What NOT to Say to Chronically Ill People.
Sometimes us with COPD find it hard getting others to recognize we have a disabling, chronic illness. A recent photo of myself taken by my wife Lynne has me looking very fit. With no oxygen cannula I look the picture of health. Even though around my shoulder is an oxygen concentrator.
But You Look Fine
Often I am told 'You look so well'. Others have heard 'You must be getting better as you look good'. Not realizing that many with a progressive illness hide their illness and put on a face. Even though inside feeling ill. I too am often guilty of this.
Not everyone with lung illness uses oxygen. Even so the illness can be just as disabling for many, the reason we are provided badges allowing us to park in a disabled spot. It is amazing how many chronically ill people have been shouted at. Told they have no right to park in a disabled spot. Because no doubt the driver could stand on two legs and walk a short way. Even though suffering discomfort and shortness of breath. Equally hurtful is comments we sometimes get from friends and family.
Why can't you go with us? You look fine to me. You need more exercise. You are just lazy. Are all comments that have been made from well meaning family. Many comments leave the sufferer in floods of tears. My appeal to all family with a member suffering as I do from COPD is – please think what you are saying and have compassion before you say something. It is NOT all in our mind. Thinking positive will NOT make us get better. We do NOT put it on for sympathy.
Some misinformed have offered the advice, 'Don't worry your lungs will regrow - so you'll soon be better'. Sadly lungs do not recover. 'Just lose weight and you will feel better', is other friendly advice. Some, myself included battle a weight problem as we cannot exercise much so cannot lose weight even though we eat little.
Oxygen Gives You Energy, So Why Are You So Tired?
Another quote made to a friend with COPD was 'I heard being on oxygen really gives you a boost of energy, why are you so tired? The myths around oxygen are vast. One of the reasons why there are companies out there selling canned oxygen to fit people promising it will boost just about anything. It doesn't so please do not waste your money.
When I was first prescribed oxygen my wife fell into the oxygen trap. Believing that now I had prescribed oxygen I would not get breathless and could resume normal activities. I still get breathless, although oxygen ensures my blood saturation levels do not fall enough to put my heart health at risk.
A friend with severe COPD on Facebook told a girl in a jeans shop she was puffed trying on a pair of jeans, and explained she had COPD. The girl replied, 'Oh well, at least you can still wear lipstick. That kinda floored her.
It's All Because of Smoking
One of the most commonly reported accusation made to us with COPD is, 'It's your own fault for smoking'. Even though not all COPD is caused by smoking. Childhood illness, working with chemicals, pollution, a faulty gene, there are many reasons why someone could have COPD. And with millions of not yet diagnosed cases of COPD, the accuser could themselves have COPD without knowing.
Neither does it help when a friend proclaims 'If I had what you have, I would kill myself'.
There are thousands of equally thoughtless comments made to us who have a chronic illness made each week of the year. To those with a family member or friend with chronic illness please think what you say. Because while hopefully not, there may be a day when you could be at the receiving end. Treat every person with illness the same way as you would want to be treated yourself.
Till I write again remember to keep that smile but most of all, Breathe Easy.
Do you find it difficult to enjoy the holidays with COPD?