Aimee’s Story

Symptoms

Functional urinary retention

Overactive bladder

Dissociative Seizures

Intermittent paralysis

Functional Somatic Symptoms

I have two functional syndrome diagnoses. In 2016 I was diagnosed with Fowlers syndrome, which for me started in quite a dramatic way with not being able to pass urine. This is called ‘going into retention’ in medical language. I was diagnosed a few years after this with Functional Neurological Disorder, after going into paralysis from the neck down. I was in hospital for 5 months after this, and while in hospital I began having dissociative seizures.

In many ways I am doing well today, and have something like a normal life back. I have a boyfriend, go on holidays and have just started a new job. But I have to do all this while managing my symptoms. Its not easy and I am still learning the best ways to balance things.

The symptoms that have the biggest impact on my life today are:

1. Bladder problems made worse by my indwelling catheter, such as spasms, pain and leaking
2. Dissociative seizures.

The trigger:  a medical diagnosis

At age 18 I was diagnosed with Crohn’s disease. Crohn’s disease is an inflammatory disease of the bowel. It is classified as a is a structural, not a functional disorder. But as you will see, in my story, getting this diagnosis was the start of a cycle of health worries and problems that have resulted in the symptoms I have today.

At the beginning, not knowing what impact Crohn’s would have on my life, made me feel so scared. I had never been to a doctor much when I was young, and then all of a sudden out of nowhere I was told I had this disease for the rest of my life.

As a teenager I was an Irish dancer, I was so invested in fitness and dancing. Now everything had come to a very abrupt halt. I became stuck in life, I had no idea who I was or where life would take me anymore. My once carefree life, now felt like it had disappeared. I questioned everything I did and lost all self-confidence.

Bladder symptoms

In March 2017, I stopped passing urine. This had happened once before, when I was in hospital with a kidney infection, but this time I was just at home. My doctor sent me to A+E, where they found I had 2 litres of urine in my bladder. They put a tube into my bladder (called a catheter) at this point to help the urine drain out.

Shortly after this, I had tests on my bladder and this way I was diagnosed with Fowlers’ syndrome. This meant there was a problem with the way the muscles around the bladder were functioning: the pelvic floor muscles were not relaxing like they needed to, to allow me to pass urine.

Looking back now, I wish I had been more firm about having the catheter removed swiftly, or been offered alternatives like self-catheterisation at that point. However the doctors discharged me from hospital with the catheter still in, and I didn’t question it at the time.

I have used a catheter ever since, and now my bladder has got so used to it, that it has become more and more difficult to remove it, but at the same time causes me more and more problems. Over time the catheter has caused repeated infections. Now my bladder spasms if there is any urine in it at all, causing me pain and leaking around my catheter site.

In the last few years I have started working with pelvic physiotherapists and psychologists on this problem, but perhaps it has been too little too late, nothing we have tried has worked so far. I wish my bladder had not got used to having a catheter. Because  I feel like my bladder is in worse condition than it was at the start.

The role of stress and worry

When I am stressed, I’ll have a lot more pain during the day, more bladder spasms and leakage.

But the other thing I notice is that when I get stressed about my bladder, my other functional symptoms start to build. Stress is definitely a link between all my symptoms.

When I feel myself getting stressed, I tend to avoid facing up to the things that are stressful. I will do stuff to distract myself. But I have began to realise that that’s not a good strategy, because it will all get too much and then I’ll end up having a seizure.

For example, the last time I went on holiday, I felt really relaxed and my symptoms were really good all week. Then the day before I was due to come home, all these silly thoughts are coming back into the head, like ‘I have to go home and deal with my bladder now. What if I end up in hospital again’. All the worries were just bubbling up and eventually like the Volcano erupted. Then I went into full body paralysis.

I did see a psychologist for a while. But it was kind of like a day to day, like ‘how are you this week’, It wasn’t really like strategies to deal with worries. So, I’m kind of still figuring that one out.

Dissociation

I first had a dissociative seizure back in 2019.

It was during the time that I was in hospital with functional paralysis. Because I had not been able to move my foot, I had developed some tightening of the tendons. I was put under general aneasthetic to have a surgery for this problem. However, when I was just coming out of aneasthetic, I started shaking violently. The medical team couldn’t get me to stop. So they sedated and ventilated me and sent me off to another hospital. In the end I was diagnosed with functional (or dissociative) seizures.

I actually had another operation to lengthen the tendon on my foot the year later. And again when I had the anaesthetic I had another seizure. After that I had seizures more and more often.

The funny thing was that I only ever had seizures when I was in hospital, until 2021 when I was coming home from New York on the plane, and there was really bad turbulence. I’m normally fine with flying, but this time, I remember it very well, I was awake and I just could not stop myself from shaking. My mum was asleep beside me and I was trying to wake her, but I couldn’t do anything or say anything. I came home anyway. That night after I came home I had back-to-back seizures.

But I have only ever had seizures a few times at home, most of them have all been in hospital.

