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Once more, I am participating in A Chronic Voice’s monthly linkup.

words: Tiring, Educating, Receiving, Giving & Quieting

FND Awareness week begins on Sunday April 7, so I wanted to get things off to a good start. Reading over these words, I immediately thought about my experience with FND and as a disability rights advocate(as I have the energy), as well as my current life-projects – this blog and a web-app to engage and connect the greater disabled community. This post digs into these important aspects of my life!

Giving

I like to think that I am a naturally giving person.  I want to do things that give back to society, learn things that give pleasure to me and those I love, and give myself over to help and support my friends the best I can.

I have done research on giving, and have learned that the act of helping is an incredible tool for improving your own life.  Recognizing your inherent worth and having that value reflected through another person’s appreciation of your gift is one of the best ways to improve your self-esteem and sense of self-worth, as well as the deep-seated assurance that you CAN do the thing(whatever it is).

I realize that, like many people with disabilities, there are not many places where I can or am expected to give.  People may ask me for money for various programs or resources, but money is the main thing I do not have.

I can give my time, my energy, my love, my knowledge, but it feels like they are rarely requested.  So I give my efforts to those I love to help make their lives better.

I give my time, patience and knowledge to make sure that my life partner Al finds and sees the best possible doctors to help his healing – and I accompany him to each appointment to make sure we get the support and referrals he needs.

Two years ago, he experienced an acetebular fracture, and his diagnosis journey to explain the cause lasted over a year, and we should know for certain if everything was properly diagnosed when we test his bone mineral density this summer.

That’s what inspired me to create this blog.

woman in red dress holding small oranges
I like to give from what I have, and I want to share what I can with others!

I give my energy and patience to my friends as they struggle with their own life issues, actively listening, hearing their thoughts and concerns with empathy, giving hugs and making suggestions when requested(and just listening when that’s what they need).

I give thought to the decisions and actions that have led me to the positive aspects of my life, and attempt to share them with my readers.

I give hope to others who share my diagnosis but not my fortune in finding helpful medical professionals through my participation in FND Hope.

And I am creating a space where people with disabilities can give help to others, and request the help they need, connecting with one another on a 1:1 basis. This gives us more opportunities to develop new social connections, potentially make new friends, and to remind ourselves that we do, indeed, have that capability to help others.

I listen, I absorb, I learn, I love, I give.  I hope to keep giving and create more gifts for my friends and for my friends-as-yet-unknown.

Receiving

As a person with a disability, I am assumed to always be receiving help(and my capability to give is consistently questioned).

I recieve my SSDI benefits every month. Many people seem to define disability programs and other social welfare programs as unearned rewards.

I worked hard to get my benefits, and the process isn’t easy. I also applied because although I wanted to work and had worked previously, I no longer could due to my FND.

On the occasions I hear somebody denigrating people for being on SSDI, SSI, or other social welfare programs, I take pains to correct their misperceptions!

pile of presents in front of a house's door
I am grateful for the gifts that I have recieved in my life!

I also have enough passing privilege that people generally assume that I am able-bodied, and so if I fall into conversation with them and they seem to have a positive opinion of me, I share that I am on SSDI to illustrate that people within the disabled community who cannot work can still be driven and focused participants in society. I do not hide my identity, but when I am asymptomatic, I don’t appear to be disabled.

I always make sure to focus on maintaining my mental, emotional, and physical health the best I can by using my benefits. Yes, that translates into rent, meals, utilities, and other basics(and the occasional recreational or social expense), but I am intentional in my decision making, and do my best to make choices in my long term best interest(and I acknowledge that sometimes people have lives that are so hard that their choices appear counterproductive from the outside perspective).

I also feel very fortunate that I grew up in a loving and supportive family, and continue to receive inclusion, love, and support not only from my own family but also from my partner and his family.

I have been able to have a stable enough life that I have put down roots(my partner and I have lived in our apartment for close to four years now, and I have never been forced to relocate), received offers of friendship, and am usually able to respond in kind.

