Wednesday 25 April 2018

OPENM;NDED Mental Health Event

This is bigger than us, than you, than this organisation or that service. Let’s park our petty differences, our proprietary selfishness, and be OPENM;NDED. — Alisdair Cameron, Recovery College Collective

On Wednesday April 18 I had the pleasure of attending the OPENM;NDED mental health event at The Hancock pub in Newcastle.

An evening of meaningful and local music, poetry and performance centred around shared experiences and common stories of mental ill-health.

By creatively exploring the topic through music and poetry, we can begin to open up the conversation on mental health, de-stigmatise the topic and encourage recovery and resilience for those experiencing trauma and distress in our community.

The event was organised by OPENM;NDED in support of ReCoCo (Recovery College Collective). OPENM;NDED is a group of cross-disciplinary cultural managers, practitioners and researchers brought together through study at Northumbria University. ReCoCo is a joint venture between various organisations in the north east, “by and for service users and carers. ... a place where service users are able to make connections and develop their knowledge and skills in relation to recovery.” ReCoCo runs a wide range of courses and services. You can download their current prospectus.

So what’s the semicolon all about? OPENM;NDED’s Facebook page includes the statement: “By being open minded, we can make it a semi-colon and not a full stop.” The reference is to Project Semicolon, an American mental health nonprofit organization founded in 2013 by Amy Bleuel and dedicated to the prevention of suicide.

“A semicolon is used when an author could’ve chosen to end their sentence, but chose not to. The author is you and the sentence is your life.”

The semicolon has become a potent emblem for suicide awareness. Everyone who attended the event had their hand stamped with a semicolon. I wore mine with pride for several days until it eventually faded. (Yes, I did wash!)

I hadn’t visited the Hancock in many years. I remembered the place as quiet but that was a lunchtime maybe twenty years ago. Suffice to say, it was busier at 6 p.m! The outdoor seating area and bar were packed but the venue upstairs was much quieter and cooler. I arrived early which gave me plenty of opportunity to choose a good seat and learn more about the event.

I chatted with Laura and a couple of the other organisers while the performers were doing their sound checks. Everyone I spoke to was passionate about the work they are doing and their collaboration with ReCoCo.

I met up with several people I knew including Alisdair Cameron, Steve O'Driscoll, and my dear friend Carol Robinson who I first met several years ago via the Mentally Sound radio show. I had brought a couple of copies of High Tide, Low Tide and was happy to sign one for Carol. This led to a great conversation with one of the attendees (Hi, Martyn!) about how Fran and I met, about mental health awareness in general, and about our respective experiences of ASIST (Applied Suicide Intervention Skills Training).

The evening opened with a great piece of rap poetry by Dylan Holkar. Singer Lisa Bonetti introduced her set with a moving description of how important relationships and music have been for her.

Lee Symons was up next. I especially loved his cover of The Killers’ “Mr. Brightside.” After the interval Alisdair and Angela took the mic and spoke passionately about the work of ReCoCo.

The final act I saw was BEING. Their website describes them as “two best friends from the UK who create ambient and atmospheric songs and sounds.” Having heard them I can only agree. A very powerful and moving set.

After the event I contacted BEING to say how much I had enjoyed their set. They were happy to answer a few questions about their involvement in the evening.

What motivated you to be involved?
Mental health is such a relevant dialogue at the moment, and so it should be. We both have family and friends who are affected in different ways, and it plays a massive part in everyone’s day to day life, so we jumped at the chance to be part of something that is shining the spotlight even more on how we look after ourselves.

What did you get from the event?
We got further assurance that there’s loads and loads of people out there who are hungry to talk about mental health, and it’s a conversation that needs to be had over and over. It’s fantastic that Newcastle has so many people who are compassionate and committed to putting together these kind of events.

What does OPENM;NDED mean to you?
It means so much, from the openness of conversation and sharing, to the practicality of how we deal with our issues on an individual basis and as a society of people.

i had to leave at that point and missed the performances by Joshua Eckert and Annie Griffiths, but you can catch all the sets on the OPEN;MINDED Facebook page.

But enough about me! What did everyone else think of it? I asked some of those who attended for their thoughts on the evening.

