“Multiple Sclerosis (MS) is one of the most common diseases of the central nervous system (brain and spinal cord).” -MS International Foundation
MS is the most common disabling neurological disease in young people. People with MS are 2 to 3 times more likely to experience Migraine. People with MS are also more at risk for developing Functional Neurological Disorder (FND).
The Women’s Brain Project had the honour and pleasure of interviewing WBP Supporter and Disability Advocate, Allison Dye for our WBP Let’s Learn Series. She first experienced symptoms of MS at 8 years old, but was not correctly diagnosed until she was 18 years old and was diagnosed with Migraine and FND shortly after. She shared her daily MS symptoms with us as well as how her secondary diagnoses affect her.
You can read her interview below or view it on YouTube.
Learn About MS with Allison Dye
Tell us about yourself!
Allison Dye: “Hello my name is Allison Dye, I’m 24 years old, I’m Italian-American and I live with Multiple Sclerosis, Migraine and Functional Neurological Disorder.”
What symptoms affect your day-to-day life the most?
Allison Dye: “When it comes to Multiple Sclerosis I would say that the worst symptoms that affect me day-to-day are fatigue, meaning that I get tired quite easily compared to people my age or even people around me. Often, even a task like taking a shower for me can be really exhausting. Also, pain, which was one of my very first symptoms; I have pain all over pretty much constantly.
So when it comes to migraine, I would say the worst symptoms, besides the pain itself (which is not the pain of just a normal headache), are probably nausea and the cognitive difficulties I have afterwards. I often describe it as feeling as if my thoughts have to move through clouds so I’ll have difficulty remembering words, knowing how to communicate clearly or focusing or concentrating on something. I’ll miss like really small details because it’s just really hard for me to focus at that moment. This can last even for the rest of the day.
Then when it comes to FND, I would say that tics, spasms, inability to speak sometimes, tremors, inability to walk, or sometimes even control opening and closing my eyes— these are all very debilitating.”
Do you have good access to treatment and services that meet your health needs?
Allison Dye: “I feel like in regards to Migraine and Multiple Sclerosis I have all of the services that I need, I was given great treatment options and I think that’s what made it so, so hard when I received my Functional Neurological Disorder diagnosis because there weren’t as many resources, treatment options, or even specialists that could help me.”
Have you experienced any sex or gender bias in your healthcare journey?
Allison Dye: “As a child when I first got sick I was about 8 years old, and I remember as both a child and early teen that doctors often disbelieved me because of my age. A lot of doctors and healthcare professionals thought that I was making it up or just wanting attention or wanted to get out of doing something I didn’t want to do like go to bed, go to school, or do some chores around the house. I think that the trauma of experiencing age bias stays with you for the rest of your life. Even when my parents were such good advocates for me it was still difficult because if the doctors didn’t believe me because I was so young, my parents could do very little to convince them.
As I’ve grown I’ve encountered sex and gender bias from doctors waving off symptoms or problems as being my hormones, as being ‘well, maybe you’re about to have your period’. This is dismissive, and it feels really, really terrible. I’ve also experienced, being waved off as having a ‘mental problem’, especially in regards to my FND diagnosis. I’ve been told that it was maybe anxiety or that I just needed to go see a therapist because I was really stressed. We know from data and research that women are often dismissed because they believe they’re just being ‘hysterical’.
Bias should never exist in healthcare. I have no words to describe the precise feeling I have felt when encountering these biases, I just know that I never want it to happen again and I don’t want it to happen to other kids, other women— or anyone else.”
What do you know about the Women’s Brain Project?
Allison Dye: “So the Women’s Brain Project is an organisation working to establish the first Research Institute for sex and gender Precision medicine. Historically, we know that medical research was focused on male anatomy and biology, and the Women’s Brain Project is looking to change that by looking at brain and mental disorders through a sex and gender lens.”
Why is the work of the Women’s Brain Project important?
Allison Dye: “So the work of the Women’s Brain Project is so important, not only because they’re working to establish this Research Institute, but also because of what they’re doing now in research and what they’re doing now to raise awareness on brain and mental disorders and bringing attention to the importance of sex and gender differences in all of these brain and mental disorders.
Not only are they bringing awareness within the scientific community, within the community of researchers but they’re also bringing awareness to healthcare providers, patients, the lay public like employers, and policymakers too.
I think that this work is especially inspiring just because they do listen to people living with these disorders because they care about their stories and they care about what they have to say about this. I think that any organisation that wants to hear from all sides because they want to make a change and they understand that change has to be made by bringing all of these people together— I don’t know, I think that is beautiful and I think it is going to be the way that they change the world.”
What do you wish more people understood about brain and mental disorders?
Allison Dye: “People often say, ‘but you don’t look sick’ and there are 3 dangers that I see with this statement.
- While it may seem harmless or like a compliment, I think first off, it can seem really minimising, it can seem like you’re doubting what they’ve just told you or shared with you like you don’t believe them, like you’re questioning whether it’s true or not. And if someone has told you that they live with a brain or mental disorder: believe them.
- Secondly, I think that it can be said in a moment of doubt when someone is asking for help. So ‘but you don’t look sick?’, and at that moment if someone with a brain or mental disorder is asking for help or is asking for additional resources or services to better help them as they live with a brain or mental disorder— whether it’s a work accommodation or healthcare or a mobility aide— it’s not up to the person to decide whether they ‘look sick enough’ to need that help. I think once again, that’s dangerous.
- The third problem, I see with this is that there are a lot of stereotypes and misconceptions around what ‘sick people’ should look like, or how they should act and this is just problematic because everyone’s different. Every individual in the world is different so it’s not that surprising that people with different mental and brain disorders— even if they have the same diagnosis— may look, act, or seem different or have different various symptoms.
So I think that’s what I wish more people understood.
If you had one message of hope for those living with a brain condition, what would it be?
Allison Dye: “You need to know if you’re living with a brain or mental disorder that it’s not your fault. This is something that I felt with every diagnosis; wondering how I could have prevented it or what I could have done. The truth is: it’s not you’re fault. And carrying that guilt or shame or embarrassment isn’t going to help you in the long run. So please just know: it’s not your fault. And you’re not alone: there are a lot of us out there.”
Thank you for allowing us to learn through your story.
Allison Dye: “I want to thank everyone at Women’s Brain Project for the amazing work that they are doing, and I also want to thank them for interviewing me today. It means a lot to be heard, to be listened to and Women’s Brain Project is listening to our stories, to our experiences, and they’re making real-world change and that means the world to me.”
Support the Women’s Brain Project
No one should experience any form of bias when seeking medical care. No one should feel shame or embarrassment when receiving a diagnosis— we must break the stigma around women with brain and mental disorders. 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.
About Allison Dye
Allison Dye is Italian-American, and grew up as a “Third Culture Kid”. She is a disability advocate and co-founded the Italian online community and podcast called, “Ma Non Sembri Malata” (“But You Don’t Look Sick”) with her best friend Nicole Calvani to share the stories of people living with disabilities and invisible illnesses. She also created the first Italian social media pages to raise awareness of Functional Neurological Disorder.
Her website: allisondye.com