When I finally managed to make it to university and started interacting with people who were not my immediate family, it was painfully obvious that I couldn’t hear what they were saying and that, when it came to conversation, I had pretty much been operating on guesswork for quite a while.
I am not profoundly deaf and, obviously, can hear more with my hearing aids in, although they only make things louder, not clearer. I can’t hear any high-pitched sounds and, with my hearing aids in, I only properly catch one word in three.
When I was 17, I was diagnosed with hereditary neuropathy with liability to pressure palsies (HNPP), which results in extreme palsy in my arms as well as patches of skin being numb, difficulty gripping things, weakness in limbs and severe fatigue. I also have mixed connective tissue disorder (MCTD), an autoimmune disease in which the body’s defence system attacks itself. MCTD causes chronic joint pain, muscle inflammation, hypermobility and pulmonary hypertension alongside a long list of other symptoms.
My disabilities can hamper everything I do, but they are often invisible, although I don’t think the days I have to use a wheelchair or wrist splints make them visible – they are just my aids.
I often have to explain myself when strangers think I am just being difficult. I get scoffed at in the street when I don’t hear someone behind me or I walk into them because they are on my blind slide. I have been called out loudly by non-disabled people for using disabled toilets or parking spaces, challenged for being a picky eater when I cannot eat an ingredient in their food and yelled at for being inconsiderate. It doesn’t matter when I explain that I am not just dozy or silly, but have a disability, because they have already worked themselves up into a self-righteous rage and nothing I can say will stop that.
It also hurts to have to explain painful, long and complicated reasons behind injuries when people expect a light-hearted story. “What happened to your hand? Accident while out on the town?”