Humans of Scotland

Twimukye’s story – living with multiple conditions

"Living with long term conditions is challenging, don’t let anybody tell you it is easy"

This story is about: Long Term ConditionsDisabilitySensory

“I am a long- term survivor of disability and health conditions. I was born deaf with a severe speech impairment, this improved when I got my first hearing aid at University and it enabled me to distinguish words and sound.

I was diagnosed with multiple long-term conditions including severe depression many years ago. While all this was going on, I was a lone carer of 4 young children. This was an uphill struggle.

In 2012, I was diagnosed with diabetes and Retinitis Pigmentosa commonly known as ‘Usher Syndrome’ which affects both hearing and sight. Because of this condition, I will never be able to drive or navigate unfamiliar places in the dark without help. Luckily, I got support through Access to Work for special equipment in order to stay in my job. My employer was great in making reasonable adjustments.

I have always gone that extra mile to make sure my disabilities are not a barrier to what I want to achieve as a professional, an employee, as a mother and as a human being. I’ve never let disability be an obstacle in my way.

Ageing with long term health conditions and disability is no mean feat. I look young but my body feels ninety. I tell myself to keep going whatever the problem is. Surviving and living with long term conditions is challenging, don’t let anybody tell you it is easy. It is not. To me each day is different.

What works for me is the ability to listen to how my body feels and what I can do to address those challenges and seek support. Self-care and listening to your body is, to me, a fundamental core part of survival. I get a lot of support from my peers and my family.  Good and balanced relationships between health care professionals and service users is very vital.

My children have in many ways inspired me to live this fight and stay alive with long term health conditions. I have had a very supportive employer who understands my good and bad days. To any anyone out there, please don’t let the condition keep you down, it’s all about keeping hope alive and the desire to be who you are even when your health and disability may pull you back sometimes.”