The slogan of people with visible disability is “See the person, not the disability.” When it’s invisible illness it’s important to “See the person, acknowledge the disability.”
If you’ve survived Part 1, here is Part 2 of my rant on the Top 7 Offensive Things people have said to me about my illness.
4. Look on the bright side
Yes I know children are starving in Africa and I should be grateful that at least I have [ type consolation here … ]
Call me harsh, but surely it's up to me to pipe up with the "there are people who are worse off' line? I am indeed genuinely grateful for everything I have. The more I lose, the more gratitude I discover. But it is zero consolation when someone else points this out. I can point it out to myself thanks very much.
A variation on ‘there are people worse off’ is ‘everyone has something to deal with’ and ‘things happen for a reason’. If that’s what you believe, fine. But don’t insult the sick person who is struggling to get through every day and wondering whether it is all worthwhile, by triviliasing their illness and telling them to look on the bright side.
5. Uninformed advice
The best advice I receive is informed advice that takes into account the long journey I've been on. The worst advice is uninformed, ignores where I've been and assumes there is a quick fix to my condition that I stupidly haven’t considered.
Those remaining in my life know I’m an encyclopedia of digestive illness and loathe being patronised by people with so-called good intentions. So beware if you read an article in a women’s magazine about Yakult and feel the need to insist that I try it, because the odds are I’m streets ahead of you. At least engage in my journey for a nano-second and take the time to ask 'have you tried it?"
Don’t get me wrong, if there's something I haven't considered I DO want to know about it and will be forever grateful if you stumble across the Silver Bullet I haven’t. However context is everything and the proverbial road to hell is paved with good intentions. It seems that others want to wash away the discomfort they feel around your illness by offering a quick fix so they can feel like they've cared - and move on. If they really wanted to help, they would stop and ask.
6. Try to Relax / Meditate
Like Forrest Gump and his box of chocolates, people with digestive illness never know what they’re going to get. The end result is that our days are often a physical and mental roller coaster that follows the digestion of our food. Each twist and turn must be deftly negotiated or we crash. Add to this the unpredictable mood swings and fatigue that go with digestive illness and we often end up a mess.
There is nothing relaxing about life on a roller coaster or the financial, employment and relationship challenges it poses. Try meditating on a roller coaster and see how long you last. If you are a sick person who has managed to do this I applaud you, but it’s not possible for everyone.
Not Saying Offensive Things means feeling the person's pain without needing to fix, judge or run away. It doesn't mean you have to carry their pain, but do the person you love a favour and don't invalidate what they are feeling. It's hard enough to talk about the journey of invisible chronic illness in a world that thinks there is nothing wrong with you because you don't have a satisfactory label and look perfectly normal.
7. You don’t look sick
As they say in TV News: No Vision = No Story.
I have learned that no matter how often I try and explain my invisible illness, words cannot replace the appearance that I am well and coping. Nothing reinforced this like the YouTube farewell message from author Bryce Courtenay who looked and sounded remarkably well only a week before dying of stomach cancer.
Invisible illness has opened my eyes to the many lives of quiet desperation lived by seemingly normal people going through all manner of private hell. People with invisible illness live in a world that expects us to cope, so we do. We try to avoid unleashing too much of an emotional burden on our loved ones when there’s nothing they can do to fix us. We also fear that many relationships would not withstand the truth.
Yes we often seem well. That's because we choose to engage with others when we’re coping, not when we’re falling apart. Yet coping is not as easy as we make it look. Should we have to collapse in a screaming heap to have our limitations taken seriously? No. It would be embarrassing for us, awkward for those involved and serve no purpose whatsoever.
Yet when we do tell how it is, our reality is so often deflected in the form of uninformed advice, look on the bright side, an invitation to dinner or to go and get laid (!) Not to mention those who simply disappear. In the face of this we have little choice but to stay silent or isolate ourselves from those who have proven unable to listen and unwilling to ask.
The people I'm most grateful for are those who accept me the way I (now) am without making a fuss. They don’t judge me, try to fix me up or ask me to do things I can’t enjoy. Common to these relationships is mutual respect of boundaries. They respect my independence, remember my limitations and check in occasionally to let me know they care. In turn I respect that they have busy lives, avoid burdening them overly with my illness and don’t expect them to fix my problems.
Advice for friends partners & family?
The next time you feel like telling a chronically ill person that they seem fine, phrase it in a way that acknowledges how they say they are, not just what they look like. Acknowledge the inner daily battle they endure.
“You seem fine, you do a fantastic job of coping.”
“You look well, you are doing a great job of holding it together.”
“You seem fine, so please tell me if I can help because I would like to.”
The sick person will then have space to respond “Well there are worse things / everyone has something to deal with / things happen for a reason etc - if they want to.
The best advice I can give to friends, partners and family to support a loved one with a frustrating invisible illness is to deal with your own emotions first. Fix yourself up before you start on them. If you don’t find a place for your emotions, then you are likely to inadvertently dump them on your loved one. So whether it be powerlessness, grief, denial, martyrdom, resentment, rage, frustration, disbelief – acknowledge it and put it in a place where it won’t sabotage your relationship. If necessary get professional help or join a support group. Write a blog. But don’t inflict it on the sick person in your life.
Of course if someone takes advantage of your kindness, you may need to set boundaries. But most sick people know it’s their job to take care of themselves. We just want acceptance and a sympathetic ear occasionally.
How Not to Say Offensive Things - Part 1
If you’ve survived Part 1, here is Part 2 of my rant on the Top 7 Offensive Things people have said to me about my illness.
