If you do an internet search for comments that you should avoid making to people with chronic health conditions you will find yourself inundated with examples. Many of these relate to specific conditions and are often written either by health professionals or people living with the health condition under discussion.
The reality is that we are all different and what may seem silly to one person, may be devastating to another. What I would say instead is that before you inadvertently hurt someone, just take a moment to think about what you are saying and try putting yourself in the other person's position. If you think that what you are about to say would upset you, then the sensible and caring option is not to make that comment. Of course, many upsetting comments are made with the best of intentions, but that is not the point. Rather, the point is how comments are received.
While I cannot speak for everyone else, I am going to give you some examples of comments that have been made to me over the past eleven years since I first became ill. I will include a little of my internal monologue - which makes me sound incredibly grouchy - to give you some an idea how these effected me. I have heard all of these more than once, in fact more than two dozen times and I have to say that they get more annoying over time, not less.
1) "It would do you good to get out of that flat for a bit instead of always sitting indoors."
My internal response: Really? You think? Okay, well as soon as I come up with a magical cure that allows me to sit up, have a shower, get dressed, get down the stairs, walk along the path and go wherever, then I'll do just that!
I agree, that response is something best kept inside my head, just like the person talking to me would have been better to keep their comment inside their head... In all seriousness, I would love nothing more than to get outdoors and just walk through the countryside and experience the peace that it brings me. Unfortunately the levels of pain and fatigue that I experience do not allow me to do that. It is not down to lack of desire, or lack of willpower, but down to inability as a direct result of my medical conditions. Having it pointed out that I do not leave the flat very often does nothing for my morale. It has a negative, rather than positive, effect.
2) "You don't need all that medication, it doesn't do you any good."
My thoughts: Hmm, I wasn't aware you had degrees in medicine or pharmacology. When did you gain those and which University did you study at?
If you believe that I enjoy taking so many different medications then you really don't know me very well. The medications that I take are, most definitely, necessary. Without them I am in so much pain that I vomit regularly, am unable to stand at all (even with help and two elbow crutches) and unable to tolerate even the touch of my bed sheets. It is extremely hard to describe pain to people who have only ever experienced it fleetingly, but try this for an analogy: Imagine having enough layers of skin removed to expose every nerve end in your body and then imagine someone grabbing hold of your arm. That describes just one element of my pain.
3) "I know exactly how you feel."
My thoughts: Really? You're a mind reader now? When did that happen? You could earn a fortune with that trick!
This one appears on every countdown list of things not to say. Please understand that you do not know how I feel because you are not me. You have not lived my life, had my experiences and do not have the same pain and fatigue that I do. Just as I am not you and so cannot say that I know how you feel. We are individuals and while you may empathise with my pain, you certainly do not know how I feel. If you want to say anything, tell me that you empathise, that you cannot understand my pain because you do not have a pain condition or whatever your individual circumstances are. What I would tell you if the situation was reversed is that while I cannot understand how your pain affects you, I have a pain condition myself and know how much that impacts on my life; I can empathise with you and if you ever feel like talking about things I am here to listen. I probably won't hug you, for the record, because it often hurts like hell when people hug me, particularly if I am not expecting it and haven't had time to mentally brace myself.
4) (often as an extension of 3) "...I am tired as well."
My thoughts: I would give my left arm to feel tired.
Really. I would. Tired would be a luxury. Fatigue is a different kettle of fish altogether. I have a couple of different types of fatigue: first is muscular fatigue. You may have some idea of how this feels if you have ever done long-distance running, or weight training. It feels very similar to lactic acid where there is just nothing left in your muscles except for a persistent ache. Where a healthy person may experience this while running a marathon, I often experience it from lifting the duvet off me. That is why I have to choose between eating and having a shower, or sitting up and talking. Mental fatigue is another, while general fatigue is a third. All feel distinctly different to me.
5) "You're so brave" or "I don't know how you cope"
My thoughts: What else am I going to do? (this always baffles me).
I suppose other choices could be to constantly moan (but I would bore myself if I did that) or to commit suicide. Now I know this may be controversial to some people, but I do believe that we have a right to choose when we die and to die with dignity if we, as individuals, wish to do so. I have no desire to do so at present though. I am not brave, I am nothing special. Like some of my friends in similar positions to me, I think that the person caring for me is far braver. They have the choice to walk away, yet choose to stay. Unpaid carers save our economy over £120 BILLION EVERY YEAR by choosing to stay and care for their loved ones. They push themselves to carry on even when they are exhausted beyond belief, they work for nothing, they are not supported by the 'authorities' (often quite the opposite) and they perform a thankless task that goes unrecognised. No, I am definitely not the brave one; my husband, who works as my full-time carer and personally saves the tax-payer over £35, 000 each and every year as he spends over 70 hours every week actively caring for me, is the brave one. Lets be honest - how many of you could do that?
Over the years I have been on the receiving end of more ill-advised comments than I can remember, largely because my short-term memory is often effected by both my health-conditions and the side-effects of some of the medications. If I am honest, I also have to admit that I now switch off when I hear an offensive and ill-considered lecture from someone who thinks they know better than me and my health-care team. But the point of writing this genuinely isn't to point out individuals or make people feel guilty; it is simply to ask people to just take an extra second to think before trotting out remarks that may be hurtful to those on the receiving end. Putting yourself in the place of a person
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