Youth Mental Health Awareness Day took place on the 7th September 2020, and in support, the Findacure team launched the #RareMinds: Youth Campaign. This campaign looked to highlight some unheard voices in our rare disease community with a focus on teens and young adults.
WARNING: This blog contains references to suicide, which some readers may find distressing.
As a charity working with rare disease patient groups, we wanted to support the Rare Youth Revolution and raise awareness of youth mental health in our community. The experiences faced by teens and young adults can be vast. It is not only young people with rare conditions that are affected in this age group, but also their family members and friends. The stories shared with us over the months of September and October have demonstrated the resilience and unspoken challenges of young people in the rare disease space.
Our #RareMinds:Youth Campaign began with Hannah Baker, who told us her perspective on her brother Joseph’s journey being diagnosed with C.R.M.O. Her brother also shared his story, giving us the perspective of two sibling in Texas, USA.
Zoyeb Mohamed Zia from Chennai in India, who is now 26 years old, was a very active, jovial and normal boy until he was about 15 or 16 years old. With the onset of Ataxia, a rare neurological disorder which there is no known cure for, Zoyeb’s father, Zia, tells us how drastically his son’s life changed in his younger years.
Our #RareMinds: Youth Campaign concluded with Amy-Claire Davies from Swansea in Wales. Amy was born with a condition so rare that it doesn’t have a name. She passionately focusses on the intersection between physical and mental health among young people living with rare conditions.
Rare diseases impact not only the patient, but also those who love them. The lives of siblings, family and friends are all affected by the illnesses these young people face. The people around them, however, also play a big part in enabling the strength and resilience they need to access treatment and follow their dreams. The support networks that surround these rare individuals are what many of them highlight as one of the main components in what has led them individually to gain positive mental and physical health.
Bullying & Social Stigma
Zoyeb and Joseph are both young men who found their teenage lives turned upside down as their health was impacted at such a young age. Joseph tells his story publicly for the first time through our campaign.
“You can’t see what’s going on with me because I try to hide a lot of it. I don’t like people knowing so this is huge because it’s kind of getting it out there for the world to know, so I can tell my story. You can’t see what’s going on with me. All my bones, it’s a lot of pain all of the time”
Like Joseph, Zoyeb’s family was fully supportive and his school principal even played an important role. The period of standstill up until now has been a long, tough and challenging period for him. He had to perform throughout his education while facing challenges. Apart from physical challenges, he also faced situations that ranged in stares to avoidance. On top of that, a rare disorder is not known or understood, and as such, some even suspected he was faking the whole thing.
“While the desire to change has to come from within, the outside situations also play an important role,” says Zoyeb. He believes that though there might be a desire in many to excel, not many would have the support or willpower to do so. Some could come to terms in a short period of time, whereas for others it might take longer. He believes that during struggling times it would not be easy for one to make proper decisions, and in the case of disabilities, the focus shifts onto the challenges one faces. The person’s abilities do not get attention.
Hannah also found herself impacted by the social stigma and bullying Joseph faced from his peers, which increased her concern for her brother at an already difficult moment in their lives.
“I was only able to see a few people, which made me feel even more alone and frustrated. In the past few weeks, I have realized who my true friends are and they have been incredibly supportive with everything that has been going on. I am a true believer that everything happens for a reason and I know that this has shaped me into the person I am now and how I treat people. Since Joseph’s disease is unknown and you can’t see visible proof of it, no one believed he was sick and often bullied and made fun of him. Seeing first-hand how he was treated, I now often try to give people the benefit of the doubt and think about the fact that we never know how people’s home lives are. I never talked about how I felt and how sad I was to see Joseph so sad and often let it eat me inside. I now know that that was not the best option and that my mom was always there for me to listen.”
Mental & Physical Health
WARNING: This section contains references to suicide, which some readers may find distressing.
Having been under palliative care since she was ten, Amy is now 26 years old. Amy discussed links between her health and the the resulting trauma she experienced just like the #RareMinds stories highlighted before her.
Amy described how she lives with OCD, PTSD, anxiety and depression. The effects of this became life threatening for more than one reason: “When I was younger, living with my physical and mental health caused me to become suicidal. I came very close to committing suicide”. Like Joseph and Zoyeb, she names her strong support network as a life-changing factor and the reason she feels so lucky. Amy got the appropriate support she needed to deal with her mental health, which ended up being an amazing psychologist who she met through her neurology rehab team.
“There are so many people out there that need really good mental health support to live with rare diseases and they need counsellors and psychologists who are trained to work with them and their very specific set of challenges”. Amy highlights the intersection between physical and mental health as being key when living with a rare disease.
Mental and physical health challenges are aspects that were addressed by all the young people featured in our #RareMinds: Youth Campaign. In the years leading up to Joseph’s diagnosis, Hannah reflected on how she felt during this time:
“My mom and dad were so busy taking care of Joseph I felt like I was just there for relief, a break from the chaos of schedules, meds, and infusions. I tried to create the least amount of stress and problems I could. I kept good grades, never caused trouble and kept my friend drama and feelings to myself. I constantly tried to make my parents jobs as easy as possible because I knew they were stressed with everything going on. I stayed that way for a while until I told my family. They felt bad and said they wished I never felt that way, but I don’t regret giving my parents a break from worrying.”
The long-term effects that rare conditions have on young lives is described within Amy’s touching personal account. The Degenerative Multisystem Disease she lives with is described in her own words as “a really fancy word for nothing works and we really don’t know why.”
#RareMinds & Young People
Each of these stories have been featured throughout October and can be read or watched on Findacure’s Facebook page.
Our #RareMinds: Youth Campaign has taken us around the world from Chennai to Swansea, through the eyes of a loving sister in Texas and to the start of a teenage boy sharing his story with the world for the first time. We are honoured to have featured these voices and raise awareness of the strength in each of these young lives.
Help us raise awareness and share the voices of young people living with rare disease – together we are strong!
If you or someone you know are struggling with mental health, please contact the organisations below for help.
You are never alone.
- Phone: 116 123 (free 24-hour helpline)
- Website: www.samaritans.org.uk
- Phone: 0300 123 3393 (Monday to Friday, 9am to 6pm)
- Website: www.mind.org.uk
More mental health helplines: https://www.nhs.uk/conditions/stress-anxiety-depression/mental-health-helplines/
As part of this campaign, we urge you to follow Rare Youth Revolution.
About Rare Youth Revolution
The Rare Youth Revolution is an online platform that’s powering up young RARE voices to be heard to help empower a future generation of rare disease advocates. The platform enables each individual to express themselves through their chosen medium, whether that be through written word, spoken language, vlogging, art or any and all means that resonate with them.
The platform’s content is entirely created by young people for young people, because Rare Youth Revolution understands that it’s not easy for young people to find a space where they feel comfortable to open up about living with a rare disease. With that in mind, they have created a fun and interactive news platform for like-minded young people to share their rare disease journeys and open up about how they truly feel about growing up in the world with a rare-difference. Their goal is to make sure that no one is left unheard and that young people from all over the world feel like they have somewhere and someone to turn to when looking to discuss their RARE journey.
“Approximately 400 million people worldwide live with a rare disease, almost 50% of these are children and young people, and many more may be a young carer, supporting a loved one.” (Rare Youth Revolution, 2020)