By Natalie Houfe & daughter (she preferred to remain anonymous)
A difficult experience develops a new understanding and inspires a new charity.
Until physical health becomes a problem, we don’t tend to think about it. You don’t think about being able to stand, or worry about mobility and how to use crutches until you break your leg, do you? If you have an accident, you can re-evaluate what is important and necessary to get through the challenge, then adapt accordingly. It’s inconvenient but only short-term. But what if these health issues are chronic, and a totally different life path and journey is now on offer? That may change everything, dominate your daily routine, give you limitations and create an entirely new perspective.
Through my personal experience, I have developed a deeper understanding of hidden disabilities and how they can massively impact someone’s life. Both my daughter and I felt we had something to share with this new perspective.
This is how she wanted to share it: “Before my health hit, I was very active. At 13 I was doing 5 hours of dance a week after school, learning guitar, I was in Albemarle choir and youth theatre, I spent my lunchtimes at debate club, doing the school musical, language club and book club and in my form period I volunteered helping children learn how to read. Sure, I had a chronic headache, nosebleeds and felt dizzy a lot but I passed that off as being a teenager.
“One day, when I was 14, I woke up and I couldn’t move. I couldn’t even lift the hair off my face. Instead of calling for help, I laid there scared and waiting. When my body started to work again, I calmed down and went to school. From there my health started deteriorating. I began struggling to walk to and from school. I would lock myself in the bathroom at breaktime and scream and cry in pain, before going back to class. I dropped out of most of my extra-curriculars, and I accepted that I might be dying. Throughout all of this, I looked healthy and young, ‘pretty’ one doctor even remarked as a sign that I couldn’t be ill.
“Over the next couple of years, I gradually got worse, no longer able to stand in the shower, occasionally going blind or passing out, I crawled to the toilet. My heart raced at the slightest movement; I would sometimes forget how to use my fork or button my clothes and found chewing food exhausting. I still refused to admit that I was disabled.
“To me, the word disabled meant giving up and accepting limitations, it meant putting myself into an immovable box and closing possibilities of improvement. I had a lot of internalised ableism and very little understanding of what disability meant. I think most people are guilty of ignoring their body and trying to just push through it, but the rhetoric to ‘keep fighting’ can be incredibly damaging for your health.
“For me, disregarding my symptoms and ignoring my body caused my health to decline even further, until I was regularly collapsing. But test results always came back fine, and the doctors did not know what was wrong. There were so many symptoms, the doctors looked at us like we were hypochondriacs. Going private for more tests, still brought no answers and doctors continued to blame hormones and anxiety. There was little support for me, and I had to do most of the work independently, including figuring out my own condition.
“I was lucky to have a wonderful family and support network, but not everyone is so lucky. Although we were highly proactive it still took 7 years to finally get my diagnosis of Postural Orthostatic Tachycardia Syndrome (PoTS). Since receiving my diagnosis and accepting my illness, I have massively improved not only my physical health but also my mental health.”
We want to prevent this type of experience (which is concerningly common for people with PoTS) from repeating itself. Our charity aims to provide support for those living with hidden disabilities, initially with an emphasis on physical hidden disabilities but remaining inclusive to all. We also aim to educate and develop understanding around what disability means.
Disability within the workplace
One in five of the working age population were classed as disabled in a 2022 government study. It is then further estimated by the UK parliament that 70-80% of disabilities are invisible. Therefore, it is highly likely that you work alongside, live with, know friends or family who may experience disability. Many staff members and work colleagues will have hidden disabilities, some may need support, and would perhaps appreciate developing an awareness policy or training workshop. I have recently heard so many businesses struggling to employ staff. Well there are those not in work due to hidden disabilities, struggling to know how to get started or back to work. There are virtual opportunities now and a whole group of talented people wanting to feel valued, recognised and understand how they fit in society. We need to develop greater awareness and find alternative pathways to encourage, offer opportunities and inclusion within the workplace and higher education for those with disabilities.
