Understanding disability matters
Dealing with a life changing diagnosis
Being diagnosed with an illness can be hard at any stage in your life. Finding out that you’re diagnosed with a lifelong or terminal illness which is visually unseen makes it even more of a challenge in everyday life.
Workplaces often don’t understand the needs of people who require special assistance at work. In most cases businesses are ill prepared to take on a person with any form of disability- seen or unseen. Trying to get your boss to take ownership and make vital changes in the workplace to assist you in order to allow you to work in a safe environment can be challenging. Most just won’t do it even though they have a legal obligation to do so.
However, what happens before you’ve even secured a job? When you’re trying to apply for jobs or attending interviews? It can be quite intimidating to start making demands at the outset about certain prerequisites to accommodate you both at the interview stage and/or later at work should you be successful. Many employers may just decide to hire the other “guy” to avoid the hassle and costs of employing you. Again such practices are illegal and any employer found deliberately doing so could face legal action.
There’s occasions where you avoid telling your new employer altogether about your medical condition to avoid them rejecting you at the interview stage. I’ve been to many interviews where I didn’t declare my medical condition out of fear that it may scare them. Looking back, it was the most stupid thing I could have done! You should always let your new employer know of anything which may pose a problem during your interview stage.
When it comes to finding the right partner in life that’s challenging enough, trying to find one when you suffer from an illness can be even more difficult. You may shy away from telling the person you love of your medical condition in the fear that it may scare them away. It’s never easy to open up to a new person, but its vitally important that you do let them know of your health concerns as soon as possible. Be honest and open with them. If you explain your medical condition to them early on you may find they may respect you for your courage and honesty.
At the age of 25, I was diagnosed with epilepsy. I was told I’d have to take medications for the rest of my life to control any future epileptic fits. I remember when the doctor told me, my mother broke down into tears. It was harder watching her accepting the news of my condition than it was to hear it from the doctor. A part of me sank, I felt like I’d become useless. While trying to cheer my mother up and give her (what felt like at the time) false hope, I actually felt inside that I’d somehow let my parents down. Being diagnosed with epilepsy made me feel as if I’d become a burden on my parents in their old age.
Ten years on, looking back I realise what a difficult period me and my family went through. Everything in my life had to change, from my diet to my sleep and from my social life to my private life- everything changed! I suffered sleep deprivation, insomnia, depression, hallucinations, up to five epileptic attacks a day, years of stress and fatigue and weight loss, excessive breathing problems, hair loss, a speech impediment and memory problems. I had to have years of private and public physiatric sessions to overcome the many side effects related to epilepsy. I got to a stage where I just stopped telling doctors how I felt to avoid an increase in medication dosage. I had to fight to get it decreased as I felt the medications were no longer helping me.
Today, I know what my limits are and how far I can stretch outwards without harming myself. I still play the aloof sometimes and do the odd crazy thing, I’ll pay the price for it later always with my health. I try to live life like I never had epilepsy, deep down however I know I have to accept that I do have it and things have changed. There’s many things I can no longer do – It hurts to have your youth and your independence taken away from you so cheaply.
I’ve had to accept that there are many side effects of having epilepsy. None of them irreversible, and that things will only further deteriorate as I get older- like my memory and speech impediment. When I was first diagnosed with epilepsy at the age of 25 I was told I could lead a normal life and do everything as I was currently doing. As I walked out the doctor handed me a sheet of all the things I now had to avoid if I wanted to stay epilepsy free. That day I learnt- That there’s always a catch somewhere in life.
The best way to give back to your medical condition is by fighting back. Don’t let your illness overcome you. Read about your medical condition, push your doctor to go beyond the textbook theories, try alternative medical practices, do yoga- Most of all live your life!
I’m a strong supporter and patron for a number of charitable organisations in the UK that advocate for better understanding of epilepsy and other neuro surgical related medical conditions. Locally for my local constituency Labour Party, I work closely with the Disability Inclusions Officer to highlight the need for organisations to become more accessible and disabled friendly environments.