2015 came and went. On the whole, it was a good year. I was invited to a reception at The House of Lords to say thank you for my fundraising efforts which was cool. I bought my first ‘walking’ stick to get me thorough a couple of evenings out with my shonky legs (it was actually a ‘shooting’ stick from the local country store as I wasn’t quite ready for the real deal but I love it!). I picked up another retail consultancy job and life was pretty good! I had work, I had some fun and I was finding the more that people believed in me and my abilities, the more I could bury my MS monster and get on with my life. The people I was consulting for had no idea I had MS and for the first time in a long time, I was starting to feel like a ‘normal’ person. And then the now legendary 2016 arrived….
My consultancy job came to an end and work dried up. My little MS bast@rd was there, waiting in the wings, ready to take full advantage of the situation. The lead ankle weights and cloak of wet sheep returned. My mood was up and down like a yo-yo on a rollercoaster in a hurricane. My husband deserved a medal. Erratic self-employment was doing my head in, I needed a job. God, how I craved some routine! And I needed to feel… well, I just needed to feel needed.
I scoured the papers and local job sites for work. There wasn’t much about that was suitable but I found a couple of things and started filling in the forms. Within a few weeks, I got an interview! The role was perfect, it might as well have had my name as a job title. I was so excited! Full of confidence, I went to the interview. Lovely people, great prospects and a chance to finally get my life back on track. It was a full-time role (not ideal but what the hell) and they needed to know of any prior engagements that I had booked. I told them that I needed to take every fourth Wednesday off. ‘Why?’ they asked. Well I wasn’t going to lie so I explained that I needed a drug infusion every 4 weeks for a medical condition. Their perplexed expressions meant it was just going to be easier for me to tell them I had MS. They seemed cool with it and said they already employed people with disabilities, no biggie.
I went home, confident that the job was mine but hang on a minute, they said they employ people with ‘disabilities’. But I’m not disabled, am I? Back to the Google machine…. WTF?! Excerpt from the gov.uk website giving the definition of disability:
“..you automatically meet the disability definition under the Equality Act 2010 from the day you’re diagnosed with HIV infection, cancer or multiple sclerosis.”
Oh crap. That means I lied on the job application form when it asks if you are disabled. Never mind, I explained it at interview so they have the facts. All will be well. They called 3 weeks later to let me know I hadn’t got the job. “Would you be kind enough to tell me why” I enquired. “There was someone with more experience than you, that’s all”. I nearly yelled ‘Bollocks’ at that point but instead I asked “Will you let me know if anything else suitable comes up?”. The reply was clipped, short and to the point “No, there won’t be anything else”.
I was utterly devastated. Not only had I failed to get a job that, at any other point in my life, I could have won standing on my head dressed as a pirate but I had also found out I was now registered disabled. I had a nasty feeling that this was going to make getting a job very difficult. If I’m disabled, I should disclose it on an application form but when I rock up to an interview with no obvious outward signs of disability, it will always beg the question “so what is the nature of your disability?”. That and the fact I will always need every fourth Wednesday off means that I cannot get out of an interview without saying the words “I have Multiple Sclerosis”. And, understandably, most potential future employers will be scared by these words because they probably have no understanding of it.
Well that’s it then, I’m f***ed!! Jesus, if only I’d known all this before I resigned from my old job – I would have given that decision a lot more thought. Even though I could no longer do my old job in its entirety, I would have had my arse covered by the Disability Section of The Equality Act so that I could carry on in some capacity. But no, big head over here decides to resign because a) she doesn’t know at this point that she is now disabled and b) she believes she can take on the world, even with MS, and breeze into any job or business opportunity she wants to. Because that’s what she’s always done! This whole episode was a MASSIVE wake up call for me.
Finding out that you are now registered disabled makes your head explode. So many questions, not many answers:
- If MS is listed next to Cancer and HIV as one of only 3 progressive illnesses that automatically register you disabled, that’s pretty serious! And a bit scary. MS was always going to be a bit scary but this just compounded it.
- Where’s the certificate that says ‘Congratulations, you are now officially disabled!’ No, seriously, someone should be obliged to tell you that at the point of diagnosis and the implications it realistically has on your life, particularly your working life. You would then at least know what rights and responsibilities you and your employer have from that moment on.
- The word ‘Disabled’. Literally translates to me, and countless other people, as ‘Not Able’. What a pile of poo. I don’t like it, it’s a rubbish word and a complete misnomer. The ‘disabled’ people I know have bags more ability, grit and determination than many ‘able bodied’ people I have met. They have capability not disability and they have it in spades.
Do I sound a bit angry? Well I was! And with good reason. I had been thrown into a world I knew nothing about, with no map, no sat nav, no practical face to face support. I was completely lost and every door I knocked on for work either dangled a carrot on a stick or shut the door in my face.
Understandably, I spent the next few months at a very low ebb. Every time someone came to the door and asked ‘how are you?”, I burst into tears. For the first time in my life I was unemployed. I felt like I had been thrown on the scrapheap and, as a result, the fatigue and leg pain were killing me. I also had no money coming in. My flare ups were getting worse and to be honest, I felt like I couldn’t hold a job down even if someone would be kind enough to give one to me. I couldn’t even apply for one in this state. My MS nurse suggested I go to my GP for depression. I didn’t. That would just mean more pills and another conversation with someone else who would make me cry.
Gosh, I sound like a right misery guts don’t I?! I’m not at all, 2016 was just a bit rubbish. But listen, I don’t want sympathy, pity or a sick note which effectively renders me medically retired. I don’t want to claim income support or whatever the hell it’s called now. All I want is meaningful employment. Working makes me happy, it gives me a purpose. It stops me thinking about MS all day long. It pays me money too and that would take the pressure off my incredible husband who now feels he has to work as many hours as humanly possible to make up the shortfall. But most of all, a happy busy mind is, for me, better than any drug for keeping my symptoms at bay. I can’t cure MS with work, that’s ridiculous, but the positivity of a sense of purpose goes a long way.
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