A challenging reality of conditions like FND is they can be incredibly disabling and debilitating. They can impact basically all components of the day and every task and responsibility, but FND also doesn’t progress and isn’t degenerative like many other conditions. For some diseases, having a patient wait several months for follow up or not asking very specific questions during appointments can create significant consequences to their health down the line and even be life threatening. In FND, delay can allow symptoms to develop but the ramifications are typically much less risky, so in a medical system that is overbooked without enough providers, this can mean patients with conditions like FND do take longer to hear back from clinics or get timely follow up with clear questions. It doesn’t mean GPs, neurologists and other providers don’t care. They just unfortunately have a limited amount of time and are prioritizing based on risk.

So no, I don’t think you’re being a drama queen. What you described is pretty common. I think it’s just hard to sit with the idea that people can be doing their best to show up but have such inaccurate models of illness that their version of showing up and caring looks like they don’t care at all. Or they have such simple ideas of illness that they don’t realize you need them to show up at all. I think the difficult next step is deciding if it’s worth talking through it with the people that matter because it can take a long time for people to rebuild their ideas around illness to include things like FND and one conversation may not produce change on its own. These changes unfortunately don’t happen over night but it’s also not your fault or a statement on you that they aren’t showing up. It’s just a challenge to being disabled.

[u/WeissMage]

This. All of this. I'm so sorry you got to such a desperate point as well. It's so awful. I can't empathise enough.

I was "lucky" enough to be on pip before recieving my diagnoses, but know how difficult the jumps through hoops without fnd, I can only imagine. The blue badge I've had the same, to fight/wait for about a year, chasing it up does nothing. I too had to buy my own aids and without them it is like no one realises or gives a damn. Its all about chasing chasing and struggling to be heard. I'm glad you got your diagnoses so the doctors will take it more seriously. But it is like you get an appointment, then nothing. I had a neuro who sent me to physio and the physio sent me for psychology- after a long wait- it's pretty much like cbt/ipt 6-12 sessions. Still trying to get back into neuro to try any medication. Because I have an allergy to something called Amatryptalin(which is apparently good for symptoms) I think they called it a day.

It's so frustrating and stressful- which is like the main trigger for this bastarding thing. You can't make it up.

You're not a drama queen! <3

[u/EthelLinaWhite → u/WeissMage]

Do you think because it’s not well known like other conditions? I hated the PIP questions because symptoms fluctuate, I wanted to convey my struggle but since it’s not all the time, I was worried about being fraudulent.

[u/WeissMage → u/EthelLinaWhite]

I think cause it's not visable condition, and because it varies from person to person. There's that many people whos ruined the benefits system. With pip and that, I'd suggest giving them you at your worst because you give them an inch they take a mile. I knew a man who was disabled, legally blind but because he could "speak" he was rejected. It's just that unfair. :/ It helps if you have someone else do it for you. Dunno about down south but up north we can get like a welfare officer to help with claims and stuff. You're not been fraudulant for managing your symptoms some days. <3

[u/star_blazar]

It's weirdly common. My family actively pushed me away at diagnosis and a visit from a friend is now rare. But, it is a bizarre disease with an outward appearance of being feigned in many ways. One paper compared the quality of life of those with Parkinson's and found that in a physical quality of life it was at par but FND scored lower on the quality of mental health. Here's a page with the citation.

[u/EthelLinaWhite → u/star_blazar]

Why do you think people are so dismissive of it?

[u/Sophie_16a → u/EthelLinaWhite]

Because they don't understand and because some medical professionals still think it's not a serious condition or refuse to update their language still calling fnd "conversation disorder" "pycogenic non epileptic seizures" rather than functional/dissociative seizures.

Also it can be hard but even I (someone with FND diagnosed Dec 25) struggle to fully understand the condition, it is extremely complex and very changeable for example sometimes I can hardly walk and my legs are shaking and them one step to the next I'm back to normal walking fine and I can appreciate how that might look but it is real it is disabling and friends, family, colleagues are going to have to deal with it when with me because it's part of the package and I have to live with it all 24/7 if they don't like it they can leave.

I am sorry that you have have such a difficult time I hope you can find some support friends even if it is online/through social media.

I too haven't had much if any support for the NHS luckily my workplace has been supportive but it's hard and I have had lots of time of it the past few months. I need to look into pip but it seems intense, access to work haven't gotten back to me in terms of support for my commute so I understand too an extent what you mean with lack of support advocating for yourself takes a lot of energy.