Last night was the first event that we’ve organised under the OPENM;NDED umbrella, and I think the general consensus amongst the team is that it was a success! We raised nearly £300 for a local charity and brought together people from various different backgrounds and parts of the community. Everyone in the room shared an experience that, we hope, moved people to reflect and introspect on the social issue of mental health awareness and stigmatisation, and could form part of a complex system of a motivations that leads individuals to seek help, talk about their problems, share their burden, and feel they’re not alone. And, beyond that, we hope people had a good time, and we hope to do more!
— Jack, for OPENM;NDED
It was wonderfully heartening to see the passion, commitment and talent of students and younger people, all put to the cause of encouraging discussion and talking about mental health. We are grateful and humbled that they picked ReCoCo as their charity of choice and had a wonderful evening, and we hope to develop things further with such a lovely group of talented people.
— Alisdair, for ReCoCo
In regards to the evening it was just lovely to showcase talented artists for a meaningful cause. Releasing the stigma around mental health, and allowing people to express themselves musically and artistically, OPENM;NDED was an event with a heart and a cause that is close to everyone involved. Hopefully this is something we can carry on working on well into the future.
— Laura
It was very inspiring and thoughtful that the students felt supporting the work done at RE-COCO was worthy of their time and efforts. As a service user and volunteer at the Recovery College via Launchpad I know it is a lively communal space that is bound by the ethics of community, well-being and trust. The volunteers give 100% of their time and resources to help others. We have our ups and downs, but more ups than downs. It’s a happy and welcoming space. I can only say a big thank you to all who laid on the event last night. Thank you to Alisdair and Angela who spoke, and work so tirelessly behind the scenes. A big thank you to you, Marty, you support so many events relating to mental health. And thanks to Steven for inviting me to this really cool event.
— Carol
The event with wonderful live music was just what was needed after a day at work and all the Northumbria university involved in organising the event obviously had a passion for making a difference for local people suffering with poor mental health. The proceeds were donated to enrich the lives for people who use ReCoCo to improve their mental health and form new friendships. I also think the event proves to me that Students who use our Universities do have empathy towards local people. The students I have to say did a sterling job of raising the profile of issues around mental health.
— Steve
The cause is something that is very dear to my heart and I was happy enough to just be there, but to also be able to be involved and play music was an honour. I had an amazing time at openm;nded, the audience was awesome as were the rest of the acts.
— Lee
I thought the event really connected musicians with mental health. It was quite an emotional introduction to being openminded and speaking about our problems (all of us). I was really pleased to see Recoco there and learning about what they do.
— Martyn

As Jack mentioned, this was the first such event that OPENM;NDED have put on. I sincerely hope it won’t be the last!

If you would like to know more about OPENM;NDED you can follow them on Facebook, Twitter, and Instagram. Find ReCoCo (Recovery College Collective) on their website and on Twitter.


Saturday 21 April 2018

Schrödinger’s Fishing Tackle Box

Walking into work this morning I found myself thinking about my mother’s house which was cleared and sold last year. A few weeks ago I came across the property listing online, together with photographs of the house cleared for sale. Every room empty including what used to be my bedroom. The first space in the world I could call my own. Walls stripped of wallpaper and painted an aseptic white. Floors clear and sanded. No trace of the home I knew. The décor and furnishings now live only in my memory and a few photos of mine from past visits.

I’d suspected for some time that it wouldn’t be long until the house was sold, if it were not already, to cover the cost of my mother’s final years in nursing care. I could have asked someone about it but was content to explore the uncertainty. Looking back on it this morning I smiled to myself, recognising it as a Schrödinger experience.

Unless or until I asked the house, my home from birth until the age of eighteen when I left for university, was simultaneously sold—and not. Curiosity may have killed the cat but Erwin Schrödinger’s feline remains alive and not-alive until someone looks inside the box and the entangled, quantum superposition states of live cat / dead cat collapse.

At my mother’s funeral I was told—without my having asked and without anyone asking if I wanted to know—that the house had, indeed, been sold. But it was finding the photos online that collapsed the states for me. I looked inside the box. And found that the cat, or rather the home I had known for so long, was not dead. It simply was—not. It no longer existed. Like my mother. Like my father, years before. Not.

