two women with arms around one another's shoulders sharing a blanket

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

words: Adjusting, Hoping, Surviving, Befriending & Awakening

Putting these words together, the idea of recognizing my limitations and how my condition works jumps out at me. This is a very internalized process, but a vital one for developing a good self-care routine, and indeed being able to enjoy life while managing a disabling or chronic condition.

Surviving the surreal

The first step, to me, is surviving. Right after something happens or goes wrong, the first step in that adjustment process is, quite simply, getting by while you absorb the information and what it really means.

In my case, my Functional Neurological Disorder(FND) symptoms were an on-and-off thing for years – as a child, I had unexplainable headaches, visual auras, and the occasional unexpected thing(like a single day of extreme emotional volatility after my father injured his hand and a headache that lasted a few years).

In each case, I got through the event, then mentioned it to my therapist, and it wasn’t pursued.

person treading water
Sometimes all you can do is tread water and keep from going under.

Around my junior year of college, I had new symptoms that were too strange and obvious to ignore – I started rocking and shaking and having these episodes where pretty much all my muscles would suddenly stretch in a jerky motion.

It was strange and abrupt and worried my friends(I didn’t feel particularly panicked, more annoyed). There was a lot of extra stress going on(I was attempting to exit an abusive relationship with a narcissistic person), and when I did eventually see a neurologist, she told me it was stress and gave me some medication.

I figured out how to make it through the rest of the year, and my symptoms did decrease slowly.

When my symptoms settled in permanently, it was a few years later. I had escaped the problematic relationship(by going off-campus most of my senior year), and had spent much of my first year post-graduation traveling(after a few months of working and saving up, I backpacked around Australia for 8 months).

I had no movement symptoms and had almost forgotten about it. I spent some time with friends in the UK on my way home from Australia and interviewed for a few jobs and graduate programs.

During that, I started having shaking episodes like I had back in college. Within a week or so, they were gone again, and I again wrote it off as nothing.

Five months later, I had another set of stresses(the job I had fallen in love with lost funding and had an extremely uncertain future – I found this out a couple of days after I had committed to a one-year lease on my first apartment ever), and started having those sudden movements and shaking episodes.

Then I realized I was going to the bathroom extremely often, leading eventually to a lot of urinary testing, catheterization, and other painful nightmares.

These weird, apparently unrelated, symptoms kept building up, keeping me from being up to fully committing to my job hunt, leaving me feeling uncertain, and seeking out medical support until finally in July of 2003, I finally found a neurologist who specialized in movement disorders and got my diagnosis – conversion disorder!

My focus during that time had been surviving my symptoms, looking for work(which I finally found in May- my focus then shifted to keeping the job), and trying to pretend that things were okay.

I left that job for medical reasons within weeks of my diagnosis, partially because I had already accepted a different position that paid more and was much closer to home.

I wanted to take some time to try to get a handle on what I had. I used the weeks I took off in between jobs to set up a care regimen and see if I could manage my symptoms. Mainly that was finding a therapist and otherwise resting in hopes that things got better.

Instead of getting a handle on it, I was asked to leave the new job just over a month after starting, as I couldn’t safely do the work.

Having sudden severe shaking episodes with minimal warning doesn’t mix very well with handling toxic chemicals and manipulating tiny samples.

To me, at that time, my movements and other symptoms were strange and disruptive events that were getting in the way of the important things in life(my career and spending time with my friends).

All those attempts to maintain a normal life despite my symptoms came to an abrupt and final end when I lost my second job in three months to this random movement disorder that ‘could go away at any time’.

Hoping it will go away

I spent a lot of that time between my first symptoms and that forced awakening to how disabled I was hoping that the problems would just go away.

I got into a great college that had a lot of students like me, where I was finally able to build friendships that would last(and I remain close friends with many of those folks even now). I had pretty much forgotten about the weird things that had happened, health-wise, while I was in middle school and high school.

a woods, with the word 'hope' lit up on the ground
Hope can be a wonderful thing. But when the hopes are dashed, it’s that much more painful

I escaped an unhealthy relationship in my junior year of college by going off-campus for much of my senior year.

I had a great semester in Woods Hole, MA, and an amazing term in London, then returned to campus to triumphantly complete my minor and write my honors thesis.

