Q: Tell us about you?
What health conditions do you have and how have they affected your life?
My name is Rae. In 2017, I was diagnosed with FND and Functional Seizures. I am also diagnosed with partial blindness, migraines, serotonin syndrome, hEDS, and POTS. I am currently undergoing testing for my bowel problems. These conditions have a massive impact on my life, and I also suffer from PTSD, Anxiety, and Depression.
I’ve had seizures since I was born. There were many blanks throughout my childhood; I remember going in and out of the hospital and being on medication. Despite suffering for so long with my health, It took decades for me to get answers.
When I was finally diagnosed with FND & Functional Seizures, I initially felt relief. It helped to have a name, a ‘label’, that explained everything I was going through.
But that relief was short-lived as I had to come to terms with the fact that there was nothing anyone could do to help me. There was no easy fix, no pills or tablets to take to stop the seizures, memory loss, severe fatigue, weakness, and all the other symptoms that prevented me from living a normal life.
I rely on my loved ones to help me manage daily tasks - I can’t cook dinner or clean the house, even the most basic chores I can’t do.
When I’m having a bad day, my thoughts can turn dark. I often feel like I am a burden and am constantly aware that this isn’t how things should be.
I carry so much guilt because my family shouldn’t have to look after me, but when my thoughts go to that dark place, I try to think of my family and how I couldn’t leave them with all the pain, hurt, and guilt. Even when I don’t feel okay, I know I have to try to be okay for them.
If you are interested in learning more about Rae's diagnosis FND please click the box below for further information:
FND (Functional Neurological Disorder)
Functional neurological disorder (FND) describes a problem with how the brain receives and sends information to the rest of the body. FND can have many symptoms that can vary from person to person, including Functional Seizures as Rae mentioned above.
Q: What has been your biggest challenge, or hardest thing you have had to come to terms with, since your diagnosis?
The biggest challenge for me so far and still now is my confidence. But day by day I’m slowly building myself back up.
Not every illness is visible - and on days where I have to deal with people questioning if I’m as bad as I say I am because I ‘don’t look sick’, I wish I could scream it from the rooftops.
There is so much that even those closest to me don’t know. There are days when I break down because I can’t even get out of bed myself to go to the toilet or when I end up sobbing because I’m not able to spend time with my kids.
It hurts so much to hear other people moan about doing the washing up, ironing, cooking, or even taking their kids to school when these are things I would do anything to be able to do again.
Before I became disabled, I didn’t realise how much I took for granted.
I have to rely on mobility aids so much now. I miss being able to get up and go and see friends & family spontaneously or taking my kids to the park and being able to play with them. Being able to get up to make tea or go rollerblading or dancing (both of which I loved).
The small everyday things I used to take for granted I now cherish whenever I am well enough to do them. The simple things mean the most to me now.
Q: What is an achievement you're most proud of since being diagnosed?
Since my diagnosis, my biggest achievement has been getting my fashion design and dressmaking diploma.
One thing I have learned from all of this is that you can’t let your disability stop you from going for your dreams! and I have always dreamed of being a fashion designer.
So I decided I would go and get this qualification to be able to turn that dream into a career that works around me and my health. I have launched an online shop to sell my designs and I’m so happy and proud of everything I have created so far.
Q: Despite your challenges, what keeps you going and brings you joy on difficult days?
I have created a support group for those with FND. Advocating for the spoonie community, meeting new spoonies and raising awareness for everyone suffering from chronic illnesses brings me a lot of joy and gives me a purpose!
I love documenting my health journey on my Instagram as it has helped me connect with others going through a similar experience and makes me feel less alone. On days when all I can focus on is things that I haven’t done or can’t do, I can look back through my past posts and realise that I’ve achieved so much!
When you start seeing the small wins as big achievements it can give you a much more positive outlook. I’m proud of myself for how far I’ve come.
Follow Rae on Instagram: @unwireddesigner
Q: If you could give someone who is at the beginning of their journey one piece of advice, what would you tell them?
Remember our disabilities and disorders are not a one size fits all. It may be the same name, and the same symptoms, but we are all different people with different lives. Remember this when you watch other people who may have the same conditions as you on social media. Always do what is best for you.
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