And my mind turned to the things the house once contained. The furniture, books, LP records, clothes. Had any of these now not-things been mine? It seemed plausible, although if there were still items of mine in that house decades after my leaving home, how important to me could they have been? I mentally ticked off a list of things I knew I had rescued and brought up north over the years.

  • A wooden tractor and trailer my father made for me one Christmas.
  • A wooden fort with drawbridge and moat, also my father’s work.
  • My collection of Action Man figures, uniforms, and equipment, including clothes my mother sewed and knitted by hand.

Another list, of things I was pretty sure I had never rescued and which were likely now not. Childhood board games. The six foot wingspan balsa wood glider I spend one summer building, filling my bedroom with balsa shavings, dust, and the rich aroma of cellulose dope. My scarcely used fishing rods.

And then I saw it in my mind’s eye, in all its classic red painted glory. The wooden fishing tackle box my father made for me: another Christmas present, or possibly a birthday. I would have been in my teens, maybe thirteen or fourteen.

I was never very into the fishing itself. I can’t remember ever catching anything despite visits to the canal with my cousin and to various park lakes with friends. But for a time I loved the craft and lore of it. I pored over angling magazines, crafted floats and lures from balsa wood, feathers, bits cut from tin cans—whatever I could lay my hands on.

I can see my tackle box now, clear as anything. The handle on the lid. The brass fastenings. I slide them open and lift the lid. Inside are all the floats, hooks, lines, lures and other paraphernalia. The scent of aniseed ground bait. And I wonder where that box is now. I’m not sure to which list it belongs. I may have brought it north at some point, in which case it is probably up in the loft. Or not.

It exists / notexists. Like so much else. And I find I am okay with that. With the unknowningness.

Old Schrödinger was really on to something.



Wednesday 18 April 2018

The Real Meaning of Friendship

By Charlotte Underwood

I guess I just try to be that friend that I really needed when I was younger and alone.

In a previous article I mentioned that “I guess I just try to be that friend that I really needed when I was younger and alone.” It was something that came to light as I was writing, a sudden hit of realization as to why I am so empathic. Though it is quite a sad truth, it binds well with my ability to turn even the worst negatives into positives. Today I want to expand on this thought.

As I grew up I found it increasingly difficult to make and maintain relationships of any sorts. I did have friends, although they were people I had grown up with and had become accustomed to my behaviours – I wouldn’t say they were close friends but we had known each other for life and that counts for something.

At the age of seven I moved to a town about three hours away from my hometown and I knew that I would have to start a new life. I would never see my friends again and would have to find new ones or just find comfort in being alone. Despite my introverted nature, I enjoy company and talking. To be honest I could talk for hours without stopping. I do enjoy having time to myself but if I am alone for too long it has detrimental effects on my mental health.

I never understood social cues or etiquette which certainly came to light when I attempted to find a new friend. It seemed that I repelled potential friends as I would be avoided or left after that first introductory conversation. I never knew why this happens, but even now it seems that something I do pushes people away. I am a kind person and only mean well, I give my all to the people I care about and I am a loyal friend. So why is it so hard to make others see that?

The problem with my childhood friendships was that I always found myself being the third wheel or tag-along. I found myself ignored and pushed out of relationships or used as a second option of company. I never felt valued or wanted. What hurt the most, and still does, is that when I would find people who later became my best friends, they would always leave. In fact, pretty much every friendship I have had has ended due to me being cut out.

I do not know what it is like to have a lifelong friend that stands by your side. I do not know what it is like to be able to reflect as an adult with your friend as to how you met all those years ago. I envy the people who have real friends, by which I mean a person who is always there for you, who starts conversations and makes plans to meet you. I don’t have that.

All I ever wanted was a companion to share this life with, not in a romantic sense but the kind of friend who you would still have when you grew old, who would be your maid of honour and be an auntie to your children. The kind of friend you could still be close with at old age and know that you have a unique bond.

I remember how planning my wedding hurt me. I did not want a reception but I was forced into it by other family members. I found myself with a tiny guest list and found it impossible to plan my half of the wedding party. It hurt not to be able to have close friends to spend the day with. When I think about the future, it hurts to know that I do not have friends who will be by my side when I have my first child or when I find my own success in my writing.

