Nobody gets flowers for chronic illness pink and yellow rose pretty

Chronic Illness // 5 Common Misconceptions // Expectations vs Reality!

Hey guys! How are you?  I hope you’re well.  And for my spoonie friends, I hope you’re as well as you can be given the circumstances!  When I initially had the idea for this post, it was going to be quite serious.  I wanted to rant about how people don’t understand chronic illness, and those who romanticise about ‘how nice it must be’ to stay in bed all day. 

But now that I’ve thought about it a bit, I don’t really want this to be negative.  Instead, I’m going to take a light-hearted look at expectations vs reality when it comes to chronic illness! Chronic Illness expectations vs reality common chronic illness misconceptions

1.  Staying in bed all day, reclining on your clean, white sheets.  Cup of tea in hand, you flip through magazines and look serene…

Reality:  The bedsheets desperately need washing, but you’ve been too poorly to put a load of laundry on for a week.  Not to mention, they’re twisted all over the bed from you thrashing around all night, wide awake and in pain!  Cup of tea?  If you could get to the kettle, that’d be great…  And reading magazines is a distant memory, as your brain fog makes it too difficult to concentrate on reading.

2.  Oh well, at least if you’re off work you’ve got more time to spend with your family and friends, enjoying yourself!

Reality:  You’re lucky if some of your friends can even remember what your face looks like.  Oh, wait no, they’ll have seen your Snapchat/Facebook selfies complaining about how ill you feel!  Family?  Of course, you see your mum at least once a week! … When she comes round to clean for you because you’re not well enough to do it yourself anymore, and your husband is busy looking after you, feeding you and running to get your prescriptions most days!

3.  You must be pretty much pain-free with all the painkillers you take.  Not to mention feeling pretty ‘high’, which must be fun right?!

Reality:  Nope.  Your medications have been trial and error… mostly error! Occasionally you find one which helps a little bit, if you overlook all the side effects like it making you feel like your stomach is on fire.  You struggle to figure out why people seem to ‘feel good’ or ‘high’ on strong painkillers – you can’t even tell you’ve taken anything anymore!  You’ve probably downed enough to sedate a small elephant, and you’re still wide awake and in agonising pain. Chronic illness – it’s all fun, fun!

Nobody gets flowers for chronic illness pink and yellow rose pretty

Nobody gets flowers for chronic illness!

4.  I mean, your chronic illness can’t be that bad, surely?  You manage to make it out when you want to.  I’m sure I saw you at x’s birthday meal last month?!

Reality:  Fuck off.  Sorry, take a breath, let’s expand on that!  Chronic illness has no schedule.  You can’t switch it off and on at will, conveniently getting out of boring housework but going to all the fun social occasions.  If you saw us at a wedding or a birthday party, it’s part preparation and part sheer goddamn luck.  We’ve probably spend days, if not weeks, resting up in the hope we’ll feel well enough on the day (read ‘Chronic illness and social occasions don’t mix!‘).  But with a lot of chronic illnesses (such as M.E/CFS and fibromyalgia to mention just a couple), it’s impossible to tell how you will feel day to day. If we were lucky enough to make it to one (out of about 20) social occasions we were invited to, please don’t assume it means we’re fine.  And remember: we will probably spend several days even more exhausted and in pain that usual afterwards… as they say, “payback is a bitch”!  Also, if you see a spoonie looking nice and maybe wearing makeup and assume that means they feel fine – read this!

5.  My auntie’s cousin’s sister’s dog had *insert your chronic illness* and they’re cured since they started juicing/meditating/being gluten-free!

Reality:  if this far-removed family member of yours really does feel better now, chances are they probably didn’t have the illness in the first place.  A lot of people are misdiagnosed (or undiagnosed) and when they make a lifestyle or diet change, it helps whatever their issues actually was.   If this person is suggesting juicing or body wraps cured their friend… they are 98% certain to be reps for Juice Plus or This Works!  And they will target you relentlessly all over social media to try and sell your their crap.  I’m all for trying anything that could potentially help (believe me, I’ve tried so many different things!) but you need to keep a healthy level of common sense.

Have you heard any of these misconceptions?  Have any of them been said to you?  Let me know in the comments! If you’ve encountered any of these opinions, you’re probably a spoonie.  For a bit more light-hearted relief, check out 5 Signs You’re a Spoonie! Follow me on Bloglovin to keep up to date with all my posts. Follow

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25 thoughts on “Chronic Illness // 5 Common Misconceptions // Expectations vs Reality!

