CAMHS Equality Champions raise awareness of invisible disabilities

Posted by Devon Partnership Trust in CAMHS, Carers, Mental health, News on 27th May, 2021

Invisible disabilities, also known as hidden disabilities, are disabilities that are not apparent straight away. This can lead to misunderstandings, false perceptions and judgements. Everyone is different, and every disability affects people differently.

1 in 5 of the UK population are disabled and 80% of these people have a hidden disability. That's over 10 million people in the UK who have a hidden disability.

The CAMHS equality, diversity and inclusion group would like to raise awareness and understanding of this topic, starting with the story below from one of our CAMHS Young Advisors.

Why I think spreading awareness on invisible/hidden disabilities is important

"I believe that talking and opening a conversation about invisible/hidden disabilities is important because they are not commonly known about. Unless you have a close friend or family member with an invisible disability, you may not have knowingly come across someone who has a hidden condition.

"I’m 19 and have ME/CFS (Chronic fatigue syndrome). My CFS has gone through numerous layers of how able I am in my everyday life. It’s worth noting that my condition can change hourly, let alone daily or weekly. It is really difficult to have to explain this to those who are unaware of my condition and exhausting. I’ve even had to explain to my doctor. I went in for an unrelated problem and left a sheet with information in the waiting room. At the time I struggled to walk a small distance and I had no mobility aid. I asked him politely if he’d mind going and getting it for me. His reply was an astonished "What!" ‘"Really?". I replied saying, "I have ME and it’s a lot for me to walk there and back". He did get the paper for me and apologised at the end of the appointment, but for rest of the day I felt anxious and bad about the situation thinking "I should have just gone and got it, why did I make the situation uncomfortable?" He had my whole medical history and I still had to explain.

"This is why I’m so passionate about spreading awareness and giving a voice to those who may feel uncomfortable or not listened too. I hope some of the explanations I often feel pressured to disclose can be lightened for others who live with similar disabilities or have had similar experiences.

"There’s a lot of stigma with invisible disabilities. I know for ME, the campaign is that the disease is physical not mental. People are often not believed when they say they have a physical condition. Others also may not recognise that someone may have a disability, even with a mobility aid. Depending on the distance, how I feel that day or the ease of access, I either go with or without my wheelchair or stick. Being young, people might assume I don’t have a disability because mobility aids are often associated with the elderly. Even when my disability is more visible it can still feel invisible. One day I walked up my road with my stick and a man in an open topped car pulled up and was on his phone. I walked past and I just knew he was going to speak to me despite trying to avoid eye contact. He said "What have you done, hurt your ankle or something?", indicating my stick. I was a bit taken aback and surprised he felt it was appropriate to ask a random stranger in the street a personal question. I kind of mumbled "I have a ME so I use it to help me walk". He then responded to this by wishing me luck for the future. It was such an odd experience. I felt I owed him an explanation as to why I have a stick. With hindsight, it was none of his business and I shouldn’t feel like I need to prove my disability to strangers who don’t know me or even people who do.

"Thank you for taking the time to read what I have to say. I hope my experiences may help shed some light on invisible/hidden disabilities and open a conversation. I think just having a basic knowledge and understanding could improve the support given to those with hidden/invisible disabilities and help them to feel more comfortable about sharing their own experiences."

If you would like to contribute to this work on invisible disabilities in some way, or if you know of any young people or parents/carers that would like to be involved, please contact Robin Tay (CAMHS Participation Worker): robin.tay@nhs.net