My husband is everything I could ever want in a friend, he respects me and supports my dreams. He does not judge me or my past and only ever lifts me up. He makes me laugh and we go on adventures together. He is my best friend, but although this is the absolute dream in a relationship I find myself still lonely as I must rely on my husband for all social desires.

I want to be able to unload onto someone else or to have other experiences. My husband is perfect but it is just not the same as having an unromantic best friend, someone I can have coffee dates with and go on holidays with. It does my mental health a lot of damage to feel this alone. It may sound horrible but having only one friend, a husband is not enough for me.

We all need someone who will always be in your corner, who has no intentions other than to be by your side and always lift you up. In a way we desire that second love, that soul mate who is not meant to be your husband or wife but rather be your right-hand man or woman.

I do, as an adult make it hard for myself to maintain friendships. I have severe trust issues and high standards of the people who I call friends. The truth is that I have been so hurt and taken for granted by people who I thought respected me that I believe that everyone will leave me and use me.

Friendship is a two-way street and I feel that some people forget that. You need to put the same effort into any relationship that the other party does. Even if you have no ill intentions, if you are never the one to call, to send that text or to plan a meeting, if you put none of the work in and expect the other party to do that for you – it causes a lot of damage and it’s toxic to mental health.

When you really care about someone you will find time for them. Even if you only send a message to check they are ok or give them a five-minute call that shows you value them. The little things count for a lot. You don’t need to sacrifice anything for the people you love but you do need to remember that your friends will not be around forever.

This is something heavily important to think about in this modern age where everyone prioritises work. When did money become more important than real human connections with those you love?

So, these are the things to remember:

  • Be honest with your friends. Do not lie to them because lies will always hurt more than the truth.
  • Take a moment out of your busy week and just check on your friend’s wellbeing. Show them you care and that you value their being.
  • Be equals in any relationship and don’t take a person for granted. Give them back what they give you.
  • Learn to communicate. If your friend upsets you consider if it is worth losing them over something that can be talked through and worked on.

No one deserves to feel alone in this world and no one deserves to feel like they are undesirable. If we all share a little love then the world will be a better place.

About the Author

Charlotte Underwood is a 22 year old from Norfolk, UK. She is a growing mental health advocate and writer who aims to inform and education on mental health. The goal is to be a friend to those in need. She believes no one should feel alone. Charlotte blogs at You can also find her on Twitter and on Facebook.


Tuesday 10 April 2018

#LetsTalkFND An Explanation of Functional Neurological Disorder for FND Awareness Day

By Alison Hayes

International Functional Neurological Disorder Awareness Day this year is Friday April 13, 2018. You can find more information about this condition on the FND Hope website.

My first symptom was a shiver. I shook, as if cold, in the warmth of my boyfriend’s arms. When he noticed, and held me closer to try to comfort me, I shivered more, shook worse. My whole body shook.

After we broke up, after the repeated suggestions that we get back together, and after his appearing where I didn’t expect him, and him not being in the places I expected him to be, things got worse. One night, in a friend’s room, trying not to think about him, my whole body moved with a sudden flash of motion. Every limb stretched out in the same moment, an abrupt stiffening. Then as suddenly as it happened, it stopped, and my body relaxed a little. What was that? My friend and I looked at one another. I was even more confused than she was. But she was more frightened.

After it happened a few more times and I found myself rocking back and forth for minutes at a time, I went to the ER and was referred to a neurologist. After some discussion, she told me it was all anxiety, gave me some anti-anxiety meds, and told me I’d be fine. I was, for months. I had another round of shivers and shakes five or six months later during midterms.

After I graduated, I traveled a bit. I had an amazing time in Australia, and lived there for eight months or so. I had no shivers or tremors and assumed that whatever it was had passed. When I stayed with friends in the UK for a month on my way home, I started doing a little bit of knuckling down, and looked into a couple of options for graduate school and found an interesting job or two to apply for. Immediately following one of my grad school interviews, I started having those full-bodied shaking episodes again. I was annoyed that they came back, but I wasn’t frightened. I reassured my friends that I would see a doctor after I got home.

