Disability Mask
To hide your disability or not to hide?
I have worn a disability mask for most of my life due to shame. I did not want to be treated any differently. I did not like the focus on the things I could not do.
I was born with a rare genetic bone disorder. I first knew something ‘wasn't right’ with me was around aged 6yrs old. I attended a dance class. The dance instructor criticised me for having a ‘square back’. I had not noticed. But I did know that my body did not move like everybody else in the room, and it wasn’t from the want of trying.
My sibling was the star of every dance class and show. Everyone assumed I would be like her and have her dance skill and ability. They were wrong. I wouldn’t say I liked dance class. I wished every Saturday I could have stayed at home reading a book. Instead, I was teased by the instructor, my sibling and my classmates because I could not perform a simple bridge even after months of trying day and night.
At the Christmas show, I was ‘that girl’, the one at the side smacking the tambourine and not allowed to dance on the stage because I was told I would lower the show’s standard.
I left dance class shortly afterward.
Growing up, I always felt different and defective. Felt lesser than others and less worthy of praise, love, and happiness.
Why do we [disabled people] feel like this? … Nurture vs Nature? Society? People? Psychology? Experiences?
I had undergone several major open heart operations before I was 13 years old. I had yet to discover the extent my faulty genes would affect my health, my body, and my mental well-being.
I was 18 years old and at university when my dodgy DNA began to unfold. My health declined (as expected with the increase in alcohol, decrease in sustainable food, and reduction in sleep!). I was diagnosed shortly afterward, resulting in me taking a year out of university.
I was diagnosed with a rare genetic disease condition while studying for a nursing degree with Klippel-Feil Syndrome (KFS).
Klippel Feil syndrome — About the Disease — Genetic and Rare Diseases Information Center (nih.gov)
I met with many clinicians and doctors, but no KFS specialist exists in the UK. I had to become a specialist in my condition. I had to know more than the doctors and medics to help myself. I continued to train as a nurse. I qualified a couple of years later, and whilst I cannot be a physical hands-on clinical nurse, I have a unique perspective as a patient and clinician.
While my condition is classed as a ‘Bone Disorder,’ it is not as straightforward. It is also registered under the ‘National Organisation for Rare Diseases’ (NORD) and ‘Genetic and Rare Diseases’ (GARD).
I have a low hairline (closer to the back of the head), a short neck, and a limited range of movement with the neck. However, other symptoms associated can present, including:
- Torticollis (crooked neck with head and neck tipped to opposite sides)*
- Scoliosis (a curve in the spine due to fusions; approximately 30% of those with KFS have a skeletal abnormality)*
- Spina bifida (when the neural tube that houses the spinal cord does not fully close in utereo)
- Webbed fingers
- Abnormal/underdeveloped reproductive organs*
- A cleft palate (when the roof of the mouth has an opening leading up to the nose; this affects approximately 17% of those with KFS)
- Hearing issues or deafness due to structural problems in the ear’s inner or outer parts; affect 25% to 50% of those with KFS.
- Pain such as headaches or neck pain*
- Respiratory issues*
- Problems with the structure of the ribs*
- Abnormality of the kidneys*
- Abnormality of the heart*
- Sprengel deformity (one or both shoulder blades are underdeveloped and are located higher up on the back, causing shoulder weakness)*
*Unfortunately, I suffer from all of the above plus many more conditions, diseases, and deformities, all closely associated with KFS.
So, I guess that I can be labeled as disabled. I needed to accept myself.
I spent years hiding it [my disabilities]. In a way, I was denying my very own existence. I see that now. I thought that hiding my disabilities would enable me to be more accepted. I never was. I wanted to live an entire life without disclosing my conditions.
I have spent every minute of every day of my life here on Earth in pain. You would not know it. I have perfected hiding it. Whenever the pain became unbearable, I would chant, “Nellie the elephant packed her bag and said goodbye to the circus, off she went with a trump trump trump”. I sing this in my head over and over and over again.
Genuinely, I am shocked. I have just realised the gravity of what I have been chanting for four decades: I am a fat heavy animal. I am packing my bags and leaving the circus of ‘misfits’ and abnormal freaks on display.
The last time I repeatedly sang that chant in my head was when walking home from the train station home YESTERDAY. It is a 15-minute walk. But after only a minute, I was in pain. The pain slithers across and up my body with every step. I have to continue. I have to fight it. I have to win. Several parts of my spine felt the playground twist of a Chinese burn until my entire back became ablaze with fire and flames. But I continue walking. I must win. “Nellie the elephant packed her bag and said goodbye to the circus, off she went with a trump trump trump”…
I have tried many different methods, theories, and self-help; however, mindfulness, breathing in for 4 seconds, holding my breath in for 7 seconds, and breathing out for 8 seconds. I concentrate only and solely on breathing and counting. It helps with breakthroughs in pain. This resulted from my research work as a graduate nursing student in the 90s. I developed a research and teaching model whilst working at my local hospital. I discovered that when patients are distracted from the procedure or element of care, they less likely were to have a reaction or high pain. I began trialing my theory on my ward, and it then started discharging patients earlier (reducing their length of stay in the hospital). This was then developed into a training session for other wards and rolled out throughout the hospital. I felt very proud.
It was my inner secret; it was what I did & do every single day. I distracted myself, visualised beaches, breathed, and distracted myself from my pain levels. I knew it worked. Now, we are educated, and there is a lot of ‘buzz’ around mental health, well-being, mindfulness, meditation, and healing.
I have now learned acceptance.
Acceptance that I have health problems and past medical history have physical limitations, look different, and move unusually and awkwardly. I am not normal, but who is? :-)
So,
- I need to change my mantra! If you have any suggestions, please comment or message me!
- I need to be more honest about my health and disabilities to myself and those around me.
- I must stop pushing my body beyond breaking point to appear ‘normal.’
- I need to love and appreciate what I have been given instead of what I have not.
- Ask for help more. I’d previously felt it was a weakness, but now I see it as strengthening me to physically and mentally not become exhausted.
It’s not just me. In 2021 following the Covid pandemic, the
published an article,“The workers keeping their disabilities hidden.”
In November 2022, my condition worsened, and I was forced to use a wheelchair. I could no longer hide. My disability was visually obvious. It had shiny waving metal and great big wheels and bumped into most items, people, and objects. Most of all, the more I became visibly disabled, the more invisible I became.
The first dilemma was an accessible toilet in a local garden centre. The door opened outwards, opening it and manoeuvring the wheelchair in was exceptionally difficult. Then once inside, I could not turn the wheelchair as there was not enough space. I could not even line my wheelchair up next to the toilet to transfer. Then, I could not open the door or turn around, so I had to back out of the bathroom, hoping people would be kind enough to stop, help, or acknowledge me. Nope. I was tutted at, signed at, and hurried along with no thought to how difficult it was for me. Just felt I was an inconvenience to them.
The
article in 2018 portrayed what occurred to me in 2022.I no longer hide behind the mask of my disabilities.
I embrace them. Talk about them – we cannot improve ignorance if we don’t challenge people’s and organisations’ perceptions of those with hidden and unbidden disabilities.
#Disability @disabilitystories @DisabilityStories #Memoir