Time may not heal all wounds, but I had had some time to distance myself from him, and he had found a new victim, so my senior year was much lower in stress than my junior year!

After graduation, I had over a year with no symptoms whatsoever, and spent the time traveling, broadening my horizons, and having amazing experiences. I believed that I was cured.

After I got home, and found a new job, I hoped – no I believed – that my troubles were behind me and that everything was going to be fine.

When my movement symptoms came back, and when the bladder symptoms started – I hoped they weren’t really problems, and I kept hoping that they would just go away again like they had those other times.

You can only run away from yourself for so long before you realize that it’s futile.

Awakening to reality

Realizing that I had a serious health problem was hard. Recognizing how disabling it was was even harder.

Finding the right medical support to help me figure out what was happening and how to manage it was the hardest part of all.

I saw a lot of doctors.

I saw multiple urologists(it appeared to be a bladder problem after all).

I saw multiple neurologists(maybe that shaking was some form of seizure?)

I saw multiple psychiatrists(I knew I had a history of depression and anxiety, maybe that was somehow related??).

Eventually, I found the neurologist who could actually make sense of the whole thing.

It was all related. The depression, the anxiety, the shaking, the urgency. They were all part of this single condition: conversion disorder.

cat laying on its side, wide-eyed
Open your eyes and see what’s really happening. Only after that can you truly start to heal!

Conversion disorder usually occurs in patients with a history of mental health issues(I was diagnosed with depression when I was 9).

It looks neurological, requires a neurologist to diagnose it, but was considered a mental illness at the time of my diagnosis(and required confirmation by a psychiatrist).

In the years since my diagnosis, the condition has been renamed Functional Neurological Disorder(FND) and is considered a neurological condition.

It now only requires a neurologist for diagnosis(which helps the diagnosis process) and a large percentage of patients have trauma associated with their FND.

Yes, a large percentage of people with conversion disorder have some form of bladder dysfunction.

The good news was that my problem had a label.

The bad news was that there wasn’t a whole lot of progress made on treatment, and other than reassuring me that sometimes it just vanished(like it had for me in the past), there wasn’t much else they could have me do.

There was no magic pill, no useful shot, no PT regimen to ‘fix’ me.

All my neurologist could tell me was that there was no specific thing I couldn’t or shouldn’t do, as long as I didn’t feel it was dangerous for me – that my own best judgment was probably the best thing I could listen to.

Oh, and talking to a therapist may help.

Adjusting to my new identity

I put much of my energy the first year or so after accepting my diagnosis mentally, physically, and emotionally adjusting to having conversion disorder/FND.

I spent time grieving over losing my job and my sense of direction.

If I didn’t get physical control over my body back, my entire plan for a career(as a fishery biologist) was over before it began.

I had to accept that my subconcious was causing these symptoms – that some part of me felt that these symptoms were safer than the emotions that I would otherwise have connected with.

I had to learn when my symptoms were a response to an emotional trigger(like a statement that would normally lead to depression or self-harm), when they were a response fo a more physical or physiological trigger(like a cold draft or simply being tired), and when my symptoms were just my body responding to life stress in general.

I had to adjust my expectations for myself, and find my new normal.

My new normal included feeling like I needed to pee all the time.

My new normal included not being able to reliably walk normally(I would often joke that I was in the Ministry of Silly Walks).

My new normal meant that if I walked with an overly full bowl or mug, I was pretty much guaranteed to shake and spill it.

My new normal was that if I didn’t wholeheartedly want to do something, I would shake so badly that I couldn’t do it(who wholeheartedly wants to wash dishes or clean their apartment or file for disability??).

Over the next year, I had a lot of mental and emotional adjustments to make.

man looking into a shard of a mirror
Accepting a permanent or long-term condition is rough, and jagged, but you can learn to accept the ‘new you’

In July, I had to adjust to having a diagnosis that meant that I was subconsciously causing my symptoms.

In early September, I had to adjust to the fact that my supervisor and colleagues felt that I could not safely or reliably do my job – I was only two months into a 9-month contract!

By November, I was adjusting my mind to accepting that while I had these symptoms, I couldn’t work and that there was no real end in sight to my symptoms.

In late November, my father died.

