But you don't look sick . . .

17:00, May 24 2014
Chronic fatigue
CHRONICALLY UNWELL: 'Invisible' illnesses, such as chronic fatigue syndrome, seem to bring out ill-considered remarks from others.

Shabnam Dastgheib investigates the painful, frustrating reality of living with chronic illness.

For those with a chronic illness, managing medication, exercise, diet and health outcomes is often combined with managing other people's expectations and well-intentioned suggestions.

A titbit of misguided advice or a cheerful, "things aren't all bad" can be infuriating for those who may be at their lowest. Those who suffer from chronic illness say people trying their hardest to say the right thing can often end up making hurtful comments, making life more complicated and, in general, frustrating an already frustrated situation.

So what is hurtful? What shouldn't be said and why can it be so insulting?


"You don't look like you have arthritis" or "you look too young to have it"


Dunedin man Glen McSkimming is a champion triathlete and has completed 15 ironman triathlons. He also manages a form of arthritis which requires fortnightly injections to control painful flare-ups.

"It's frustrating, one day I can easily run 10km and the next I can't even bend over to put on my shoes. To look at me, you couldn't tell but a bad flare-up is right off the pain scale and can last for over a month."

He said he wished the people who didn't believe his condition could see him during a flare-up. "You can have basically no symptoms at all and can manage everyday tasks with ease. Then when it flares up you can't even put your shoes on or walk across the road without severe pain."

Arthritis New Zealand says for the 530,000 New Zealanders living with the illness, insensitive remarks can show a lack of understanding and trivialise a painful condition.


"Exercise gives you endorphins"

A 30-year-old Auckland woman with depression who declined to be named said this was one of the most insulting things people said to her on a regular basis. "Often the reality is that you're just trying to get through the day so that it will finish. You're already facing a challenge which is that your brain chemistry is not responding properly to any good things. It may not last forever but when you're in it, it definitely feels like it will, so it's really demoralising."

She said if people thought about that they wouldn't make such suggestions. "It's weird because for some people coming out of depression they might be fine with this sort of comment. People's experiences are so different. But if you're in the middle of a bad time it will just make you feel alienated."

She also said people telling her, "try helping someone else, that will make you feel better" was quite patronising as it implied she was selfish and self-absorbed. "You probably are a bit self-absorbed at that time if you've just been or are currently depressed, but this makes sense because it's a horrible and quite lonely experience to go through."


"I know just how you feel, I get tired too"

Auckland woman Vicky Rawhiti-Forbes suffers from chronic fatigue syndrome as well as fibromyalgia - widespread and chronic pain. When she runs out of energy she has to use a cane or have her husband carry her.

"The pain means I can't cope with a lot of situations and have to modify things other people take for granted. Sometimes I might need to sit down in the shower, or lay down halfway through making dinner."

She said people trying to connect with her could be incredibly patronising. "I see you functioning completely normally, working fulltime, socialising. I didn't know just how bad chronic pain could hurt, or what it feels like to drag your body around because you don't have enough energy to walk, before I got sick."

She said people also often told her: "It's all in your head", and technically that was true but felt invalidating. "Something has gone wrong in my brain, it's sending all these pain signals out for no clear reason. However, I can't just flip a switch."


"But you could do it yesterday? Why not today?"

Diagnosed with Parkinson's disease in his mid-30s, Auckland man Andrew Johnson has dealt with many well-intentioned and not so well-intentioned remarks. He said people didn't understand that his condition was incredibly changeable. "You try to explain that Parkinson's is one of those diseases where it is a constantly shifting battleground. What might be true for you one day might not be true the next."

He said he might be able to pick up his coffee in the morning without shaking but that might not be true later in the day.

Johnson said a little human kindness and a desire to learn and understand his condition would go a long way. "If people just . . . stopped and thought instead of commenting . . . I think understanding and education is massively important."


‘‘You can have a little bit’’

Type 2 diabetic Ruth Davy has managed her condition for the past six years with diet, medication and exercise.

‘‘People say ‘but you’re not obese, you must have made a mistake’.’’

She said people often encouraged her to have a drink, a treat or gave her chocolate as presents. ‘‘People just don’t believe it. Because I don’t look like their image of a person with diabetes.  That’s challenging because you do then have a little bit.’’

Davy said there were also those who told her off for having a treat and this was equally exasperating.

A better approach would be to ask the person how diabetes affected them, she said.

‘‘The person with diabetes usually knows quite a bit and they just need support, they need to be told ‘oh gosh it’s hard’ and don’t go giving us chocolates."

Sunday Star Times