Age 14: At 14 I did a work placement for a week that we had to do for school and I was so excited. Unfortunately, I only lasted 2 days with my first employer before they decided that they couldn’t deal with my tics anymore. I then moved to my dads work which didn’t go well either as my tics would yell “don’t buy it, it’s sh*t” which didn’t go down well.
Age 16: I sent my CV to quite a lot of employers but no one hired me.
Age 17: My tics were milder and hardly ever occurred at this time so I did a work placement in a specialist Autism school as part of my college course. I went in 2 days a week for 3 months. I loved it here and thrived until one of the students had Strep, I caught it, and went into a PANDAS/PANS flare that has now disabled me for 4 years.
Age 18: My tics were very severe at this time due to the infection I had which triggered them. I couldn’t return to the specialist Autism school and due to lockdown restrictions they couldn’t have me back anyway. I started a work placement at a PANDAS/PANS organisation which worked really well for me as I could work remotely, they were very understanding about my tics and OCD (of course) and I could work in a flexible way that worked for me. They gave me a list of tasks and I could choose which task to work on depending on how well I was feeling on each given day.
Age 19: I left the PANS PANDAS organisation shortly before my 19th birthday as I planned to go and set up my own business. I was trying to sell fidget boxes on Ebay. I set up an Instagram account to market it but nothing seemed to work and they weren’t selling. I tried to sell items individually then but it didn’t work as shipping costs were too high and I couldn’t make a profit. Eventually I had an explosion of POTS symptoms, muscle weakness, neck pain and other symptoms which made me too sick to work anyway so I had to give up on this buisiness.
One of my good friends at the time said they would set up a business with me. I was the designer / artist as part of this business. I spent hours a day whenever I could working on intricate digital designs, this was hard though due to my illness and took me much longer than it would take others. In March 2022 I was bedbound for 3 weeks and couldn’t even sit up for more than a couple of minutes. If I did sit up, I couldn’t breathe and was severely lightheaded...
~I ended up quitting the job because they would get angry with me for going too slow even though I was very sick and that is why everything took a long time - then they got angry at me for quitting and would still remind me of it around 2 years later to make me feel bad.
I tried earning money from my Youtube awareness videos which worked well for a while, I earnt almost £500 from this. However, most of it was money given from a 40 year old man who wanted to date me. My boyfriend at the time knew but him and my family didn’t mind because at least I was getting some kind of income. People would joke that he was my “sugar daddy” but eventually I refunded some of his payments and cut him off because it felt weird.
Age 20: At age 20 I would work on writing potery whenever I could. Due to being ill this was very sporadic, but after a while I put together poems I made since the age of 16 and made a poetry book out of them. I published this and hoped I could get some income from it and I earnt around £50 from it which I am very grateful for.
I then created an Autism workbook which I had actually started around the age of 18... The Autism workbook was hard to make due to my health issues, but I just did a little bit every couple of days. Eventually it was ready to be published. My main intention for this was obviously to support others in the Autism community, but I also hoped I would get some income from it to help pay for my Lyme treatment and groceries. I have got around £80ish for this so far which I am very grateful for. I then set up an Etsy shop to sell bracelets and clay creations I made but no one wanted them and the listing fee was too expensive so I had to take this down.
In conclusion, getting an income when you are chronically ill and disabled is hard, but I have always wanted to earn some of my own money. However, it seems virtually impossible to earn a proper income by yourself when you are too sick and disabled to work a normal job. To be classed as unfit to work by the government, you need 15 points... I have 39. Yet people still blame you and look down on you for being unable to work a typical job.
I get really upset when people treat disabled people like they CHOOSE not to work. We have often tried many things. I am super grateful for what I get and for how people support me, but I have to say my CV doesn't look very good now. 😬
I share this to show how hard it is to try to find work when you're chronically ill and disabled. People will blame us for not working and will act as if we haven't even tried. The Tory government acts as if working from home is the solution but I can tell you now that it doesn't work.
I am very open about my experiences trying to work and earn an income as a disabled person as I want to show how hard it is so people stop being judgemental. A lot of us HAVE tried as much as we can.