Wednesday, 7 October 2015

Chronic Illness is Hard Enough: All I ask for is Empathy, Part Two


First of all can I just define what a chronic illness is as there seems to be so many people that have never experienced anything more than the flu or acute pain who think they're experts on what it is like to live with a chronic condition. If you're one of these healthy little experts please read on and let me enlighten you; do you know what, even if you're not healthy but have some form of condition/are a Spoonie yourself and compare your health to others or don't believe a chronic illness is 'that bad' - carry on reading.

A chronic condition is a long lasting illness 'which causes continuous or episodic periods of incapacity.' The keyword is incapacity - it prevents you from completing everyday tasks, it impacts your life at all times or causes flare-ups. A cold is not a chronic illness. Anyone, can be chronically ill; illness doesn't discriminate.

There are various types of chronic illnesses, sufferers may look absolutely fine, be able to walk unaided but be in absolute agony, others may require mobility aids, some may not have mobility issues at all, but suffer with mental health, heart, lung, digestion problems. No chronic condition outranks another, everyone is different and what really annoys me is the judgement of ignorant, ill-informed, know-it-alls. 

Don't compare yourself to me, to anyone; until you have lived a day in another persons shoes, you cannot ascertain how much pain or suffering that person is going through. Pain is subjective - it's not a competition. Why would you want to be suffering more than another person, or them suffering more than you? You can't tell. My pain threshold is really high because I'm used to living in constant pain but I would never judge someone who hasn't experienced the type of pain I'm used to - how can I know what someone else could handle? I can't and neither can you. 

I'm hurt, annoyed, upset, angry, tired, of the lack of empathy, the lack of understanding, the downright idiocy of certain people who are too small-minded to do a bit of research. There's a lot of different chronic conditions, you won't have heard of them all, I haven't, but you know what I am able to do? EMPATHISE. 

I'm not asking you to complete hours of research, you don't even have to know how to spell the condition, what I'm asking is: when I tell you that the pain is so bad that I'm seriously considering sawing my leg off, you believe my pain is real; you don't compare it to the time you fell over and banged your knee; you don't tell me how bad your friends-sisters-boyfriend is; you don't laugh it off and tell me I'll get better. It won't, my life is all about pain management and planning my every move so my flares are less often, but they'll never go away. 

And do you know what can trigger a flare-up? Stress. So your unhelpful comments like, 'I get up, live my life and have fun despite having a bad back' are redundant - well fucking done, some of us don't have a choice. Do you think that I don't want to participate in society? The constant negative opinions hurt, my body hurts, my head hurts; it's difficult enough living chronic life without your words. Please take into consideration that I've tried every treatment you can suggest, so don't bother. Don't waste my time or yours. Don't pity me, telling me I'm too young, as like I said - illness doesn't discriminate. Believe me when I tell you that I need to spend some time on my own, that my head is so messed up and I could break down in tears at any given second. Don't tell me to 'man up'; don't patronise me; don't tell me to 'look on the bright side,' if you catch me on the wrong day I'll either bite your head off, cut you out of my life or imagine various ways of killing you. Just please, empathise. I'm not asking for a hug or a long, emotional conversation, your support is all I need. 

Bare in mind, you won't see me on my bad days, I can't get out of bed, let alone leave the house. You don't know that my boyfriend has had to put my socks on as I scream in agony and then cry as my independence floats away. Or when the demon in my head is scratching at the back of my eyes and all I can do is curl up in a ball, sobbing. Why would I let anyone see me like that? You see me when I'm wearing my mask, when I'm in less pain, when I've very slowly got ready so I can actually go outside.

People are battling monsters every second, you don't need to understand, just show a bit of empathy. That's all I ask.

