Sunday, 16 November 2014

Did I Tell Loo..

Firstly, I’m well aware the topic of this blog isn’t particularly new ground to tread. It’s fairly tired material and spouted on an almost regular basis across health-sites and blogs. However as I’ve personally been pretty unwell lately and have encountered almost all of the following phrases, I felt a wee refresher was overdue. For that reason I’ve compiled a comprehensive list of the 10 things people with chronic illness do NOT want to hear. Please delight and disgust in equal measures, and utter them at your PERIL!

1.       ‘But you don’t look sick...’
(See also: ‘You look great! You must be feeling better!’)

Without a shadow of a doubt, the above phrase is the resounding Number One (or should that be number 2?! LOLZ! TEEHEE!) on every list of things NOT to say. It’s the single most infuriating thing anyone can say to anyone with a chronic and invisible illness. The frustration at these 5 words mainly stems from the insinuation that you as the patient, may be either lying at worst, or embellishing the truth at best. After many years of suffering from Crohn’s Disease myself, I’m still not even sure what the correct response should be when someone spouts this gem.  I’ve tried several retorts, from the faux-patient; ‘Well it’s an illness on the inside so it can be hard to tell just looking at me..’ to the almost explosive rage of ‘Are you calling me a liar?!’ Coincidentally, neither of which the Judge thought were good enough grounds for beating my colleagues senseless. Seriously though, it’s a hard statement to do anything with, and one which shows seemingly no concern; just judgement. At least that how it comes across in most cases. Invisible illnesses are at their most difficult when we, as patients, have to attempt to express how much unyielding agony we are in under the surface, when the outer shell looks like you’ve just stepped out of a Maybelline commercial. Pain and a plethora of other symptoms can strike at any time, completely unexpectedly in some cases, and without warning, so please don’t assume the packaging matches the product within, without all the facts.
So what to say instead?  - How about asking about our IBD if you don’t understand and would like to? Or if you don’t care and just want to be a Bitchy McBitcherson about it, nothing at all is just as good.

2.      “My friend/colleague/family member has it and she’s coping really well…/really badly…”
(See also: “You just need to learn how to manage it”)

This comment and all its different forms can be incredibly damaging to patients. It’s perhaps most detrimental to those who are recently diagnosed and still unsure of the condition they have been lumbered with and its magnitude. It’s a human instinct to share experiences, and knowledge. Having things in common with others is one of the quickest ways to build a bond, so I understand why those who hear that patients have IBD have an urge to share what they know of it themselves. However, in my experience, these nuggets of information from non-patients are often very harmful to our state of mind. In the case of a comment implying someone they know is doing better than you, it almost implies we aren’t quite trying hard enough, or that we are lying down to our illness. In the case of hearing horror stories someone they know is doing much worse it can lead to panic, massive anxiety and uncertainty about the future.
So what to say instead?  - “My friend is also a sufferer, I’m always up for learning more about the condition so I can help you both!”

3.      “You’d feel better if you just relaxed/took a holiday...”
(See also: “I read about some alternative therapies, have you thought about trying...”)

First things first, we have thought about everything. There isn’t a treatment, or potential medication left unturned in our quest for intestinal normality. But our illnesses regrettably don’t have a cure. Patronising us with such comments as ‘take a break’ won’t help. We’ll still feel awful and we’ll still have an incurable illness. And no we’re not trying to be negative, just realistic.
So what to say instead?  - “Wish you could get a break from your illness!”

4.      “Why are you always tired?”
(See also: “Everyone gets tired”)

Prolonged fatigue is an incredibly common symptom of most chronic illnesses. Fatigue isn’t ‘just’ tiredness. It’s intense and unending exhaustion. No amount of sleep is ever enough to shake it off. A nap or an extra hour in bed here and there just won’t cut it. People who suffer from incurable illnesses understand what it means to be TIRED. They feel they make collapse if they don’t catch a few hours and yet it’s still never enough. When people question this utter exhaustion it’s both upsetting and infuriating in equal measures. We know everyone gets tired, but not everyone has everyday life to deal with and a chronic illness at the same time.
So what to say instead?  - “Anything I can do to lighten your load?”

5.      “You just need to make some changes to your diet”
(See also: “Should you be eating that?”)

Please, please don’t tell us what/where/when to eat. When we can eat it’s like Christmas Day, and when we can enjoy a meal without a hint of pain or nausea, it’s like we’ve reached VALHALLA. Food and drink and IBD patients have a notorious love-hate relationship whereby we often struggle to maintain a healthy weight. When we can eat, we can be utterly and almost instantaneously floored by incredible abdominal pain, or find ourselves getting up close and personal with the porcelain for the remainder of the evening. Concern about our diets is natural for those who care about us but It’s very important we don’t feel under scrutiny whenever we are eating in company.
So what to say instead?  - “What can I make you to eat?”

6.      “You’re lucky you’re always so thin”
(See also: “Have you gained/lost weight?”)

Weight is a very delicate subject for IBD patients. We can fluctuate from drastic and life-threatening weight loss, to piling on the pounds through medications such as ‘hamster-cheek’ steroids.  Losing weight is rarely a positive for us. In fact it’s a sign things are going downhill health wise. When I was at my sickest I had lost 3stone in a month and dropped 2 dress sizes, and most horrifying, 5 bra sizes. It’s no fun being ‘skinny’ with an incurable illness.
So what to say instead?  - “How can I help you get that weight back on?”

7.      “It will get better, just be patient”
(See also: “You’ll feel better after your op/meds/a good meal”)
Again the incurable part rears its ugly head. We won’t ever get better. We may at some point feel healthier than when we’ve been at our lowest medical ebb, however time won’t heal IBD. It’s not a cold or flu where in a few days we will be fighting fit again, we’ll be fighting our conditions for many, many years to come. And if that sentence alone sounds depressing, imagine living with it.

So what to say instead?  - “I hope you start to feel a bit perkier soon”

8.      “Are you in the bathroom again?!”
(See also: “Must be great to get some many extra breaks!”)
It may be hard to believe but IBD patients don’t actually want to spend hour after hour in excruciating agony, clinging on for dear life to a radiator or a sink or whatever is closest to hand. Just a heads-up, we aren’t actually hiding in there, we are forced onto the porcelain throne through no fault of our own. It’s actually not ideal for us to be ensconced in lavatorial duties as we also have lives outside of our defunct insides.

So what to say instead?  - How about no comment at all? Or perhaps a gentle question as to whether there’s anything you can do? It’s not rocket science.

9.      “You’re too young to be sick”
There is no age restriction on illness. IBD research has shown it is most prevalent from teens to people in their 30’s. However like most chronic illnesses it really can strike any age at any time. Therefore the idea that age is a barometer of health is utterly redundant in most cases. IBD has many other off-shoots of the condition such as arthritis and joint pain, and funnily enough it’s no fun to be a teenager and having to sit down whilst out at the local discothèque.

So what to say instead?  - “I feel for you!”

10.  “It could be worse…”
(See also: “You should consider yourself lucky”)

I’d like to think it goes without saying that patients with any existing condition, and as a matter of course EVERY HUMAN BEING ALIVE, knows that things could always be ‘worse’. But what a redundant concept that very phrase is. I’ve never been sure what it’s meant to instil in the recipient; grace, embarrassment, silent reflection? It certainly makes me want to silently reflect on the bodily harm I could do to the person saying it, and not much else.
So what to say instead?  - Nothing. How about a hug?

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