“Functional Neurological Disorder (FND) is a problem with the functioning of the nervous system and how the brain and body send and receive signals.” -FND Hope International
The Women’s Brain Project had the honour and pleasure of interviewing Tausha, a WBP supporter and young woman living with FND. She shared her experience from diagnosis and daily symptoms to giving advice on how to help support individuals like her living with this disorder.
The interview is available to watch on YouTube or even read below.
What is your name, where are you from?
Tausha: “Hello! thank you so much for giving me this opportunity to share my story with the Women’s Brain Project. My name is Tausha, I’m from the United States, I currently reside in Georgia, but I am originally from Michigan.”
What is your diagnosis?
Tausha: “My diagnosis is Functional Neurological Disorder. There are plenty of other sub-names for this disorder but I just go with FND overall.”
What symptoms affect your day-to-day life the most?
Tausha: “The symptoms that impact my everyday life the most are fatigue, chronic pain both joint pain and nerve pain. And then also brain fog because that just makes the day very confusing sometimes and makes productivity pretty difficult. Then the main thing that really affects me (it’s not every day but it does affect my everyday life when I am having flares) are the tics and tremors that I have. Because then I really have to become dependant on other people because of the fact that my legs don’t work as well as they should or I’m not able to get the words out that I want to and I’m not able to just function in general because I’m moving and trembling. So that is really impactful.”
Do you have good access to treatment and services that meet your health needs?
Tausha: “As far as access to treatment and services I feel like— honestly no, I would say that no I don’t fully feel I have good access to that. Because I feel like not many people do. I know that Functional Neurological Disorder is still being researched. The medical professionals are still trying to learn how to accurately treat and provide services for Functional Neurological Disorder so in the United States especially for me, I can only speak for me, people who get diagnosed get defaulted to mental health. So if you don’t go to mental health or even if you do, that’s kind of where the road stops unless you continue to very, very actively advocate for yourself. But it’s not as if I was set up with a team of people or a bunch of treatment options or a treatment plan as soon as I got my diagnosis.”
Let’s learn more about that— what was your diagnosis like in relation to not receiving the care you need?
Tausha: “When it comes to the diagnosis, I received the diagnosis. I received a link to a website and they said, “You’ll do well with this because you have pretty good insight.” So when it comes to having good access to treatment and services to meet those health needs I would say no.
I would say that I am not the worst case that I have ever seen. So maybe if my case was a little bit more severe or if it was more severe on an everyday basis maybe I would have had more treatment options or I would have had my provider provide me with more options. However, I didn’t even get checked-back in on as far as “What else can we do for you?” It’s more like “Are you okay? You should be okay because I told you to go to mental heath.” So it’s a little bit of a hard pill to swallow to know that I might not have access to the things that would make me be better. However, I just go ahead and try to be better with myself, I try to make myself better. I try to do everything that I can do for myself since I don’t have that access outside of myself.”
Have you experienced bias in your healthcare journey?
Tausha: “I will say I have felt some bias when it comes to my age because I have had providers say, “Well, you’re too young to feel this pain.” “You’re too young to feel this..” or “You’ll do fine because you’re so young!” So it’s kind of like— I don’t know that that is actually an appropriate statement or that that might be true. If I am coming to a provider and I am seeking help, I feel like regardless of the age that I am I should be able to get the help that I am asking for and that I am seeking but I have felt a little bias about that.”
What do you know about WBP?
Tausha: “The Women’s Brain Project is a non-profit organisation that focuses on women’s brains and it focuses on the fact that things are different between men and women. We have a lot of similarities but there are differences because of different chemicals, hormones and different things like that. And this organisation has a dedicated team of scientists and professionals that are trying to make diagnostic journeys and treatments better geared towards the sex and the gender that you identify with. That would help make access to treatment easier and allow people to get rehabilitation sooner. They really are partnering with people in the community, they are partnering with different companies in the industry. So they are really engaging so they can address the whole woman and her brain in order to help her heal. Which is so, so, so, so important because women are really the foundation of life in the world.”
What can we do to support you?
Tausha: “I feel like doing this interview is already support from the Women’s Brain Project because it puts our stories out there. It makes it so that we have a platform to speak on. It makes it so that we can be seen and heard and I love that. That in itself is the support that is needed for people to be seen and heard and believed. And so that is the support and we can continue to do this— interviews, and lives and different talks and podcasts and things— I think that is a major, major way to support women in general. Women in general who maybe don’t deal with anything but especially women who are dealing with issues in their brain because it can be very isolating. And so the support is showing that there is community and that you’re not alone.”
What do you wish more people understood about brain and mental disorders?
Tausha: “I would say, last but not least what do I wish that more people understood about brain and mental health disorders?
I would say that it’s real even though sometimes you can’t see it. And that we really do need support and that it’s not going to just be better overnight. There are going to be fluctuations in how we feel. So we might have a good day, a good week, a good month or then we can go into a flare or we can have symptoms arise and so it is a journey. I guess what I would want to say is brain and mental disorders is a journey.”
What advice would you give to those who want to help those living with FND?
Tausha: “Even though it happened in ourselves only, there are things in the world that we can’t control and that we can’t maybe understand as well anymore. Or maybe things that are not as accommodating as they are for more able-bodied people or more able-brained people— let’s put it that way. I think it would be better if people could understand that sometimes we need accommodations but other times we don’t want to be treated any differently. So it’s just support overall. So I would say just try and ask questions if you don’t know. If you don’t know and you are confused about anything— just ask questions. That’s how understanding can take place.”
Thank you for allowing us to learn about Functional Neurological Disorder through your story.
Tausha: “Thank you so much for allowing me to be a part of this again, my name is Tausha and I would love to continue to do work with the Women’s Brain Project.”
A note from WBP
No one should experience bias when seeking medical care. Everyone should have access to the healthcare services that they need. This is why the Women’s Brain Project is working to establish the first Research Institute for Sex and Gender Precision Medicine for a Precision Medicine approach for all. Please consider donating to our organisation.
Tausha suffers from Functional Neurological Disorder as well as other chronic conditions. Living by her mantra “Be intentional, Be faithful, Be humble” she trades negative energy and emotion for positivity and progress. Bringing relatability, and vulnerability while sharing a chronic ill life of unpredictability these weekly shows are sure to be applicable to anyone in or related to the spoonie community.
Follow Tausha on Instagram: @fndtea @taushatrades
Follow Tausha on Tik-Tok: @fndtea
Find her Podcast: fndtea.com