I am chronically ill; I worked and paid in to the system for years before becoming too poorly to work. The condition I have causes crippling fatigue; it’s not tiredness, it’s debilitating, life limiting fatigue.
The recent announcement of the cost of living help for low income families has brought out the worst in people and frankly, makes me feel worthless. I’ve stopped reading the comments sections in the media as it makes me feel like trash.
From family and friends, I’ve had remarks such as: “I work hard for what I’ve got and there’s you being paid to watch TV”. Said in a lighthearted way of course 
“It’s wrong how hard working people get nothing and those that don’t, get it all handed to them. Oh but I’m not talking about you.” Yes, you are.
“I know someone who has 4 missing limbs and they still have a job, why can’t you work?”. When I’ve tried to explain that fatigue can be a huge barrier to work, I get told about another inspirational person and if I really wanted to, I could.
My own sister threatened to report me for benefit fraud (jokingly of course)
. I told her to go ahead as I have nothing to hide.
Family call me the ‘benefit expert’ and it’s so hurtful. I have never told them that I receive benefits but they assume and bring it up every time I see them.
I’ve lost any chance of a career and I spend my days in pain and exhausted. I dread the week as I’m so bored being stuck at home. I do also try to live life as I have children but heaven forbid if I take them on a day out, because it means I’m not truly unwell (they don’t understand the suffering I go through after).
I told my other sister I was being referred for more testing and she rolled her eyes and said “what’s wrong with you now?”. I rarely talk about my illness because family don’t understand it and are very unsupportive. I had to hold back tears and make an excuse to leave.
I cringe when doctors ask me about my occupation and I’m so embarrassed to say I don’t work. I hate this. I hate every second of it and the attitudes of people make it worse.
I’ve had to fight the system repeatedly in spite of medical evidence to get financial support. The fear of it being removed every few years and wondering how I will survive in old age keeps me awake at night.
Do people really believe people choose to live with this worry and the shame that comes with it? I feel so disheartened and upset today.