Friday, 2 December 2016

7 Parts Of My Chronic Illness That Not Everyone Sees

I'm always very open and honest about my chronic illnesses (or at least I try to be) but there's still sides of my condition that not everyone is aware of. Why? Because my health makes me quite vulnerable and only people that live with me see me at my worst. At the moment I live with my boyfriend but when I was living at home, my mum, Pops and brother knew exactly what I deal with.

You never know what happens behind closed doors but I'm going to tell you a few things that appear often in my little world of pain.

  1. Apologising for being a burden
    I do this so often, 'sorry' might as well be tattooed on my forehead. If I'm having a particularly bad time and my boyfriend or family member is looking after me, I can't stop apologising. They'll get me a drink; I'll apologise. They'll get my a hot water bottle; I'll apologise. They'll hold my hair as I throw up; I'll apologise. Do you get the idea? If I wasn't chronically ill they wouldn't have to look after me the way they do so I feel I have to keep saying sorry for putting them out. I know they don't mind and they'd walk through fire for me but something in me feels like I have to keep saying it.

  2. Saying 'thank you' too much
    Similarly to apologising, I'm always expressing gratitude, mostly way too often. I'm usually sobbing whilst thanking and apologising simultaneously. My boyfriend tells me I don't have to do either as he'll always look after me but I feel like I need to thank him; I guess I'm mainly grateful to him for not walking away when it gets tough.

  3. Worrying
    I've always been a worrier but when it comes to my health, I'm ridiculous. 'What if I fall?' 'What if there's no wheelchair access?' 'What if I can't go?' 'What if I'm in too much pain?' 'What if someone is rude about my disability?' 'What if...?' I'm trying my best to work through this but my health is a massive part of my anxiety.

  4. Crying/screaming
    I'm not really the crying kind but when I'm in a particularly bad pain flare, I cry and/or scream. Sometimes even breathing can hurt and I'll gasp in agony. I try not to let my pain get so bad but when I've had a dislocation or an accident, I have no control over it. I feel like my whole body is being attacked and often end up in bed in tears.

  5. Angry-demon-bitch
    When you're in pain day-in-day-out, it gets very tedious and so bloody exhausting; naturally I can be irritable verging on Hulk-levels. I will bite your head off and I will regret it later. I've been in pain every day for seventeen years so I'm bound to get pissed off. I know it doesn't excuse me being nasty to my loved ones and I always apologise, but sometimes I forget they're not mind-readers and unaware of how bad my pain is on a particular day.

  6. Other sickness
    Having a really bad pain day usually kicks off all my other conditions; I'll end up lying on the bathroom floor, crying, nauseous and throwing up, with a migraine, shaking, dehydrated and in agony. The pain is widespread, everything hurts, and this mixed with stress means I end up a mess. The annoying thing with when I've been vomiting is I don't know if I've thrown up my medication or whether they're going to take some of the pain away. I end up really anxious and unable to take anymore meds in case I double-dose but desperately needing more to help with the pain. Shitty times.

  7. I can't speak
    I'm definitely not coherent when I'm in a flare, I might as well not even try to speak. Luckily my boyfriend usually knows what I mean or want. I come across drunk, my words are very slurred and my brain doesn't work like I want it to. I usually can't summon the most obvious word and it makes me really frustrated. Brain fog is bad but this is horrible.

Were you aware of or do any of these?


  1. Only ever single one of them. It's hard. I feel like a burden too. I want to not need their help but then the thought of them not being there to help is also terrifying. It's like a vicious cycle in my head.

  2. I'm still in that weird place where I don't want to ask for help. It sucks and the burden feeling is amplified when I do ask. I go through all of these too. Thank you for sharing.

  3. Sarah, I couldn't have put it better myself! Last few weeks have been rough and I haven't stopped apologising for being a nuisance, needing help, fainting, falling etc etc. Wish I could stop feeling the need to justify feeling myself! Will reblog with link on PainPals for you, C x

    1. It's very difficult indeed. Thank you for sharing x

  4. Oh Sarah, I can relate way too much. I'm a huge worrier and get hella anxious about being a burden and not being able to do small, normal every day things. I also become really quiet when I'm in pain and discomfort, I usually want to be alone but I also want someone there, just not talking or looking at me. That's probably really weird but hey, haha! This is such an honest post, I love it.

    Lottie Unlimited | Beauty, +SizeFashion and Lifestyle Blog

    1. I completely relate, I like to know someone is close enough to be able to help if I need them x

  5. I can identify with this so much. Especially apologizing. I constantly say that I'm sorry. I need to quite being so apologetic just for breathing. ;) Hugs. Love this post. Sharing.

  6. I can relate with this so much, especially when I was really bad last year. I constantly apologise for everything to everyone, I'm pretty certain I've apologised to my doctors for having to go there.

  7. I really can relate to these. Having a chronic illness sucks and most people dont have a clue what goes on with us. Im constantly appologising when I ask someone to do something for me or help me get up when I have a flare up. Its an awful illness but makes me so happy when other talk about it and how ot effects them. I try to be open about my stuggle but Im a bit weary because Ive had negative feedback in my realy life before :( hopefully this makes sense right now, but I cant think straight. #spoonieprops xxx

  8. This. My family have learnt to laugh at my angry demon bitch now and just ignore me. I know I'm being ridiculous but I just cant stop biting peoples heads off. Very few people have seen me at my worst. I even managed to hide it from most of my friends when I was at uni. It makes it harder for them to understand but I don't want everyone to see me at my least fabulous
    Beth x

    1. I was the same, I struggled so much at uni but tried to hide the worst of it. We can't help but be fabulous though x


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