Grad school didn’t pan out, but I found a job as a fishery observer on the Gulf of Mexico. I went down for training and started the job. It was pretty awesome! I was living on a shrimp boat for weeks at a time, out to sea with the fish, shrimp, seagulls, and oil rigs. I loved it.

In early December, a friend and I committed to an apartment rental, and I planned to enjoy my time there in between trips to Galveston, Texas and Bon Secour, Alabama. When I got back from my trip in December, I was informed that the program had lost funding, and there would be no more trips. Probably. They were trying to find a way to get a bit more funding, maybe they could work something out. I was to hang in there and they’d call me when they knew something.

Five months later, I started shaking uncontrollably, like an exaggerated shiver. I couldn’t stop shaking. It started on a Friday night. On Monday, when it hadn’t let up, I called a neurologist I had seen previously. The next day I was in the hospital. Three weeks later, I was seeing a movement disorder specialist in NYC, and he diagnosed me with conversion disorder. Since then, the name of the condition has been changed to Functional Neurological Disorder, or FND.

What Is FND?

FND is a neurological condition where emotional stress ends up being expressed physically by the body. We all have this to some extent (examples include sweaty palms or ‘butterflies in the stomach’), but with FND it’s extremely exaggerated with symptoms including urinary incontinence, limb paralysis, pain with no discernible cause, non-epileptic seizures, aphasia (inability to speak), irregular temperature response (putting on a sweater in a warm room, or being sweaty in a tee shirt on a cold winter’s day), and/or cognitive fog. The symptoms are not consistent (most people have slightly different sets of symptoms), and can shift unexpectedly in each person, often but not always in response to changes in stress. More details can be found on FND Hope is a nonprofit designed to empower people with the FND diagnosis, and be a resource for patients, caregivers, and medical professionals to help improve knowledge of FND and find appropriate treatments.

FND was known as conversion disorder when I was first diagnosed, which is generally labeled as a mental health condition, and usually occurs in conjunction with other mental illnesses. When you go back in the history of this condition, you find yourself hearing reference to Freud and hysteria. The term conversion disorder was used by Freud to describe how the condition ‘converts’ emotion into physical symptoms. Further back, a neurologist also referred to a condition he had discovered as ‘conversion disorder’ because the symptoms would ‘convert’ from one physical symptom to another after each symptom was treated.

The reality is that FND is right on the boundary between a mental health condition and a neurological one. The precise definition, cause, and treatment are still debated among professionals.

Evidence suggests that FND is associated with damage to the part of the brain that recognizes conscious decision-making, and that the symptoms occur due to some form of ‘misfire’ that changes emotional responses to physical reactions. For some people with conversion disorder they are strangely disconnected from their emotions, and only have the physical response to indicate emotional upset.

Some people use the terms FND and conversion disorder interchangeably, while some argue that FND is the umbrella term, and conversion disorder is a specific type of FND. In my case the psychological definition (conversion disorder) is a very good fit to my neurological symptoms. Many of my doctors still refer to my condition as conversion disorder, and my symptoms as conversion symptoms.


In my case, as I mentioned above, my visible symptoms are primarily movements—this type of movement is called myoclonus, or myoclonic jerks. Many people have experienced myoclonic jerks in their lives. Do you know that moment in time when you’re lying in bed, and nearly asleep, when suddenly you feel like you’re falling? The movement to catch yourself, in that moment, is a myoclonic jerk. It’s abrupt, violent, and startling. That type of movement defined my life for years.

While dealing with these unexpected movements, I also was dealing with severe urinary urgency and loss of bladder control. If I sat down to watch a movie with a friend, I would need to pause for a bathroom break at least twice in the span of the movie. Despite all these rushes to the bathroom, I would find that I had wet myself every few times I went. I have since learned that urinary issues are one of the most common side effects of FND.

Another really strange thing with FND is that in some cases (including mine), the patient is the person least concerned over the symptoms. The symptoms are an annoyance, or a bother, but not appropriately concerning. Many patients, including me, go to the doctor at the insistence of loved ones, because they (the loved ones) are freaked out and worried about it. This emotional detachment is sometimes referred to as ‘la belle indifference’ and appears to be due to the subconscious knowledge that these symptoms are the body expressing emotions, not a sign of a life-threatening condition. This happens in roughly one third of cases.

