Today is the first time I’m celebrating FND Day and with Purple Day just hours away, it’s a busy week for me to say the least.
Today I’m explaining more about FND as even close friends know that I have it but have no idea what that means for me.
Let’s start with the basic, FND stands for Functional Neurological Disorder.
FND can be caused by psychological triggers, physical triggers and a mix of both. In my case it’s a mix of both. It’s important to understand all possible types of triggers as this can affect the type of treatment needed.
As FND has a long list of symptoms, with each case experiencing different symptoms in a way that’s unique to them and presents in both physical and mental manners it’s important to get the adequate treatment.
For example, I experience extreme anxiety that’s hard to treat but we try with neurpsychology with medication from my neuropsychiatrist.
I also experienced functional limb weakness for 4 consecutive months in 2019 and now need physical rehabilitation to help me walk again. Psychology obviously would not help with this symptomatic problem.
It must be understood that FND symptoms can’t be controlled. If it could I’d rather be in dance class or ice skating with my best friend instead of learning how to walk again by myself. I also would never make myself have a non-epileptic seizure, where I can hear and feel everything, as that only adds to my psychological trauma and triggers.
For some FND is treated adequately and soon after it’s triggered which can lead them to only having a temporary disability. Unfortunately, not everybody is this lucky.
Sometimes it really is just about luck, some people don’t respond to treatment as well as others, but a lot of the time it comes down to the fact that people can’t be diagnosed soon after being triggered as doctors aren’t as aware of FND as we’d like. Once being diagnosed, people with FND also must face doctors who aren’t well educated but don’t wish to admit it. Some doctors simply don’t know what they’re doing with FND treatment and even try to treat all symptoms with psychological options even if the symptoms presenting have nothing to do with the psyche.
This means some people, such as me, are left with a permanent disability.
Despite the fluctuation in how long the disability lasts and the variation in who ends up with a permanent disability, FND is definitively a legitimate disability.
However, professionals seem to be behind on the times, yet again.
According to the classification guidelines of the International Olympic Committee for para sports, functional impairments are not a recognised/eligible impairment.
This stops talented, authentically disabled, athletes from following their goals.
Something needs to be altered there and I hope when the time comes, I have your support in the fight for change.
In the meantime, here are some ways to help those with FND or make things more accessible for us;
- Make sure everywhere is accessible to mobility aid
- Keep in mind that for some, some of their symptoms can be triggered by sensory input so consider the environment you’re creating
- Our symptoms can include or cause fatigue so please be patient with us and please be understanding if we need to alter or cancel plans because of it
- Be patient with us during dissociative attacks, memory or concentration struggles, speech troubles
- If we have pain problems caused by our FND (CRPS for example) please be considerate of what could cause us more pain and what our pain limits us from doing
- No matter how funny you think it is, don’t laugh at the hick-ups our symptoms cause until it has been clearly established whether the person with FND is comfortable with that. (For example, I don’t mind laughing at my speech mishaps in most instances but for some it’s a major insecurity)
I hope you learnt something new and now better understand the condition that’s by my side every day this FND Day!
Purple Adventures 