In this month’s interview we talk with Paige who has a rare skeletal disorder.

Hello Paige! It is great to talk with you today. Could you please tell us a little about yourself?

Hi my name is Paige and my preferred pronouns are she/her! I like to use the terms: a person with disabilities, a person who has a chronic illness, and invisibly disabled. I’m from Ontario, Canada. I am an only child and I have a black lab! Some of my favourite hobbies include reading, baking, and watching movies. I juggle a few different jobs, I am a full time Educational assistant, full-time chronically ill and disabled person, and I like to think of myself as a content creator.

Do you have a diagnosis for your symptoms?

I have a rare skeletal disease called Klippel-Feil Syndrome (KFS) which means I have 2 vertebras that are fused together in my cervical spine. Because of this I have chronic pain. It is developed while in the womb, so I was born with it. It affects more assigned females at birth than assigned males at birth. No one knows what causes it, it’s deemed to be sporadic, meaning it’s not inherited or a genetic cause. 

I also have migraine disorder. On the flip side migraine is genetically inherited! If one parent has migraine there is a 50% chance the child will inherit it. If both parents have migraines there is a 75% chance the child will inherit it. Migraine is a complex neurological disorder characterized by episodes of moderate to severe headaches, sensitivity to light and sound, and nausea. It normally occurs starting at puberty and is also more common in assigned females at birth. 

Some of the main symptoms I experience are pain in my shoulders, neck, head, jaw, pecs and trapezius muscles, constant headaches, brain fog, trouble sleeping, sensitivity to sounds and light, and fatigue. 

How long did it take for you to get a diagnosis?

It took me until I was 20 to get diagnosed with KFS and I had on-going chronic pain for a few years before this got diagnosed. I got diagnosed with migraine when I was in grade 9, I was 15 and had been experiencing migraine attacks since I was 11. 

When did you first realize that you had chronic illness and how has your journey been since then? How has your experiences of the world changed since your symptoms started?

Definitely this year I realized I had a chronic illness as I was in a constant state of pain. I didn’t realize that having migraines was an invisible disability until this year as well. I’ve been able to advocate for my own needs as well as share my story on social media. I learnt to be an advocate by doing my research as well as talking about being chronically ill and not being scared to share it. 

I’ve been able to see that a lot of places and people aren’t as accessible as I wish they could be, especially when my disability isn’t visible. I wish people wouldn’t look at me funny if I sit in the disabled seating or sit down. Just because I’m young doesn’t mean I am healthy and able-bodied. 

Which of your symptoms do you find the most debilitating and why?

My head hurting when I have a migraine is the most debilitating because it is hard to focus because of the pain.

Can you describe what a bad day symptom-wise looks like to you?

A bad symptom day includes me feeling super unwell, I feel nauseous, my entire body aches, I feel exhausted and my head will also hurt. When I experience a bad symptom day I like to lay in the dark in bed with an ice pack on my head, in silence while trying to sleep, if I am home and able to. 

When you have a good symptom day, what do you like to do?

When I experience a good symptom day I like to bake. 

What has been the most helpful for you as you have gone through this journey?

Being able to find a community on Instagram. 

Thank you Paige! You can follow along with Paige through her Instagram account @paigethewellnesswarrior