I needed to adjust to that loss, and to the fact that my grieving process was much more physical than most people’s due to my conversion disorder.

With my father’s death worsening my symptoms and state of mind so severely, I had to adjust to the idea that applying for disability was probably the best thing to do.

I spent January through March working on my disability application, in between severe symptoms, grieving the loss of my father, and trying to rethink my career goals.

I could work on the forms for maybe 10 minutes at a time before I’d need to take a ‘twitch break'(letting my symptoms go crazy for a bit), and sometimes it would take me an hour or so to be able to get any work done after that.

In April, my boyfriend, who had been my primary emotional support through all of these stresses, decided that he was done with our relationship, leaving me devastated.

He and I had been close friends and romantically interested in one another for years, and had started officially dating the previous year.

At that point, most of our friends were mutual, it also left me in an awkward space with the few geographically convenient friends I had left.

I had to adjust. By July of 2004, as the dust started to settle, I was living an incredibly different life from what I had had just the year before.

I was part of a grief-stricken family, missing a key member.

Instead of living in a small apartment with a friend, I was preparing to move into a slightly larger winter rental(with no idea what the following summer would bring) with a different friend(who I was less close to) and her husband and child.

I went from being relatively secure(just having insurance coverage from my mother) and gainfully employed, to being entirely dependent on the federal government and my mother(who was able to keep me on her insurance until December of 2005, when I was absolutely aged out).

I went from having a career plan with maybe a slight diversion to hoping against all hope that I would maybe be doing enough better that in a few months I may be able to start applying for classes in my new chosen field.

Instead of being in a healthy and supportive dating relationship, I was single with no prospects.

It was one hell of a year. It was a lot of adjustments. But I made it.

Befriending my condition

Befriending your condition is hard, but necessary.

I’m not saying that your condition is your best friend, but that, like people who you know you will be interacting with on a regular basis for a long time, it’s much much better if you have an amicable relationship with good boundaries.

You need to know what you can and can’t do safely.

You need to understand what a ‘bad day’ and a ‘good day’ look and feel like for you.

And you need to understand and communicate well with your body, understand what you can and can’t do at any particular day and time, and be able to truly listen to your body and hear what it has to say.

That sounds a LOT like befriending your condition. That feels like befriending your condition.

You can’t wish it away.

You can’t make it go away.

Begging and freaking out also don’t work very well.

Often your condition is nonverbal, intuitive, and challenging to understand.

Your condition is not the mature, communicative adult that you want to believe you are.

dog looking at cat through glass door
It feels unnatural at first, trying to connect with your condition,

Like a toddler or a pet – your condition can’t fully articulate what is happening, why it’s happening, or the breadth of what it means.

As the intellectual and communicative partner, it’s your responsibility to learn its language, to understand its needs, and learn how to make friends with it, so that you can have a better life.

I can’t say that my FND and I are best friends.

I think that’s a lot to ask.

I don’t particularly want it to come out to play when I go out to see my friends, or when I want to focus in and work on things that are important to me(like this post that I’m currently writing).

But, the better I have gotten to understand my condition, the more productive I have been able to be.

The happier I have been able to be.

The more in-control I’m able to feel.

I know, now, that a bad symptom day happens sometimes.

There are some things I can do to minimize the frequency or severity(like practicing good sleep hygiene, maintaining self-care regimens, and going back to sleep if I need to, no matter how late or early it is).

I have learned that by truly listening to my body, hearing what my FND has to say, I can actively work with it.

I know, now, the difference between having a brief symptom flare due to a trigger, which I can generally recover from quickly and go on with my life, and the ‘I’m done’ signal from my body when I have reached my saturation or exhaustion point for the day.

Often my flares would be things like shaking or muscle clenching when I see and hear an ambulance, or sudden spasms from cold if I go swimming in a pool or the ocean.

With a flare, often I can just take a few minutes to recover or get away from the stress and go on with my day.

When I’m done, on the other hand, I won’t have much more control until I’ve gotten a good night’s sleep or another form of longer-term relaxation/recovery time.

I’ve learned when I’m able to push myself that extra bit, and when a little push now is likely to lead to another day or two of severe symptoms.

