Let’s talk about money. Yes, the one thing most people avoid talking about.
I talk openly and honestly about all aspects of M.E and it’s knock on repercussions but have never fully addressed this aspect of having a chronic illness. So, here goes.
This blog is inspired by THIS YouTube video by Sophie Eggleton. It was posted back in 2015; I have only just discovered Sophie’s YouTube channel. I agree with everything Sophie says in the video but here is my own spin on the subject.
I have no money. There, I said it. Since leaving full time employment back in 2016, I have only had the brain power and energy to earn drips and drabs of cash. Just enough to pay my bills each month. If it wasn’t for the Bank of Mum and Dad, my situation would be even more dire than it is now. I am so grateful to them for the occasional bailout when an unexpected bill comes in. For 2 years, I have been too embarrassed to talk about my money problems, I have only confided in a couple of close friends. These are friends who, whilst not having M.E, are in similar financial situations for various reasons.
I am 41 and live with my parents. I hate having to admit that when it crops up in conversation. I am very lucky that I get on with my parents and am very grateful for the roof over my head. My shame comes from my hopes and dreams of my childhood. Never would I have dreamed that I would be living in my parent’s house at the grand old age of 41, childless (I never wanted any) and a spinster (ouch). My parents, like Sophie’s, are retired. They should be able to enjoy their hard-earned time together without having an extra mouth to feed. I simply can’t earn enough money to be able to afford my own place. I don’t have a boyfriend/husband to share bills with. House prices in Portsmouth are very expensive and, even without M.E, an average solo income would struggle to pay for housing and bills. Add M.E into the mix and it is a dire situation to be in. I own my own business (www.wordsangel.co.uk – shameless plug!), it’s still relatively new and still building. It is ticking over nicely and growing steadily. However, I am unable to put in the necessary 18 hour days to build it as much as I would like. Every time I go business networking I feel exhausted just listening to tales of breakfast networking, driving to conferences, working lunches, and evening networking sessions (that is all done on top of a working day). Most self-employed people don’t stop. Many would argue that working so hard is bad for health and well-being. True. However, it is necessary if you are a start-up business with one pair of hands and one brain. Self-employment allows my body to work in tune with my in-tray. I can set my own hours and work from my bed if necessary. It allows me to make the best of a bad situation.
When I walked away from Uni with a postgraduate degree, the world was my oyster. I am an ambitious person and believed that I would get myself a good job, save cash and work towards getting my own place and build a stable future for myself. M.E has completely stopped that from happening. I can’t hold down a full time job because my energy levels won’t allow it. Even part-time hours won’t work as the hours don’t fluctuate along with my energy levels and symptom flare ups. The pressure and guilt I place upon myself is immense. I always feel as if I have to justify my life and make excuses because people don’t understand my illness and subsequently, my situation.
Social media doesn’t help. I am sick and tired of looking scrolling through posts of friends who are buying houses, buying furniture for their new houses, getting excited about their upcoming holidays, etc. I keep comparing myself to fit and healthy people who are able to work hard and reap the benefits of putting in long days at work. I wish I could be one of those people. Instead, I regularly have to explain why I am in bed having a nap while they are at work slaving away to afford their lifestyle.
Maybe I/we need to stop feeling ashamed of our financial situation. We are skint, not because of laziness or poor money management, but because of a disability. We are making the best of circumstances that are out of our control. We should be proud of what we manage to do on a daily basis despite having a life-altering illness. Maybe one day, I’ll allow myself to believe that and stop beating myself up.
and Foggy (OBVIOUSLY)