It took a while for me to accept that I had a recognised disability; I was defiant and determined to keep on going and to not let Parkinson’s define or hinder me. However, the reality is that I cannot do a lot of the things that I used to do, and every day brings challenges that I previously never had to contend with, just making it through each day is a lot of work. Parkinson’s has taken a lot of things from me that I used to take for granted.
Having a chronic illness is also very expensive; people with disabilities are twice as likely to live in poverty, and this is often a consequence of their disability. Parkinson’s costs me a lot of money; I had to employ a cleaner as I don’t have enough energy to do housework, I pay for healthy plant-based meals to be delivered during the working week as I am too tired to cook after a day at work, I gave up a management position in my job to try to reduce my workload, I spend a lot of money on holistic therapies that are not available on the NHS, and just last week I spent £300 on personalised insoles that will help me to walk more easily. As a teacher, I am on a good wage, but it has its limits, and so, I decided to apply for the PIP benefit. I have contributed a lot of tax over the years and hoped that now that I needed support, that I would get something back; but I was wrong! I have applied twice and been turned down both times. I am disabled but apparently not disabled enough; it was ’just a limp’. I felt like a fraud who did not have the right to claim for a disability. Whilst I am incredibly grateful for the things that I can still do, these words undermined what I go through each day.
I want to stress that this is not a blog about who deserves PIP, nor am I looking pity or praise, but it is an invitation to reflect on how we look at disability; it can be both apparent and non-apparent.
People might just see a limp but there is so much more going on beneath the surface, and I know that I speak for others with chronic illnesses. I am not discussing these symptoms in order to complain about my lot, I merely want to raise awareness of the ‘invisible’ side of disability. It takes so much for me to get out of the house each morning; due to fatigue and exhaustion I must take breaks as I get ready. I used to be extremely punctual, now I operate on ‘Parkinson’s time’, and I am often late. I need to budget energy and decide where to use it. I have balance issues, I am extremely sensitive to over-stimulation and crowds, I can’t make plans with certainty, I have brain-fog, I also have limited movement, extreme anxiety, low mood and insomnia. The list could go on… Those of us with chronic illnesses are often dealing with old age issues whilst we are still relatively young, I know that I often feel like I have the body of a much older lady.
Each person with a chronic illness will have their own complex needs but will often receive a sceptical response when explaining invisible symptoms. We are often made to feel like a hassle and a burden and that we are taking up space. I however, have stopped living apologetically and I now ask for what I need. I have gone from being someone who tried to hide her disability to someone who feels compelled to raise awareness and to be an advocate for the chronic illness community.
Remember that anyone can become disabled at any time, and we never know when we will be diagnosed with a serious illness. I will continue to confront the status quo and I would implore you to do the same…