I recognize the life privileges that have put me on this path, and I am grateful for them. I know many others have not been this fortunate, and as I honor myself for the wise decisions I have made, I recognize that much of that is due to the opportunities that my life has given me – I have always done my best, but I recognize that I started in an advantageous position.

Educating

I was diagnosed with conversion disorder in 2003, and the name has since been adjusted to functional neurological disorder(FND).  

The name change also included a reclassification – conversion disorder is generally considered a mental health condition(that appears to be a neurological one), while FND is considered a neurological condition that often is associated with stress and trauma.

Functional Neurological Disorder is a neurological condition where the part of the brain that acknowledges control of actions appears to be damaged.

Recent studies also show that there is a difference in the size of a few portions of the brain of people with FND when compared to a healthy population. The precise cause isn’t yet known, but it is further evidence that reclassifying FND as a neurological condition was the correct thing to do.

person shaking their head, movement captured on film
This feels like a good visualization of some of my movement symptoms, like shaking my head!

I have, over the years, had a variety of symptoms, each of which brings along its own challenges.  My movements used to be focused around the trunk of my body, then over time shifted into different limbs, like my arms and legs.  

I encouraged this to happen – I can’t directly stop my symptoms, but at times I’ve been able to shift them. It’s difficult to describe, but the easiest analogy is that I could sometimes sense symptoms coming on, much the way you sometimes know that you’ll sneeze sometime soon.

Just like trying to hold off or adjust a sneeze, I would try to stop my symptoms. Once they started, I would try to shift the movements into my arms or legs, it had a slightly better rate of success than stopping a sneeze, but often felt similarly futile.  

Unfortunately, 8 or so years ago, my movements shifted out of my trunk in ways I did not intend – such as my neck jerking around so that I would slam my head backward.  

I have unintentionally slammed the back of my head into walls and caused myself severe dizziness and pain through that one – it’s one of my more debilitating symptoms when it hits.  

Fortunately, I’ve only needed to deal with it for a few months at a time, and it’s usually a pretty extreme expression, one I can avoid my minimizing my activity/stress when it does occur.

I also now have times where my head will nod or shake outside of my conscious control – that one’s made me severely dizzy.

I also have had the muscles in my eyes move independently of my control.  They have gone out of focus for hours to days at a time, giving me a pretty nasty headache, and I have had a few short periods(minutes at a time) where my eyes have darted around in my head, looking frantically everywhere, even though I’m not conscious of feeling anxious or trapped.  

I think the weirdest one was having muscles in my neck contract so that one small portion of my throat would feel like I was nearly being strangled. It was uncomfortable, with some similarity to wearing a turtleneck shirt that’s too tight – but only for a couple of inches of my neck!

Apparently, that bears some similarity to physical sensations around a panic attack. Again, when I had that symptom, I wasn’t feeling particularly anxious.

Since my condition is poorly understood and most doctors aren’t aware of it(it is actually very common, but rarely properly diagnosed), I end up putting a lot of energy into educating my doctors about my case of FND – and if they are interested and I have the spoons, explaining that symptoms vary hugely between patients.

Since practically every medical anything assumes that the patient can stay still, I need to discuss my symptoms with every doctor I see.  

person in an MRI machine
So many medical tests and treatments assume that a patient can hold still

For example, getting my teeth cleaned, I need to be able to take a ‘twitch break’(let my body shake spasmodically for a while to ‘get out’ the tension) once or twice during a cleaning so I can stay still the rest of the time.  

If I have any extra stresses or am upset while preparing for the appointment or waiting to see the doctor, I’ll likely limp into the office and may not be able to stay still for whatever needs to be done and am more reactive to whatever else happens.

When I am sick, my body is under more stress so my symptoms are also more severe than average.

Some doctors are very anxious or uncomfortable around me and I react to their anxiety by becoming more symptomatic – which usually increases their anxiety or discomfort – a pretty nasty spiral.