  1. Alice Mills says:

    Oh bless you, chronic illness is hard and not something to take lightly. I always think those “out of sight” illnesses mean it’s easy for people to forget they are there. Great post #SharingtheBlogLove

  2. Kerri Anne says:

    Lol! That really made me chuckle. I can relate to everything you said. I’ve been unfortunate enough to M.E for 17 years (with one 5 yr period of remission) and have experienced every comment, opinion and chronic illness related prejudice possible. At first it upset me alot, now I let it remind me just how strong I really am – just like everyone else facing a chronic illness. I personally believe It takes courage to fight an illness that is often invisible to others. So here’s a high five to everyone experiencing the roller coaster of chronic health challenges. So lets Keep our chins up and our hearts open 🙂

    • Katie Cupcake - Life with ME says:

      Hi Kerri Anne – thank you so much for reading and commenting, I really appreciate it! I’m sorry to hear you’ve had M.E for so long, that must’ve been tough. I’m glad you had a period of remission at least – hope you made the most of it 😀 I totally agree – spoonies are some of the strongest, most amazing people I’ve ever known! Chronic illness seems to make us much more compassionate to others. Sending you spoonie love! xxx

  3. Katy - Hot Pink Wellingtons says:

    Reading this I’m amazed that anyone thinks these things, but despite not having a chronic illness, I’ve encountered enough unsympathetic people in my life to believe that there are lots of people out there who do. I hope you can surround yourself with understanding and supportive people and ignore anyone who comes out with comments like these! Thanks for joining us at #SharingtheBlogLove

    • Katie Cupcake - Life with ME says:

      Sadly yes, there are still a lot of unkind or unsympathetic people out there. I’ve personally been so lucky with my family and friends, but have encountered people not truly believing me at my former workplace – I went to one wedding in a period of 12 months of being almost totally bed/housebound. That one wedding (my best friend since birth) lead someone to say they thought I was obviously well enough to work if I could go to that. If only they’d seen the days of resting beforehand, naps during the actual wedding and suffering in pain afterwards! Oh well, at least I have my family around me. Thanks so much for reading and commenting xx

  4. Samsam S. says:

    This is a great post, It annoys me sometimes when people start suggesting random things claiming that it cured someone from chronic illness.
    Stay strong Katie #SharingtheBlogLove

    • Katie Cupcake - Life with ME says:

      Haha I know, I’ve heard some hilarious claims of cures… although it usually ends up being Juice Plus, Forever Living or This Works related! If they were that much of a miracle cure, I think the NHS would adopt them lol! Thank you so much for reading and commenting! xx

  5. Laura - dear bear and beany says:

    I’m sorry that you had to write this post, that it was needed because of the misconceptions people have. I was shocked that these are the things people with chronic illness have to deal with regularly. I hope this post makes a difference and people think twice people making these comments. Thank you for joining us at #SharingtheBlogLove Laura x

    • Katie Cupcake - Life with ME says:

      I know, it’s such a shame. Luckily, not all of them happen to me often, but I have quite a lot of spoonie friends online and these things happen so regularly overall! Such a shame. Some of it is people genuinely just not knowing, but more often it’s cynicism and people not really believing you. Thank you so much for reading and commenting! xx

  6. Niamh Gabrielle says:

    I can totally relate to this post! I also have M.E and dealing with the stigma can make my symptoms worse as I become overwhelmed with guilt and sadness. I’ve just started blogging about my life with M.E too, but I’m a total newbie haha… All the love!

    • Katie Cupcake - Life with ME says:

      Aww I’m really sorry to hear that hun. I know it’s so difficult, but try not to feel guilty – you never asked for it! I say that, but it’s taken me 3 years to learn not to feel guilty (and even then I still do sometimes!) Oh cool, I’ll pop over and check your blog out! xx

  7. Natalie Jones says:

    I love this article! You really express what I go through with Mitochondrial disease. I would love to share it with my friends and family. However many of them would be offended by the profanity. May I have your permission to make very minor edits removing the profanity in favor of more appropriate language for the audience I would like to share it with? Thanks, Natalie Jones

    • Katie Cupcake - Life with ME says:

      Thank you, I’m really glad you like it! You are more than welcome to share it, although how would you plan to edit it? I assume it wouldn’t be reproduced elsewhere in it’s entirety? I’m happy for you to share it with the swear word blocked out if you’d like. xx

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