My first post about Empathy can be found | here |

20 comments:

  1. I'm sure this was tough for you to put into words, Sarah and I love how you've been able to express your thoughts and feelings in this post.
    People are too quick to judge in all aspects of life and it's very true, a little empathy and compassion costs nothing.
    Big loves <3
    Gillian  xx  EyelinerFlicks

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    1. Thank you my darling, it took a lot to post but I'm glad I did as its been bothering me quite a lot lately x

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  2. Comparison is the worst. Although we all share similarities, our individual journeys are unique to us and only we know what we are going through. I get frustrated at the bombardment of "have you thought of this or tried this" because the answer is always yes. I'm an intelligent person. I constantly read up on things. Instead of that, tell me I'm doing as well as I can. Constant suggestions make me feel like a failure. But what shocks me the most is the comparison that happens between the chronically ill. The people who have spent years working towards better health-- and who achieve it-- are torn down by others. "They can't have had Fibro", "they were never as ill as me". It's unbelievable people would think like that, rather than think "that's amazing well done you" and want to learn from them.

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    1. I totally agree with you, Donna. Comparison is so ridiculous, everybody is fighting some kind of battle, there is no competition attached, it does my head in (as you can tell from this post lol). I wish there was more positivity and understanding. I'm just incredibly lucky to have all my Twitter spoonie network and the people that love me - nobody else matters x

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  3. This is amazing Sarah! Well done.

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  4. The world has got such a shitty place! I'm currently having the same sort of issues with empathy and the lack of. It never crosses my mind when someone says they are ill for me to criticise...why should they!

    Jess @ www.JuicyyyJesss.co.uk

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    1. Exactly, it really doesn't make any sense x

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  5. I have so longed to find someone else who can describe it as I can. Days when I can't get out of bed without the help of my husband or when I sleep for 2 days straight. I too have a high tolerance for pain but, on my bad days, please just leave me alone. Some get offended by not understanding. But when it hurts to even cry, or walk to use the toilet trust me it's like NO Pain you can ever describe. I've always wanted to write about this, a book on Fibromyalgia, Chronic Fatigue, Chronic Pain and Chronic Illness. Maybe one day.

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    1. It's very difficult, indeed. Thanks for taking the time to read and comment :) Hope you're having a good day x

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  6. WOW You just said all the things I think of every day! People can't understand that most "pain" can not be seen! Here is hopping you have more good days then bad!

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    1. Exactly, they have no idea. Thanks, hope you do too x

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  7. Here here lovely! I find it hard blogging with chronic illness and I feel sometimes some just 'don't' want to know..they just want posts. Whereas some do have empathy, I find in the main, only fellow chronics fighters understand. Fab to find your blog.
    heidi x

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  8. This is a fantastic post :) It really spoke to me and illustrated perfectly how I've been feeling lately.

    I'm getting tired of even the people closest to me recently who seem to be constantly trying to compare my pain to something they've experienced. It's hard because I want to be nice to them, but I can't help but feel annoyed.

    www.raiin-monkey.blogspot.com

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    1. Thank you, lovely, I really appreciate it. I don't think people understand how subjective pain is and there is literally no way it can be compared. Massive hugs to you x

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  9. Thank you Sarah! I have been surrounded by people who just haven't understood since my Fibromyalgia came on at 27 years. Lately my closest friend has been inducing flare-ups with STRESS and reading this made me look back on our two year friendship with clearer eyes.

    I have been sobbing since I started part one, and I'm still crying, but now just tears of joy that I found You and the Spoonies on Twitter. You have re-affirmed my right to exist and that my struggles are real. If my other +/- friends don't get it, they aren't right for me anymore. I can never thank you enough.

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    1. Aww bless you, always here if you need someone to chat to, feel free to drop me an email or tweet x

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  10. I understand. (((Sarah))) I usually avoid EDS sites because everybody else seems to be coping better than I am. But, like you said, nobody knows the extent of another person's pain. I have scars on my back, where I have tried to tear out my spine to stop the pain. Today I turned 40. For most people, that's an excuse to have a party. For me, it means that I have now spent half of my life in agony. My disability has cost me friendships and even family members, stolen my ability to do anything I want to. I spend my life in a hospital bed, constantly trying to strengthen my muscles enough to be able to sit up for a while, hold my head up, interact with my son. And fight the little critters that crawl around inside, constantly gnawing at me. Yet even the doctors don't understand how totally destructive the pain is. You are amazing, that you are battling this and able to blog about it, to help others in the same situation. If I had them, I'd send you a whole canteen of spoons!

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    1. Aww thank you so much, sending you all the love and hugs. Belated Happy Birthday xo

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