Due to this, seeing new doctors has an extra degree of stress and uncertainty involved, and if the doctor reacts poorly to my symptoms or I have a rough time coming in, they may not be able to do what’s needed at the appointment.

The other thing is that it’s still possible for me to have any other medical condition, so I need to do all of my regular testing, often made more complicated by my symptoms. I also need to make sure that each new symptom really is an FND symptom and not an early sign of some other condition.  

Many doctors will dismiss new symptoms by FND patients as another FND symptom(the symptoms shifting over time is another hallmark of the condition), which can have deadly consequences.

At the same time, focusing on an FND symptom often makes it worse, so it’s also very possible to stress yourself into a pretty severe reaction.

This is part of why I avoid the emergency room like the plague, and will only consider going in if there’s a very obvious physical issue(such as a broken limb) – if there isn’t, I wait it out and contact my neurologist as soon as possible.

A lot of FND patients have nightmare experiences at hospitals, but especially ERs since our symptoms often appear (and can feel) exceptionally dangerous, but if it’s an FND symptom it can’t really be deadly(other than the slim possibility of hitting your head during a fall or something similar).

As an example, a nurse at the Motor Reprogramming(MoRe) program(specifically for FND patients), told me about one patient who turned pale and spastic and wasn’t able to communicate.

The first time she saw that patient being symptomatic, she thought the patient was having a stroke or unable to breathe and called a code blue – everybody rushed in, and the patient had by then recovered and was able to assure everyone they were fine.

Many FND patients are accused at some point or another of faking it, having more control than they say, or being symptomatic for attention.

The mental health designation and the DSMIV’s mention of malingering(faking) as an alternative diagnosis added to patient stress without being useful or helpful to anybody. Now, those in the know realize that distractibility(inconsistent symptom expression) is a hallmark of FND.

What I mean by that, is that quite often, if I’m not thinking about what I’m doing, or intensely focused on something other than my symptoms, they may not occur, or they are likely to be milder.

Focusing on them can at times make them worse(especially if feelings of anxiety or panic come into play).

For example, I generally can walk from point A to point B without much of a problem(other than days where I’m super symptomatic), but until I participated in the MoRe program, I couldn’t generally go out for a walk in nature by myself.

If I had a friend with me and we chatted on the walk, I would be symptom-free(or close to it), since my focus was on my friend and our conversation.

Walking alone I would usually start rocking after a few steps(or limping, etc).

At first, even my own family thought I might be stretching it, as I generally could do the things I wanted to do, but ‘conveniently‘ household chores often would set off symptoms. Being doubted on top of everything else just made everything harder.

Tiring

I sometimes find the process of educating everyone about FND exhausting.  If I am feeling good, my symptoms are generally lower-impact than when I’m not, but any emotional trigger may increase my symptoms.  

In other words, the more likely it is that somebody will see my symptoms, the less energy I will have to cope with their response. Also, the better and more energetic I feel, the less likely I am to appear disabled. I often just stay home on bad days for this reason.

cat looking unhappy
Many of us are aware of the body language of those around us – with FND we are especially sensitive and reactive to those signals

People with FND are usually incredibly sensitive and reactive to the emotions other people are exhibiting(especially if it might be directed at us). I need to find a good doctors who will trust my judgment and accept my diagnosis, and still be willing to test new symptoms or help refer me to the right specialists who can help me know if it’s really a conversion symptom.  

A poor word choice or an issue with my insurance can lead to me moving so violently that they may not be able to test me or I may injure myself, so it’s vital that their staff is respectful of me. Over the years, my control has improved, but it’s still challenging.

I had my first mammogram recently, and on top of all of the usual life stresses surrounding that procedure and the usual concerns and discomfort, I had additional things to worry about.

