People love to judge those on benefits. If there's nothing visibly wrong with you, you're branded a scrounger, and people look down their noses at you. Park in a disabled bay and get out without a wheelchair or massive limp, and you're stared and tutted at. It doesn't help with all the programmes on tv lately where it shows people on various benefits, proud of what they get from the government rather than working to earn a decent wage. And tonnes of newspaper articles that show families being given more than enough to live on, and being given huge houses with several bedrooms, and enough money to buy their children designer brands. And you also get the benefit frauds who lie about illnesses and injuries in order to get disability benefits just because they don't want to work. This all means that people with real illnesses, especially the 'invisible' kind, in which CF largely is, severely struggle to get what they deserve.
Even before the new guidelines with the change from DLA to PIP, it was (and still can be with other benefits such as ESA) incredibly difficult to fill out the forms in a way that showed just how bad your illness can restrict you at times. I know several people who would qualify for either ESA, higher rate DLA (or both, really) and either haven't applied because they're worried the stress that they'd go through trying claim what they need, or have been refused the rate they do qualify for, purely because the people who decide are heavily uneducated in our illness(es).
Many people with CF have been told they're fit to work and don't qualify for benefits, because we don't 'look ill'. You don't see the effort it takes to get up in the morning, after a night full of coughing fits. You don't see how long we spend taking tablets, doing nebulisers, taking inhalers and doing physio every day, just to try and stay stable. All the painkillers and paracetamol taken for various headaches, temperatures and joint and lung pain. The supplements taken to try and gain enough weight due to our high dietary requirements. You don't see the time spent in hospitals for appointments and admissions, and the various clinical tests we have to undertake just so the hospital can monitor our health. The medication and equipment we drag around all day. The IV and oral antibiotics we take, antisickness, painkillers, vitamins, enzymes, various other meds for things such as reflux, liver disease, bone thinning, CF related arthritis etc. And on top of all that for some, insulin, overnight feeding or supplementary oxygen.
On a bad day, I can hardly get out of bed. Barely enough energy to get to the bathroom two doors down. Having parents, sisters or my long suffering yet never complaining boyfriend bring up medication, cups of tea and food, because I know that I just can't face going down stairs and then all the way back up again. Or even when I'm in hospital and attached to drips and oxygen, with back pain, temperatures and O2 headaches that feel like someone is trying to crack open your head with a meat cleaver. But once I'm back out of hospital, you don't see all that. I'm not perfectly healthy. I never was and never will be. At the moment, I'm obviously too well to need to consider transplant, but I'm too ill to be able to be a normal 22 year old, and definitely too ill to work. My lung function in the past year has repeatedly jumped between 35% and 60%. I get out of breath walking ridiculous distances and usually have to get carried up a flight of stairs if there's too many or there's no alternative. I use wheelchairs when I can't face walking around, like in shopping centres. My back hurts when I walk, when I stand around or when I cough when standing to the point where I have to sit down. I don't need oxygen much but have been admitted for it twice in the last year, out of three admissions. I'm on IVs every 2 weeks to 3 months, for either 2 or 3 weeks at a time, and we've started to add a third antibiotic in instead of just the two. And on top of all that, my hearing is fucked beyond repair to where I rely almost totally on lipreading. I can't understand anyone without it, I can't hear a thing without my hearing aids, this is all due to a mixture of hearing loss and nerve damage from antibiotics that I know I wouldn't be here without. I can't hear on the phone, I can't watch tv without subtitles, and I can't understand people without them speaking clearly and not mumbling. I even struggle to understand some of my closest friends and family because my hearing is that messed up.
But if you look at me now, you don't see any of that. If you sit in front of me and ask a couple of run of the mill questions that probably have nothing to do with my illness or disability, you'd never know how much time I spend trying to stay well, you'd never know how housebound I really will be if you took away my mobility car. It's actually ridiculous to say that you can only qualify for higher rate mobility of PIP if you can't walk 20 metres. If you asked me to walk 20 metres up a hill, up some stairs, or on my worst day, a flat surface, I wouldn't reach the finishing point. If you asked me to walk 20 metres with a load of food shopping, I would genuinely struggle and probably not get to the point without someone helping. If you took away my car, I'd rely solely on people driving me. I wouldn't be able to get the bus, because whilst the bus stop is at the bottom of my street, you still have to remember that the nearest bus stop to your destination is still usually a ridiculous distance away. The nearest one to my hospital is at the bottom of a hill, where if I walk it, even feeling well, I have to stop and sit several times.
But again, ask me to fill in a vague form, or an unfairly judged medical by someone who doesn't know what cystic fibrosis is, then they'd take away my benefits without a second glance. They'd tell me I'm fit to work and I should toddle off to find a job. I'd love to work if I could. But there's a lot of irony in taking away my main source of travel and then telling me to go get a job, illness aside.
Plus, I do really feel for those who try and help us get what we need. Our CF social worker has told me he has his work cut out when the changes come to our area, when they reassess those on DLA and change us to PIP, because he'll be helping us fill in the forms and answer any questions and try and stop us from stressing over it all.
DLA and ESA are hard enough to apply for, but these new rules mean that hardly anyone will qualify for the higher rates. Yet bankers and politicians will sit in their massive houses with their big fat salaries and bonuses. Because I'm sure they really need them. They've never known what it's like to live on this side.
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