Creating a community
“A large difficulty of being disabled can be isolation.” She explains: “If you are too ill to work, to join clubs or to even leave the house, the loneliness can be difficult to manage. Lots of us have now experienced how it feels to be trapped in our homes during lockdown and the physical and mental toll that took. But the continued confinement from being bed-ridden or physically unable to leave your house, can be hugely damaging. We want to create online activities for those unable to get out, but also make the process of getting out and socialising much more manageable and accessible.”
The charity will create, develop, and grow a friendly, safe, inclusive, social community for those affected by Hidden Disabilities in Hull and East Yorkshire. It will hold regular events, workshops, and classes. They will consist of a mixture of fun social, wellness, personal development, and expert advice events. A monthly social event will be organised at the Lexington Rooftop bar at the Doubletree Hilton Hull, who have been exceptionally supportive. We will of course be developing our social media network across different platforms along with a website.
Misunderstandings
Another key aspect to our charity is raising awareness and developing understanding. For example, it shouldn’t be a shock to see a wheelchair user stand up from their chair and it does not mean they are ‘faking it’. In fact, it is estimated that 1/3 of wheelchair users in the UK are ambulatory users, meaning they can sometimes walk without support. Many chronic illnesses and invisible disabilities are inconsistent, varying from good days to intolerable flare ups. Sometimes visible aids are needed to give support, sometimes they are not. People with invisible disabilities can be prevented from using aids to help them (like disabled seating) because they don’t ‘look’ disabled enough. Explaining misunderstandings like these and educating people can help prevent many difficult and confrontational conversations that disabled people experience frequently.
“We are striving to create a charity that listens to disabled voices and finds the relevant ways in which we can support and fulfil those needs. We are looking to build a sub-group consisting of spokespeople from different types of hidden disabilities. This group will share ideas and opinions, considering what they want, what they feel is missing and how we can best provide for them.”
Please get in touch if you are interested in getting involved.
Meet the Team
Myself, Natalie Houfe: charity founder, Pool Heat director, event organiser, and former Women in Business chair.
Carol Ideson: Bid writing, funding and training specialist for education and charity sectors; overall winner of WiB WoA Awards 2022.
Bethany Headland: disabled student providing insight from an end-user perspective.
Karen Newton: Qualified nurse with an MBA, experienced private hospital director and current national operations director; current WiB chair.
Our charity ball
We are holding a ball on October 27, 2023, at the DoubleTree Hilton in Hull to launch the charity! Each year we’ll focus on a different hidden disability. This year, we’re raising awareness for PoTS. Our guest speaker is Dr Sanjay Gupta from York Cardiology, a regional expert on the subject of PoTS/dysautonomia. He is a groundbreaking cardiologist and heart specialist.
Dr Gupta explains: “Postural Orthostatic Syndrome, or POTS as it is better known, is an incredibly common chronic medical condition. It’s often invisible to the outsider but very debilitating for the sufferer. Symptoms affect virtually every system of the body. Patients who were young and healthy beforehand often spend an average of seven years, sometimes in a wheelchair, seeking professionals who can diagnose them. Once diagnosed, they can significantly improve through lifestyle modifications, physiotherapy, and medications. Increased public awareness is crucial in helping the as-yet-undiagnosed get the help and care they need to reclaim their lives.”
For more information, you can visit Dr Sanjay Gupta’s website or look for “POTS” on YouTube.
Our inspirational speaker, Chronically Jenni, is a ‘Positive Role Model Award for Disability’ finalist from the National Diversity Awards. She will share her PoTS journey and deepen our understanding of the condition.
Get involved
Follow the link to book tickets or find more details on the ‘Hidden Disabilities Charity Launch & Gala Dinner‘.
If you’d like to get involved, book a table, or become a sponsor, it will be greatly appreciated. Email queries to natalie@hiddendisabilities.org.uk or find us on LinkedIn: Hidden Disabilities Charity.
