Chronic Illness, Welfare and Trolls… Oh My!

Recently an online friend of mine shared a harrowing experience on her blog (http://writehanded.wordpress.com/2014/03/13/fuck-winz-yes-i-said-it/). My friend has a chronic illness and right now is unable to work to support herself financially and so has to deal with WINZ (NZ’s social welfare dept.) on a regular basis. It has not gone well thus far. She has handled the situation with grace, tenacity and bravery. Unsurprisingly, my friend’s blogpost inspired a number of terrible people (trolls) to comment on her situation. It’s hard enough dealing with WINZ. Harder still is coping with and processing the pure bile that spews forth from those who refuse to acknowledge any difficulty and disadvantage that a person might have in this life and that society is responsible for helping those people who need it most.

Don’t Read The Comments

That’s very good advice that should be applied to almost anything you read online but in this case it was important to read the stories of others who had been through similar experiences and were frustrated, struggling, impoverished and feeling helpless and hopeless.

That my friend’s blogpost resonated with so many is a pretty bad indictment of our welfare system. The trolls were outnumbered by these stories but unfortunately it tends to be the trolls that stick out like a pustular boil on a sore thumb. Don’t read the comments: Yes. Fair enough in most situations. When you want to affect change though, it’s important to know what people are thinking. Societal attitudes are part of the problem and can also be a part of the solution. That’s what social change is all about.

If You Can Use [Insert Social Media Tool Here] You Can Work

People with chronic illnesses can feel marginalised to the point of invisibility, especially if we are unable to work. Blogging and social media is one of the ways in which we can feel empowered. We can tell our stories in our own words and in our own time. We can write when we feel up to it physically and psychologically. Crucially, we can get feedback, suggestions, guidance and support from those who read what we write. For many of us, it is the first time we have been able to share our innermost thoughts in any kind of coherent way and it can be the first step to discussing issues that affect us in the real world. We don’t have the time or the energy to talk through everything that has an impact on us in our day to day lives and there might not be anybody there to listen if we did. Blogging is a lifeline for some of us. It can make us feel supported and less alone. Think about that next time you make a thoughtless comment that we should just stop whining, get a job and get on with our lives.

There are those who seem to think that if we can tweet or use Facebook or blog, we can work. It’s true that these things can take up a lot of time. I would consider myself a heavy social media user. Before the advent of social media people might have said: If you can walk the dog, you can work. If you can go to the pictures, you can work. If you can sit in a cafe and drink tea, you can work. There is, expressed here between the lines, the disturbing notion that those who are unable to work should sit at home and watch TV all day, like prisoners in their own home. Though perhaps if you can watch TV, you can work. I don’t know. Those who take this attitude, apart from being downright mean, misunderstand completely how chronic illness works.

Most people who live with chronic illness have their good and bad days. On a good day, you might be able to get out and see friends. You might be able to walk the dog. You might be able to sit in a picture theatre for a couple of hours. You might on very good days be able to do a full day’s work. Some people can experience quite long stretches where they could potentially work part time or even full time. The thing with chronic illness though is you don’t know when you will be at your worst again. You don’t know when you are going to have to spend the day in bed because you’re in too much pain to get up, let alone go outside. You don’t know when you might get an infection or some other illness related to your condition that might put you into hospital and out of action for a long while. That’s why when you tell us that if we can use social media, we can work, it rather gets on our wick. Please stop that.

You’re Just Lazy

Those of us who have chronic illnesses internalise the idea that if we are not turning up to a place of work at least five days a week, we must be lazy. I felt this myself for many years. After receiving my first class honours degree, I started looking for jobs. I worked part time for a number of years in a job I loved. I did other freelance work, too and I volunteered. I wasn’t busy enough. Everyone around me was busy and talked all the time about how busy they were. I felt so much guilt that all of my time was not occupied by work and I also felt left out. I wanted so badly to join in. I’ve always been extremely prone to a sort of impenetrable existential boredom so I was looking for constant distraction from that, too. At around this time I started to get sick a lot with potentially life threatening infections and my body was starting to show the first signs of osteoarthritis, too. I was 24. You can age a lot faster when you have a physical disability like spina bifida. A chronic illness might age you as well.

It wasn’t until I tried for a career in teaching that I realised I was never going to be able to work in a ‘normal’ job. This was the turning point for me. I knew I wasn’t being lazy. I had to accept the very real possibility that I might kill myself trying to work. For some, it’s not just a case of finding the right job. We need to accept that some of us are incapable of holding down a job and that the consequences of trying to do so may include making a person sicker. We need to accept that forcing a person into work may indeed, for a small number of people, lead to death. That’s not being dramatic. It so nearly happened to me that I question every day how I’m still here. I was so sure that I was going to die. I had been on a full time placement for three weeks. Three weeks working full time is how long it took for me to nearly lose my life in pursuit of a career. So next time you feel the urge to tell someone with a chronic illness to get off their lazy behind and get a job, have a bit of a think about what effect that might have on a person.

If you stopped feeling so sorry for yourself and put that energy into work, you could get a job

This is often said to people who have been brave enough to share that being chronically ill has led to depression or that depression is a chronic illness for them. Well, they are right about one thing: depression takes a lot out of you. It takes a lot of energy to be so depressed that you can’t leave the house. Only the most ignorant person with their head firmly in the sand doesn’t know now that depression is not about feeling sorry for yourself.

Often people assume that those of us who are unable to work are sitting around feeling sorry for ourselves. Actually, many of us are good and productive members of our community. Some of us volunteer, we support our friends, we are valued family members, we have hobbies and interests and we care about our communities. We do these things because everybody needs meaning in their lives. Rest assured, when you tell us to get over it and stop feeling sorry for ourselves, you are part of the problem, not the solution.

What’s your problem? What’s wrong with you? What’s your disability/impairment/condition?

Just a quick tip: Only the last version of what is essentially the same question is acceptable and only when it’s relevant to the conversation. Even then it’s up to the person just how they want to answer. In the context of employment, I and others with disabilities and/or chronic illness get very used to followup questions about how our illness or disability might affect our ability to work, like it’s really anybody’s business. We are very aware that these questions are asked so that you can assess our suitability for employment and judge us accordingly.

Most of us experience a long period of utter devastation, sometimes even leading to depression and anxiety, as we go through the long process of coming to grips with the fact that we can’t hold down a job because our health will either be compromised severely if we do, or our health will get in the way of being able to do our job; often it’s a combination of the two. Many of us have tried over and over again to work in various different jobs and each time it doesn’t work out, our self esteem, self worth, in fact our entire sense of self, takes a battering. Eventually some of us get to a place where we are ok with who we are and we accept our new circumstances, though many of us would still give anything to change them. You should know, it’s not up to you to decide how our chronic illness or disability affects our ability to be employed. Through experience, we have become pretty good at judging that for ourselves, thanks very much.

Pretend Like You’re A Good Person

We are not idiots. We know some of you are judging us. We know you will probably use our stories against us. We know other things too: We know that we don’t have to justify ourselves to anybody. We know what we are capable of. We know that our stories will help some to find strength and others to discover a way through. We are living our lives in the best way we know how. We will not apologise to anybody for having to accept support from the government or anybody else. It’s not our fault. We didn’t ask for this. If we could change things, we would but many of us can’t. If you are judging us, you are changing nothing and you are helping nobody. You can and should change your attitude and your thinking. Pretend like you’re a good person for a bit. You never know, it might stick.

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5 responses to “Chronic Illness, Welfare and Trolls… Oh My!

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