FND symptoms often only occur on occasion, with periods of seeming fine in between. There are also cases where the symptoms occur constantly in one particular part of the body, such as paralysis of a limb. In many cases, it’s a combination of effects. For example, I would occasionally have movement symptoms (most often when under stress) but consistently had bladder control issues.

Causes of FND

The precise reason why people get FND is not known. It is not a genetic condition like cystic fibrosis in the sense of having particular genes cause the problem, but there likely is a genetic component. There is a tendency within families to be more or less likely to develop FND, similar to depression and substance abuse issues.

What is known is that a large percentage of FND cases appear to have trauma in some form as part of the cause. In some cases, it’s an emotional trauma (toxic relationship, unexpected death of a loved one, etc), but in others it’s a physical trauma (sudden and severe illness, serious injury in an accident, etc). There is a smaller percentage of people who have symptoms come on without any discernable cause.

It does appear that a large percentage of people with an FND diagnosis had trauma, and in many cases were later triggered by a reminder of the trauma, and then developed conversion symptoms. Doing the research is very challenging, because most doctors who do work with FND have a small pool of FND patients to observe (basically just their patients) and there is always a fair number of people whose doctors have given their condition the label of FND when they might actually have a different condition.

FND Hope is looking for people with the FND diagnosis to share their details on their patient registry. The registry is designed to protect patient privacy and will only be accessible to researchers who are studying FND. If you have FND, or know someone who does, please tell them about the registry and ask them to participate!


When I was diagnosed in 2003, the diagnosis of conversion disorder required two different doctors to identify the condition. The first, in my case, was a neurologist, who observed my symptoms and had tested enough to know that there was not a recognizable neurological cause for the condition. The second is a psychiatrist, who observes the patient to see if there is a relationship between symptoms and psychological stressors.

This puts a lot of people in an awkward position. To get the diagnosis, they needed experts in two different disciplines, and the two experts needed to communicate with one another simply to confirm the diagnosis. A lot of people went undiagnosed.

Just to make things more complicated the write-up of conversion disorder in the Diagnostic and Statistical Manual of Mental Disorders (DSM) focused on differentiating conversion disorder from malingering (pretending to be ill for secondary gain). So during the process of being diagnosed, many patients with FND had their honesty questioned, and many psychologists and psychiatrists today still ask their patients about secondary gains from their condition. A secondary gain is something that makes it psychologically worth the inconvenience of the symptoms. For example, a person addicted to pain meds could claim pain to have the secondary gain of getting their pain meds, or a person desperately in need of affection might fake being sick to get support from others.

Nowadays the only doctor required for an FND diagnosis is a neurologist. This puts the condition firmly in neurological territory and protects those diagnosed to some degree from the social stigma that all people with mental health conditions face.


There is no guaranteed treatment for FND. About one third of cases of FND resolve themselves within a year of diagnosis: the person spontaneously recovers and doesn’t report FND symptoms again. For the rest of us, a regimen of antidepressants and talk therapy is strongly recommended.

There is now also a treatment program at several hospitals in the US and the UK. This involves intensive programs for physical therapy, occupational therapy, and sometimes additional supports such as on-staff psychological supports, speech therapy, or other therapies as appropriate for symptoms.

These programs last between one and three weeks, and while there are some inpatient programs (generally built around a single work week), most are outpatient, and can last longer periods of time. The antidepressants and this specialized treatment program are the only things consistently proven to work.

When I was diagnosed, these programs were much rarer (if they existed at all) and so I did not learn of them or participate. I did learn about, and participate in, the MORE (motor reprogramming) program in Louisville, Kentucky in 2016, and it did greatly improve my symptoms. Initially, I took antidepressants, got psychological counseling, and saw various specialists to help me gain control over my symptoms. My symptoms have never completely gone away, and there is no reason to believe they will, but I have improved dramatically from each time my symptoms grew severe.

Recovery Process

Many patients, including me, have a large sense of relief when they finally receive a diagnosis. I remember my symptoms immediately went down a bit after I was told that I had conversion disorder, even though there wasn’t a promising treatment offered. Just being able to name it was a huge relief.