The technician and I needed to make sure that I didn’t shake while she prepared me, was able to keep totally still for her to take the image and was able to handle the wait between steps without becoming more symptomatic. We had a nice conversation and the process went fine, but there are so many ways in which it could have gone wrong.

I called in advance and told them I had a movement disorder and so might need extra time, so they scheduled me during a less-busy time of day to help reduce my stress.

I need to call ahead about most everything, plan ahead, and anticipate as many potential pitfalls as possible.  It’s a lot to manage, a lot to think about, and a lot to do. It means most activities take extra mental effort, and then participating is likely to be more draining than average. It also means that once I reach a certain fatigue point or experience too many triggers, my symptoms will come out and fatigue me further, which will increase them more.

While for each person, it’s their first time to learn about my condition, I’m tired of explaining, and I’m tired of exposing myself, and I’m tired of the fact that the times when I most frequently need to explain myself is when I have the least energy to do so.

Quieting

The best treatment for my FND symptoms is quieting my life, both internally and externally.  I have a long history with anxiety, which of course, will increase my symptoms if it runs away with me.  

Unfortunately, our bodies do not entirely differentiate between stress and eustress(positive stress) so going out and having certain types of fun will also increase my symptoms.  

Having a drink can shorten my night, as alcohol reduces self-control and so increases my symptoms. I often am less concerned about their visibility though, so it is a risk I sometimes choose to take.

Seeing friends, especially in a louder setting(like a bar or music festival) is exciting, but also a lot of sensory input, and a lot of competition for my attention.  

I will be thrilled to be there but shaking and rocking from the excitement, which is tiring.

If my emotions are stronger than I can physically express in the moment, the ‘overflow’ becomes conversion symptoms.  

shrimp boat on a dock with other boats in the background
I lived on one of these for weeks at a time and loved it!

Whether its hurt that somebody was rude, anger at a perceived injustice, excitement over seeing a friend I’ve been missing, or ecstasy over an amazing experience, it’s all going to be expressed in the form of movements(and occasionally other symptoms).  

So, to live a life low on symptoms, I need to keep the emotions I’m feeling on a shorter spectrum – quieter satisfaction, happiness in a range I can handle, comfort and support around me, and managing my disappointments.

To minimize my symptoms, I would need to aim for the middle road emotionally and avoid the excesses.

That isn’t my personality!  

I backpacked alone around a foreign country.  

I’ve lived on fishing vessels as a career move.  

I snorkeled with whale sharks.

I keep experimenting with entrepreneurship.  

These are all things with extremely high highs and extremely low lows – excessive emotions that I can’t fully express and so will end up being expressed by symptoms.

So I balance, carefully.  I try to minimize my lows, and I plan my highs padded with recovery time.  

I share my concerns in advance, and I let people in charge know that I may be shaking or rocking or limping, but I really am fine and don’t need to be rescued.  

I do the awesome high energy things I do with people I love, who understand my condition and can support me when I come against those moments – and by their presence can ward off well-intentioned people who may try to ‘rescue’ me.

sunrise on a beach
There is a power involved in quiet, and the act of quieting can calm my symptoms

I select what to put my energy into with consideration and do what I can to increase my tolerance of novelty and improve my ability to process.  

I meditate, to be more at peace with myself – shaking and rocking most of my session, but doing my best to not strive for control, but simply accept that my movements are part of my meditation.  

I go for walks in nature as I can, listening to my body when it tells me that that’s too much for today, and I try to keep my living space organized so I have less day-to-day feelings of overwhelm.

I am working to balance my desire for a high energy life to my emotional need for quiet and balance.  It isn’t easy, but it is rewarding.

Putting it all together

I have Functional Neurological Disorder, and have had it for most of my adult life. I do not expect to ever ‘fully recover’.

What I try to do, and have succeeded at, is create a balance where I can be the best me that I can be. I give of my time and energy to the best of my ability, always doing my best to take care of myself first. I recognize how fortunate I am to receive the support that I do, and I celebrate those gifts.

