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!
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!
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. FollowNever miss another post from me! Click below to follow me on Bloglovin. If RSS or social media are more your style, check out my sidebar! Follow