Seeing a psychologist was the next treatment recommended to me. Since trauma tends to be a trigger for many people, it makes sense to see a professional that can help identify and cope with the trauma. For me, each time we dug through my life story and identified another big stressor and developed coping strategies for it, I felt better and experienced a decrease or shift in symptoms within a few days of that new discovery.

As I improved, I sought out specialists in other fields who could help my recovery process. I went through bladder retraining, physical therapy, biofeedback, and other programs that gave me some degree of relief or increased control.

The strangest thing with FND is that the symptoms are not consistent. Many patients, myself included, find that over time we develop new and different symptoms! I have found that a lot of them align with increases in life stress, but in some cases I have not been able to identify a trigger for this change.

When I first had symptoms, they were either my entire body, or centered around the trunk of my body. Over time, I started having movements occur in individual limbs and occasionally smaller areas of the body. I spent years slamming forward but never hitting anything: I’d always stop right before the surface. Then one day, I slammed my head into a table, and from then on I could not trust that my body wouldn’t hit things.

I spent years joking about my application to the Ministry of Silly Walks (gotta love Monty Python!) as my legs did all kinds of things instead of walking me straight ahead. After my week in Louisville I had much more control over my movement symptoms but started to experience sensation-related symptoms. I know have a little section of my back that will feel like it’s asleep every once in a while.

I now have pain, numbness, or tingling occur without a discernable cause, usually in different parts of my body each time. My bladder control decreased dramatically, so I am back to seeing my pelvic floor physical therapy.

I also now have migraines on occasion, something I didn’t consider in the past. I am still very happy I participated in the MORE program though, as I can now climb stairs without a second thought (I had a couple years where I needed somebody with me whenever I used stairs), and can have days at a time with no visible symptoms!

These shifts are actually a positive sign, as they indicate that the initial physical habits the body developed now have more resistance, so they symptoms are trying to come out through the path of least resistance. However, these shifts after incredibly annoying as anything I had found to help me adapt to my symptoms needed to be completely rethought after a symptom shift, and a new and different coping mechanism for new and different symptoms must be created.


For a percentage of people who get this diagnosis, their symptoms do resolve themselves, and after a short period of time (generally weeks to months) they spontaneously lose their symptoms and go on with their lives, symptom free.

For another percentage, FND is simply a misdiagnosis on their journey to determining what their true condition is. With no testing to confirm the diagnosis, and few ways to prove some of the alternative diagnoses, it can be a difficult process.

I am in the group of people whose symptoms simply did not resolve. Having had this condition for over fourteen years, I am pretty much resigned that it will be something I live with the rest of my life. On the bright side, it is not a deadly condition, and it is not progressive (it is not guaranteed to get worse over time). My goal is to manage my life to have minimal stress, manage the stress I have as well as possible, and to continue to try to improve my quality of life! By doing these things, I might never work full time, but I can have a good and fulfilling life.


FND is an unusual condition that is often misdiagnosed or wrongly diagnosed. There are some experts out there, but even the symptoms of FND span several disciplines. Many people do not get diagnosed in mild cases, as they don’t worry about it, and in some cases that works out just fine. It can co-occur with many mental or physical health conditions, making it hard to pin down.

Many people with the FND diagnosis are at some point accused of faking it or making it up. Social Security Disability Insurance (SSDI) and most support programs have difficulty making determinations for an FND patient because at times we seem able-bodied, and at times we undeniably need help, and we often switch between those two extremes in a matter of minutes.

FND awareness day this year is Friday April 13, and I request that all of you do something to help people learn about FND. Please share this article, or explore the FND Hope website (, or simply make a post on social media recognizing the condition. You might help somebody finally find their diagnosis, or help others be a bit more understanding.

Thank you for your time and attention, and I hope you have a wonderful FND Awareness day on Friday!

About the Author

Alison Hayes was diagnosed with conversion disorder (now known as Functional Neurological Disorder) in 2003. She has always viewed herself as an explorer and a person on a mission to improve her life through learning and adventures. She has maintained that explorer’s mindset, and does her best to make her life journey the very best it can be. Her most recent project is the website Thriving While Disabled which contains posts about improving quality of life and state of mind through planning ahead and taking everything one step at a time.