An open letter to the incomprehensibly ignorant and vindictive ****er who thought they would do their public duty by reporting me for benefit fraud.

I would like you to imagine something for me. I would like you to imagine living every day in terror. Not the ‘what if it rains today?’ or ‘oh that mobile phone bill was a little high this month’ fear, but genuine terror. Terror of waking up every day to agonising pain. Terror of not being able to get up the stairs to use the bathroom.  Terror of never having somebody love you because you are disabled. Terror of not being able to drive, have children, experience the basic joys of life that others do. Terror of losing your house. Terror of losing your mind from pain and isolation. Then add to that mix the longing to not be ill, the jealousy of watching other people go about their lives with no comprehension as to how much of a gift their bodies truly are. Hating yourself for being jealous of your friends and loved ones who are able-bodied and free.

I was diagnosed with Fibromyalgia and Hypermobility Syndrome when I was a teenager. I was told that I would spend the rest of my life in chronic, widespread, pain and fatigue. That I would never get better. That there is no cure and no treatment.  What I wasn’t told is just how far-reaching the suffering is. I spent the first year in denial, and made myself so much worse – until I was hospitalised in a critical condition for a week. All my joints hurt, always, every day. My muscles ache every day. I suffer from migraines. Exhaustion. Fainting spells. Excruciating pain. The cold physically hurts me until I weep. In fact I spend the majority of my life asleep or crying because of the pain. But the pain I could deal with.

What I can’t deal with is the unbelievable intolerance and cruelty of other people. Do you know how hard it is to get a Blue Badge? I have one because my consultant had to fight my corner for me against ignorant service providers, but the very fact I have one implies that I damn well need one. What I don’t need is the judgement and verbal abuse from other people, whenever I use it, who clearly don’t believe that young people can be so ill. People like you. I am 26 and until recently I had never done the things everyone else does. I had never been abroad, never been to a zoo, never been on a plane. Because my body imposes limitations and risks on me that are sometimes immeasurable, sometimes incomprehensible. I was lucky to have someone who cared for me enough to help me do these things – someone who understood my condition enough to help me through the unplannable downsides of doing these things. You are lucky. You can do whatever you want, whenever you want, with no thought as to how many days in bed each activity will cost you, or how many hours of pain, or how many opiates you will need to get through it. You will never be left by people you love for having a disability which you do not want and cannot help.

You will never suffer the psychological harm of living in agony every single day. Of feeling guilty and useless. Of feeling worthless because you have to rely on the state when you would love nothing more than to provide for yourself. Of being told by other people that you look fine, that you cant possibly be ill, when they do not suffer inside the cage of their own bodies. My illnesses are LIFELONG, they are CHRONIC and they are INVISIBLE to people who do not spend every minute with me. Because I do not want to be ill I have to fight every time I leave the house to put a brave face on. When you see me you see opiates, layers of makeup, and energy supplements. You see someone who may get hyperactive in the company of others because they spend the majority of their time in mind-numbing isolation, alone with their pain. What you don’t see is the suffering afterwards. What you don’t see is the weeping, the necessary bed rest, the therapy, the endless doctors, consultants, psychiatrists.

May I suggest – if you are so civically minded – instead of wasting everyone’s time and much-needed energy and limited resources with your spiteful phone calls, that you volunteer to work with disabled people? Not that I’d wish to inflict your intolerant and bigoted company on people who suffer enough, but if nothing else you may educate yourself as to the severity of what other people suffer behind their brave appearances.

Finally, despite your intensely callous and despicably malevolent behaviour, I for one would never wish Fibromyalgia or Hypermobility Syndrome and the associated life-long pain, constraints, and depression on you – or anyone close to you. Because I have something you clearly lack at even the most fundamental level – compassion.

Yours etc.

A person braver than you could ever hope to be.

*This blog post has been moved from womeninecstasy.wordpress where it was posted in 2015

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