Am I invisible?
Do me a favour and look at me and tell me what you see?
What do you think when you take a quick glance at me?
Do I fit your stereotypes and preconceptions?
Do I look disabled ‘enough’ to justify your judgement?
Do you pretend I don’t exist to justify your lack of help and support?
Does mocking me and my struggles make you feel big, like you some how, you are above everyone else?
Do I make you embarrassed? No- not of me, but of yourself, does being in my company make you take a look at yourself. How you treat your self and others?
Do you see the big black bags around my eyes, the ones that highlight how exhausted I am with life, with my illness and your judgment.
The black bags symbolise how hard my body works to survive each day, shows that even at night when my body’s fast asleep, there’s not enough sleep in the world to replenish my energy supply.
I have to prioritise what absolutely needs doing every day, ration the energy I have, most days I’ve achieved something if I’ve got up, dressed and felt well enough to leave the house.
Yes you may sit in your ivory tower wondering how on Earth I’m tired when I don’t work or have your responsibilities but what you fail to see is how mentally and physically exhausting managing a chronic illness is. Being in physical pain takes all the enthusiasm and energy you need, when your in pain you can’t rest, sleep, eat. These are the most basic tasks for wellbeing which often were unable to complete. Then there’s the anxiety and depression which can leave you feeling low and worthless, with lack of motivation and low self esteem. Try getting nutrition from food and drink when you spend most of the day throwing up, with a blockage or managing the storm with an antiemetic. Then there’s broken sleep from stoma leaks which requires stripping the bed, clean bedding and needing a shower and assistance at 3am. My bladder always feels full, imagine needing to rest but feeling like the dam is going to burst all the time. So yes, I look tired but let me reassure you each day feels like a marathon and it’s no bed of roses being medically retired so save your judgement from falling on my ears because if I had it my way I’d be in my dream profession working away.
You might avoid me because you can’t understand why I don’t get better, you think I’m a kill joy to be around or you think I’m a hypochondriac. You stop making contact with me hoping I won’t notice you cutting me away. The thing is I know what your doing, I can see it happening. No matter how quietly you think your doing it or how nicely your doing it, it still hurts. The reason it hurts is because if you spent time in my company you’d know how genuine I am. You’d know how much it hurts, you’d know how hard I try not to let my illness define me. Yes, I had to grow up and mature quickly but I’m still human, I still seek friendship. Maybe I have different priorities now because I see life differently but don’t make me invisible because of it. It kills me to see events where all my friends and family are at on social media yet I didn’t get an invite. Do you not think I’d love to have some girl time, get out of my house for a few hours, have fun? You wouldn’t know… why? Because I’m a hindrance to you. My illness has taught me how to spot fake people and relationships, I get I’m not a crowd follower I never have been, I’ve always tried to be true to myself. I won’t follow crazes, I don’t kiss people’s asses and I certainly have always been a heart on my sleeve kinda gal. If me talking about my illnesses or disability makes you uncomfortable then that’s your issue, again you need to re-evaluate what part of that makes you uncomfortable. Usually it’s because having a stoma isn’t cool, having a 24 year old friend with a cane isn’t instagram material and it’s pretty much social suicide to be seen spending time with someone who regularly blogs on social media publicly about her imperfections because your to scared to acknowledge you might have imperfections of your own.
It seems you get penalised on your bad days but there’s just as much judgment, if not more judgment on your good days. I very rarely have good days, a good day is defined not by feeling ‘better’ but by feeling strong enough to achieve more that day than usual. A good day for me is feeling well enough to get out of my pjs, do something with my birds nest of a hair and maybe, just maybe feel well enough to put some make up on a feel human. Don’t be mistaken by the propaganda the media like to assert, having a good day doesn’t make me a benefit cheat or a fake. On good days; my pain is still as present as my bad days, my fatigue still renders me to my knees and I can assure you I’m not miraculously better. Do you know how much a small errand takes it out of my body? If I was to nip to Tesco for one item I’d be in bed unable to function properly for 24 hours. Should I feel I wanted to go clothes shopping or go out for tea I’m looking at a good 5 days of recuperation. I’ve lost count of how many times I’ve been harassed for parking in a disabled bay or god forbid I use the disabled toilets.
As humans we seem to be loosing our way with humanity, we’re all too quick to judge. I’ve lost count how many times in the past I’ve had family members try and push me to take things on or push me to attend events I don’t feel well enough to attend. With the flippant attitude of ‘so what if it makes you feel tired, shitty and unwell, you feel that way anyway, it’s not like you have to take time off work to recuperate like x family member’.
You perceive those with disability benefits to be living a life of luxury because that’s where your led to believe all you hard working money goes. Programmes like Jeremy Kyle has led the general public to think every who receives government support is some kind of cheat. What you don’t see is the government taking away this help from those who need it most, the government see anyone with a beating heart fit to undertake work. Say in your judgmental little world I’m sent back to work am I really fit enough to be back on the wards nursing other poorly patients whilst I have the strongest opioids running through my system, stoma bag leaks my carer can’t help me wash and change at work, have to inject myself with warfarin for blood clots so can’t help with manual care or anything physical. Oh did I forget I’d have to do this from my wheelchair? Medication makes me sleepy and forgetful how will I be responsible and safe? Would you want me looking after you, even though I can’t look after myself? Again it’s easy to judge.
Let me tell you the reality of the welfare system; we are up to our eyes in debt, the day we get paid it ALL goes out on bills and we’re already counting the days down to payday, some days we have no money for food so we make do with the very little we have. We don’t go out, we don’t own anything materialistic, we don’t have an expensive car, we don’t go on holidays, we can’t afford to go out every weekend doing drink and drugs, we don’t spent money on stupid things, we can’t afford cosmetic procedures or this life sold on social media. So I feel invisible as it is, your judgment makes me feel even less visible. Your judgement can cause me to feel embarrassed to go and be out when we can afford it because we fear the backlash of ‘its alright for some’ mentality. Or ‘can’t be that unwell’.
Your judgment can make me feel invisible. It makes me feel alone and alienated. Please just think before you exert your judgement.