Friday, 15 February 2013

25 Things Not to Say to Someone With a Chronic Illness

These are some of the worst things to say to a chronic illness sufferer (you may have heard some of these before...)

1. 'But you don't look sick.' If you have an 'invisible illness,' chances are you will have heard this before. People expect sick people to be in a wheelchair or hooked up to machines in the hospital, despite the fact that 96% of chronic illnesses and disabilities are invisible. Besides, health is not always visible either.

2. You need to think positive. So the reason I have a life-threatening debilitating illness is because I do not think happy thoughts? Wouldn't it be awesome if we could think our way out of our illness! Think before judging. 

3. You need to get out more. If we could get out more, believe me, we would. Being bed-bound or house-bound is far from my idea of fun; boredom and isolation are my constant companions.

4. I’d love to stay in bed all day like you…okay then, let's swap places! Again, being bed-bound is a real heap of joy...being stuck in bed all the time in constant pain while the rest of the world goes on without you, wears you down after a while. 

5. You just need to need to exercise. Yes, exercise can be beneficial in many cases, but it is very hard to exercise when you’re barely able to dress yourself. Besides, a lack of exercise is not the reason I'm ill; I'm ill because my immune system hates me.  

6. It’s all in your head. When a doctor can't find an explanation for your symptoms, they assume that you're making it up. It took several years and several doctors to finally get my diagnoses, because right from the start they thought that I was imagining it. 

7. Everyone gets aches and pains. But a 'few aches and pains' do not require strong opioid pain medications to deal with them...

8. You just need some sunlight and fresh air. It is rather Victorian belief that illnesses are caused by a lack of fresh air...fortunately, medicine has come a long way since the age of blood-letting and leeches! Oh, and by the way, sunlight is not exactly the best thing for a lupus sufferer!

9. You’re just depressed. The first doctor I saw immediately blamed my symptoms on depression. Though she suspected a lupus-like illness, she thought that it was more likely that I was 'just' depressed because I seemed 'weepy'. Well, wouldn't you feel weepy if you felt very ill but no-one believed you? It should be noted that in an illness like lupus, depression can be a primary symptom; the depression should be investigated further before sending the patient straight to the psychiatrist.

10. Others who have it worse than you. Suffering is relative and subjective; each person’s experience of pain is completely different to someone else’s. It is like saying "You can't be happy, because there are others who are happier than you." In life, someone is always be worse off than us, but it doesn't mean that our suffering is nothing and we should not be made to feel guilty about it.

11. I wish I could sit on the couch all day watching TV and not go to work. Sitting on the couch all day watching TV is incredibly boring (and it gives you a sore arse), but if I had a choice, if I was fit  enough to work, I would be working and paying the bills. I do not choose to sit around, bored out of my skull, doing nothing all day while my partner slaves away at his job all day every day to keep a roof over our heads.

12. It can’t be that bad. Would you like to swap bodies with me for 24 hours??

13. My aunt had this condition and she got better. Each patient experiences their illness differently to others with the same condition: some severely, some mildly; with or without dangerous complications; some respond well to treatment and some do not and thus, everyone has different outcomes.

14. You’re sick, again??? Oh how dare I?! I do apologise for the inconvenience...

15. It’s just stress. People who are experiencing 'just stress' do not need opioid painkillers and cytotoxic drugs to get it under control.

16. No pain, no gain. Let's swap bodies for 24 hours then...

17. Are you sure you should be taking all these meds? Um, yes! Are you a doctor? No? Then please keep mum.

18. Can’t you just take an aspirin like everyone else? Er, no.

19. ‘These meds are very addictive’...the doctor says, shaking the tramadol bottle. ‘We don’t like to encourage their use.’ Doctor, would you like to swap bodies?

20. Stop being anti-social. I have lost many friends over the years because they thought that I was being anti-social. But I have learned that if friends treat you like that, then they are not real friends at all.

21. You need to be strong. We are strong, thank you very much. You would have to be strong to deal with a chronic illness; most people wouldn't last ten minutes if they were in our shoes. 

22. How can you be so tired when you’ve not done much? I don't know, why don't you ask Mr Lupus???

23.You're still ill? Um, yeah, that's the whole 'chronic' part of my illness...

24.You just need to lose weight. My weight has not caused my illness, it’s caused by my illness and medication. And besides, stop blaming me for getting sick!

25. “Well, she doesn’t look disabled…” when parking in the disabled parking bay with your legit blue badge, which is rightfully yours. See # 1 above. 


If you have any comments or suggestions, please share with me