Do I know this perfectly? No, nobody and nothing is perfect, and there are always some variables that I can’t fully control or anticipate.

There are days when I give myself an okay amount of little extra push, then I find out somethig upsetting that I don’t have the reserves for.

Some days, my easy ride home turns into a nightmare due to weather or mechanical issues. Some days I get exposed to a virus that saps me more than I expected as my immune system fights it off.

I can’t always know for sure what’s going to happen. And I’m sure that my subconcious feels somewhat betrayed when those extra things happen or go wrong, or fall through.

Usually, they are out of my control, these things, and all I can do is accept that they happened and figure out what I can do next to try to put out that fire, or how I can adjust my plans now that this new wrinkle has occurred.

By befriending my condition – by trying to open up that dialog, as you do with the kid down the hall, or the cat in your yard, or your neighbor’s dog -I understand it better.

I communicate with it better.

I better understand its needs and desires, and limits. I feel less betrayed, more empathetic.

cat sitting on dog, both relaxed
If you and your condition must live together, isn’t it better if you get along?

The dog’s less likely to bite.

The cat might occasionally purr at me or leave me a gift or rub against me instead of just yowling at night.

The baby might smile when it sees me instead of cry.

I feel better.

It feels better.

I can do more, and it’s less limiting. We reach a point of understanding.

It isn’t perfect. Nothing is. But by trying to befriend my condition – by trying to empathize, understand, and communicate with it – I am a happier person, more at peace, less angry.

Instead of being a victim(the dog bit me, the cat yowls every night, the child cried at the sight of me), now I’m a partner(the dog knows I’m part of the pack, the cat rubs against me and purrs, the baby smiles at me, and I smile back).

I am in the same situation, but it’s better now, easier, more comfortable.

I know what’s happening, and why, and I’m apt to have more good days, more success, and more hope!

Let’s reach out, and befriend our conditions, make peace, be graceful about our limitations. Learn the lessons we need to learn.

And then, only then, can we live our best possible lives!

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8 Comments

  1. Hi Alison, thank you for joining us once again. It was great to hear your perspective on befriending our conditions, something which I’m trying to do constantly too! I am currently ‘normal people’ sick but as you know with chronic illness it seems to hit 5x harder. But I’ve been trying to tell my body ‘let’s get through this together, thank you for trying your best.’ And I think it helps (or maybe all in my head ;))

    Anyway thank you for joining us once again, and I hope we both find some peace along the way 🙂 x

    1. Sheryl, I’m with you! Including the ‘normal people sick’ part! I’m also working through the whole being sick thing, which is probably part of why your suggestions hit me the way they did!
      best wishes to you!

  2. Hello again Alison

    I love reading your posts, also living with FND I find I can relate to your posts so much and you really describe what it’s like to live with this condition with such eloquence. This is especially true regarding your thoughts on befriending your condition, something which is extremely difficult but often necessary in dealing with the negative consequences, both physically and mentally. Another brilliant post. Wishing you all the best. Rhiann x

    1. Kathy, mine does too, absolutely! After a while though, there are themes and patterns that we can recognize…starting to see what a ‘good’ day often looks like, or what a ‘bad day’ can change. We can recognize triggers and at least some of what shifts our expectations and what can help us feel better! I agree it’s a constant struggle, but it at least is something that we can learn more about and can devote our energies to better managing ourselves and our lives!

  3. oh my what a story, it’s so hard when it takes so long for your condition to be ‘named’ to know what is going on. Befriending you condition sounds like a good idea, I’m currently on very bad terms with mine and although I’ve been thinking a lot about acceptance I don’t know if it’s really there yet. Thanks for giving me some food for thought.

    1. Raisie, It is really frustrating not knowing what’s happening. Often a diagnosis is what helps you develop a real plan for managing your condition, and what can help you find a direction or goal to aim for. Befriending your condition is hard, especially at first, and it’s easy to hold onto the pain and frustration and much harder to be okay with what’s happening. However, it’s one of those things, fighting yourself isn’t helpful. Being angry at your body doesn’t make it work better. Pushing through the symptoms usually leaves you feeling worse, not better(there can be exceptions) – so while it’s definitely hard to do, befriending your condition will help more than it hurts. That said, it’s a stage of acceptance, and often a difficult one to find.

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