I am a natural educator and have chosen to educate others no only on the condition I have, but also on the value of the disabled community as a whole and on the inequalities so many people face in day to day life.

While I at times find the process of sharing and educating tiring, I continue to do so, hoping that each step may leave the person I educated more aware or thoughtful, and that even if I don’t need to see that person again, the next person whose situation echoes mine will get treated that little bit better because of our interaction.

Finally, quieting my life has been an imperative forced unwillingly upon me and at odds with my identity.

I am learning to be more graceful about it, and have habituated myself to the needed concessions, such as planning ahead and building recovery time into my plans when necessary(most of the time).

I do my best to accept my limitations, push my boundaries when appropriate, and plan with my needs in mind.

blue space with white text reading: Who to see to help manage your FND?: download our guide  beside that is an image of Alison gesturing towards the question

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8 Comments

  1. Hi Alison, thanks for joining us again 🙂 The personality and needing to take the middle ground thing you mentioned really struck a chord with me. Ain’t that the sad truth. And well done on raising awareness on FND and doing what you do. Hope you’re having a good, low pain (or pain free) month!

  2. Thanks Sheryl! I think that’s one of the things so frustrating with FND and likely many chronic conditions – the treatment and management suggestions are completely at odds with our identities! Part of why I focus so much on integrating my life is for that reason….I don’t want to beat up on myself for not doing things due to fear of my symptoms but I need to find a path that my future self will also be good with. So I prioritize, then judge in the moment what I can do today with how my body is feeling. It’s a tough balance, but I can only change what I can in my life.

  3. It was so interesting to read about your FND….which I also have.
    When I tell people I have short term memory loss, they think I’m joking or that when I shake I’m nervous.
    I often avoid large events as I can’t follow the conversation. I scare myself when I have non epileptic seizures, usually when I’m sleeping (broke a molar and often bite the inside of my cheeks).
    Sometimes I talk as thought I’ve had one too many drinks and trying to let people know I’m not having a stroke when one side of my face droops and my speech is slurred , is a little difficult.
    There are so many varied symptoms and other medical personnel don’t understand.
    When I have a good day, I get carried away with doing things and then I crash for a few days….I’m always confident I can push through…doesn’t happen though.
    I can’t seem to find a support group in Western Australia.
    The UK seems to be invested in assisting people with this often debilitating condition.
    Thanks for sharing your story…I feel less alone on this FND journey.

    1. Thank you so much for sharing! FND is such a tricky condition, it’s really hard to create a good balance for yourself! You have quite a mix of symptoms and I can imagine how frustrating it must be! I feel really lucky that my thoughts and memories haven’t been affected, other than the very ocasional days where it feels like everything is running in super slow, including my information processing.
      I also don’t go to larger events often, and have had a few times conversations have been challenging to follow due to noise and other conversations. I get it!
      If your doctors aren’t able to be helpful, please look for ones that are at least more willing to learn! There is a treatment center in Brisbane, https://fndhope.org/treatment-mater-hospital/ but I know that that’s the other side of the country! I went to Louisville, KY for my treatment, which was almost a 12 hour drive away!
      Keep looking for better treatment options, and remember that you always have the right to find a doctor who can really help you!

      Wishing you the best!
      Alison

  4. This was such a great read, thanks, it seems like we share many of the same physical complications and its just nice for me to know that I’m not alone there. Often have a hard time talking about my symptoms because they are hard to describe and I worry people will think I’m nuts.

    I agree “quieting” is the best thing for me, and I’ve accepted that. I can’t take on too much. I can’t work several jobs like I used to. No more concerts or busy restaurants. And I’m okay with that. Learning to listen to what my body needs and enjoy the peace and quiet and find joy in other things!

    1. I’m so glad you found this post helpful! You definitely aren’t alone and explaining symptoms definitely can get complicated quickly.

      I’m glad you found your peace with FND. It’s a hard path, but finding joy in life is so very important.

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