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Stories
Morgan's story
Hi, my name is Morgan! I was born with a congenital disability called optic nerve hypoplasia. This diagnosis means my optic nerves are less than 20% of the normal size, I have no depth perception, and no peripheral vision. I do not “look” like I have severe visual deficits and often hear “you don’t look blind” when accessing accommodations. As an occupational therapist, I have personally made it my goal to educate others about my invisible disability and the invisible disabilities of my students.
Rachel's story
My name is Rachael. I suffer with Chronic Lyme Disease. I got sick at the age of 13 and was initially diagnosed with Post Viral Fatigue Syndrome/Chronic Fatigue Syndrome. I wasn’t diagnosed with Lyme Disease until I was 16 due to a lack of knowledge in the medical profession about Lyme. When I got sick, I had to stop playing sports as I had severe widespread pain. I missed a lot of school due to chronic fatigue and pain; for 5th and 6th year I attended school for about 6-8hrs per week. This illness has severely affected my social life and education, but I’m in college now and am managing better than I was a few years ago.
Aisha's story
My name is Aisha, I suffer with Myalgic Encephalomyalitis/ Chronic Fatigue Syndrome and Sleep Phase Shift Disorder. I got sick when I was around 14, in 2nd Year. I used to dance twice a week but I had to give that up, and I completely disappeared from all social activities and school. I had to move school for 5th year but I'm learning to maintain, I was housebound for four months at one point, and spend most of my days in bed. I can't stand or walk for very long, and for big events I use a wheelchair but I'm hoping I'll learn to manage school and social life eventually
Grace's Story
My name is Grace, I’m 20 years old and I have type 1 diabetes. If you were to look at me you wouldn’t think that there was anything wrong, only the people closest to me know that I have an invisible disability. I was diagnosed with diabetes when I was 3 years old. A normal pancreas produces insulin, a vital hormone produced to keep blood sugars under control, I however have to inject insulin multiple times daily just to survive. Everyday is hectic but it’s all I’ve ever known as I was diagnosed so young so it’s always been my way of living. For as long as I can remember my life has revolved around hospital appointments, hypos, trying to keep my blood sugars under control, insulin intake and worry about future complications caused by my diabetes. As difficult as it is to deal with at times, it has also given me so many amazing opportunities and has allowed me to meet other people living with diabetes, showing me that I’m not alone on this journey. It’s taken some time but I’ve learned to accept my diabetes and instead of being embarrassed about it, I try my best to educate others on it too.
Ciara's Story
My name is Ciara. I was 9, when I was diagnosed with a neuroblastoma which presented itself, through ataxia. I had surgery to remove the tumour, but the opsoclonus myoclonus did not go away. I was then placed on a high dose of steroids once a month for a year after, and my balance and speech was back to normal. About 5 years later, I began to experience epileptic seizures. Along with this, gradually over time, I began to lose my hearing. I was diagnosed with Simple Partial Temporal lobe epilepsy, and a moderate sensorineural hearing loss. About 3 years a doctor suggested that all of these conditions were linked and a Lumbar puncher was arranged. This gave the results of the same antibody that was present during my cancer, proving an underlying autoimmune disorder. From then, I was put on IVIG (immunoglobulin therapy) to fight the antibodies. This treatment has shown positive results with my seizures, but not with my hearing, we will more than likely never know why, but I’ve accepted that for now.
Becka's Story
My name is Becka. When I was 14 I began to have severe stomach pains and vomitted any time I ate. For months I was back and forward to the hospital before I developed a sharp pain in my right side and I was hunched over in pain. the hospital took my complaints seriously and they discovered I have Crohn's Disease. I had a hole in my intestines (fistula) that caused a huge abscess to form. The surgeon insisted surgery was the best option but mam wanted a second opinion. I was sent to Our Lady's Children's Hospital Crumlin where she was informed that due to the size of the abscess surgery was too risky and could be fatal. I spent several months in Crumlin on several IVs and no food. I was fed through a PIC line in my arm and also had to take several nutrition supplements. My treatment consists of a high dose of Inflectra via IV which is only administered in hospital every 6 weeks. Unfortunately there is no cure for Crohn's and this is something that I will have to deal with for the rest of my life
Hi everyone, I have Hyper Mobility Disorder. I was diagnosed when I was 15. It started affecting me when my wrist became very sore from writing essays for the JC. My knees then started hurting really badly and I had to have physio for it. It lead me to having to quit dancing because I couldnt keep up physically. HMD can cause my joints to pop out of place or lock into place. Both of which are extremely painful which leads to me facing a few difficulties in my every day life such as needing assistance with college. I often times feel uncomfortable on buses when I go to sit in the disabled seating because my disability is invisible and I am less able to stand.
Ellie's Story
My name is Ellie. I was diagnosed with sciatica in my right side when I was 12. I was very sporty and by aged 16 I had completely given up all sports due to severe pain after every training session or match. When I was 18 I was also diagnosed with vertigo on the left side and IBS. I’ve never had to undergo surgeries, however, I’ve been in countless physio rooms for the last 8 years trying to work to make my condition more manageable. I then developed brachialgia in my shoulders due to a the pressures of school and intensive study. I still find it hard to sit or stand for long periods of time affecting my day to day life. It’s been a hectic ride but my condition has become a lot more manageable again.
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