Interactions with healthcare: cycles of worry and harm

Unfortunately I have had quite a few incidents in hospital that has made hospital a traumatic kind of place for me. My functional paralysis and seizures first emerged while I was in hospital, and I think it is related to the stress. Unfortunately this has been part of a vicious cycle. The more functional symptoms I have had, the more time I have spent in hospital, and the more stressful interactions I have had there.

When I was first diagnosed with Crohn’s disease, my consultant was not a very nice person. I had just turned 18 at the time, and my Mum used to come to hospital appointments with me. The consultant would make harsh comments to my mum, telling her I was old enough to deal with things myself, and there was no need for my mum to come to appointments with me. I got the impression he wasn’t taking my symptoms seriously, he kept telling me that I was just constipated, and my Crohn’s wasn’t that bad.

That year, which was a really worrying time for me, things got to the point with my bowels being blocked where I had an emergency surgery. The surgeon told us that the disease had needed to be removed, but my consultant kept insisting that the surgery had been unnecessary. Getting those mixed messages worsened the lack of trust and I changed hospitals shortly after that.

Unfortunately after the emergency bowel surgery I had, I developed some blood clots on my lungs. I had chest pain and tightness and difficulty breathing. The difficult part was that the nurse who was looking after me was convinced it was anxiety related and didn’t get me medical attention until I saw the doctors the next day.

Another frightening thing that happened whilst I was in hospital, was that during an early episode of functional seizures, the doctors did a brain scan. They thought that they saw a pituitary tumour on the scan and began to rush to get me ready for emergency brain surgery at a different hospital. Thankfully they realised in time that this was not necessary, but it was very stressful.

I also have had the experience of having a seizure while a doctor stood over me, holding my eyes open and telling the nurses I was faking. These sorts of experiences have not helped me feel comfortable to be in hospital, and are a large part of why hospitals are such a stressful place for me.

My changing relationship to my body

A couple of years ago, I had got to the point where I was really focussed on my body and noticing what was going wrong all the time.

I would start worrying like ‘Last time my foot went numb, I ended up in a wheelchair. ‘I’m going to be in a wheelchair tomorrow’. So I automatically go to thinking the worst possible thing.

What’s helped: physiotherapy

Thankfully, I have found an amazing physiotherapist and psychiatrist who are on hand to help with any functional symptoms that arise. In the last couple of months, I’ve kind of got my life back, if that’s what you want to call it. I was actually forgetting that I had functional symptoms.

At many points throughout my journey, I lost sight of the hope that there is a life without illness. Physiotherapy has helped a lot.

I might just be my physiotherapist, but she in honestly amazing. She specialises in FND. She is the one who will turn around to me and say the exact right thing that helps. She makes me aware of things that I could not see by myself.

For example, a few weeks ago, my foot was getting kind of tight again, and I noticed that I was having to use crutches again. was like, oh, I’ll just get botox. It’ll be a quick fix, will be fine, but I wasn’t actually looking into why things were going in this direction.

So I went to the hospital to get botox. They always cast it after. But they put the cast on too tight, so I had to go back in to get the cast removed. So there was all this stress that came from my quick attempt to fix the problem. My Physiotherapist came to visit me in hospital during this time and kind said to me ‘You know Aimee, when the foot is getting tight, there is a reason behind it.’

What’s helped: liaison psychiatry

After many years of suffering and trying to find doctors to listen, understand and help me with my condition, I finally met my consultant in Liasion Psychiatry June 2022. From the moment I met her she listened, I felt she understood me and I finally have some support. She will take time to explain why things are the way they are for me, and point me in the right direction if I need advice. She has also had my family in for meetings to teach them and help them understand my illness. Since I have met my consultant, I had the best year with my illness and I truly believe its all down to how amazing she is. I see my consultant once a week at the moment and as my illness calms down I will see her less often but I know I can contact her if I need to. I will forever be greatful for her support.

What’s helped: discussing things with my partner

My boyfriend is also really good at knowing when things are nor right. He kind of knows by the tone of my voice. Before, when he asked me if there was anything wrong, I would always go ‘no, nothing, its all fine.’ But now when he asks me what is wrong, I take it as an opportunity to listen inward to the body.

My boyfriend has suggested, that to try and stop worries building up to the point where I get symptoms, we could take half an hour every evening just to sit down and discuss things that have been worrying me throughout the day. That might help, so I’m going to give it a go.

Doctors Note:

Aimee’s story is particularly complex. She has had a very difficult time, particularly in relation to her experiences with health-care. Some of this complexity comes because Aimee’s story is a mixture of problems with non-functional disease (for example crohn’s disease, urinary tract infections) and functional symptoms (seizures, paralysis, initial bladder problems).

To be clear, surgeries, or invasive procedures like having a catheter inserted are hardly ever appropriate treatments for functional symptoms. As you can read in Aimee’s story, this sort of approach often leads to a worsening of functional symptoms.