4. Look on the bright side
Yes I know children are starving in Africa and I should be grateful that at least I have [ type consolation here … ]
Call me harsh, but surely it's up to me to pipe up with the "there are people who are worse off' line? I am indeed genuinely grateful for everything I have. The more I lose, the more gratitude I discover. But it is zero consolation when someone else points this out. I can point it out to myself thanks very much.
A variation on ‘there are people worse off’ is ‘everyone has something to deal with’ and ‘things happen for a reason’. If that’s what you believe, fine. But don’t insult the sick person who is struggling to get through every day and wondering whether it is all worthwhile, by triviliasing their illness and telling them to look on the bright side.
5. Uninformed advice
The best advice I receive is informed advice that takes into account the long journey I've been on. The worst advice is uninformed, ignores where I've been and assumes there is a quick fix to my condition that I stupidly haven’t considered.
Those remaining in my life know I’m an encyclopedia of digestive illness and loathe being patronised by people with so-called good intentions. So beware if you read an article in a women’s magazine about Yakult and feel the need to insist that I try it, because the odds are I’m streets ahead of you. At least engage in my journey for a nano-second and take the time to ask 'have you tried it?"
Don’t get me wrong, if there's something I haven't considered I DO want to know about it and will be forever grateful if you stumble across the Silver Bullet I haven’t. However context is everything and the proverbial road to hell is paved with good intentions. It seems that others want to wash away the discomfort they feel around your illness by offering a quick fix so they can feel like they've cared - and move on. If they really wanted to help, they would stop and ask.
6. Try to Relax / Meditate
Like Forrest Gump and his box of chocolates, people with digestive illness never know what they’re going to get. The end result is that our days are often a physical and mental roller coaster that follows the digestion of our food. Each twist and turn must be deftly negotiated or we crash. Add to this the unpredictable mood swings and fatigue that go with digestive illness and we often end up a mess.
There is nothing relaxing about life on a roller coaster or the financial, employment and relationship challenges it poses. Try meditating on a roller coaster and see how long you last. If you are a sick person who has managed to do this I applaud you, but it’s not possible for everyone.
Not Saying Offensive Things means feeling the person's pain without needing to fix, judge or run away. It doesn't mean you have to carry their pain, but do the person you love a favour and don't invalidate what they are feeling. It's hard enough to talk about the journey of invisible chronic illness in a world that thinks there is nothing wrong with you because you don't have a satisfactory label and look perfectly normal.
7. You don’t look sick
As they say in TV News: No Vision = No Story.
I have learned that no matter how often I try and explain my invisible illness, words cannot replace the appearance that I am well and coping. Nothing reinforced this like the YouTube farewell message from author Bryce Courtenay who looked and sounded remarkably well only a week before dying of stomach cancer.
Invisible illness has opened my eyes to the many lives of quiet desperation lived by seemingly normal people going through all manner of private hell. People with invisible illness live in a world that expects us to cope, so we do. We try to avoid unleashing too much of an emotional burden on our loved ones when there’s nothing they can do to fix us. We also fear that many relationships would not withstand the truth.
Yes we often seem well. That's because we choose to engage with others when we’re coping, not when we’re falling apart. Yet coping is not as easy as we make it look. Should we have to collapse in a screaming heap to have our limitations taken seriously? No. It would be embarrassing for us, awkward for those involved and serve no purpose whatsoever.
Yet when we do tell how it is, our reality is so often deflected in the form of uninformed advice, look on the bright side, an invitation to dinner or to go and get laid (!) Not to mention those who simply disappear. In the face of this we have little choice but to stay silent or isolate ourselves from those who have proven unable to listen and unwilling to ask.
The people I'm most grateful for are those who accept me the way I (now) am without making a fuss. They don’t judge me, try to fix me up or ask me to do things I can’t enjoy. Common to these relationships is mutual respect of boundaries. They respect my independence, remember my limitations and check in occasionally to let me know they care. In turn I respect that they have busy lives, avoid burdening them overly with my illness and don’t expect them to fix my problems.
Advice for friends partners & family?
The next time you feel like telling a chronically ill person that they seem fine, phrase it in a way that acknowledges how they say they are, not just what they look like. Acknowledge the inner daily battle they endure.
“You seem fine, you do a fantastic job of coping.”
“You look well, you are doing a great job of holding it together.”
“You seem fine, so please tell me if I can help because I would like to.”
The sick person will then have space to respond “Well there are worse things / everyone has something to deal with / things happen for a reason etc - if they want to.
The best advice I can give to friends, partners and family to support a loved one with a frustrating invisible illness is to deal with your own emotions first. Fix yourself up before you start on them. If you don’t find a place for your emotions, then you are likely to inadvertently dump them on your loved one. So whether it be powerlessness, grief, denial, martyrdom, resentment, rage, frustration, disbelief – acknowledge it and put it in a place where it won’t sabotage your relationship. If necessary get professional help or join a support group. Write a blog. But don’t inflict it on the sick person in your life.
Of course if someone takes advantage of your kindness, you may need to set boundaries. But most sick people know it’s their job to take care of themselves. We just want acceptance and a sympathetic ear occasionally.
How Not to Say Offensive Things - Part 1
I used to think the
worst thing in life was to end up all alone.
It’s not.
The worst thing in
life is to end up with people who make you feel all alone.
Robin Williams
1 comment:
When you are sick, almost everything irritates. I blame the sickness, and try to be forgiving to the people who dont understand it.
Some health professionals should really know better though. I filed an application for a gastroscopy procedure with a local hospital, and one week later they send me a rejection letter saying my referring doctor didnt fill the paperwork properly!
First, the paperwork was fine and clear as day, I saw it myself. But more importantly, couldnt they tell me when I filed it that something was wrong? Or called me the next day on the phone number I provided?? A generic rejection letter one week later is all I get, for a sick person who is racing against time to treat a serious condition.
I dont know what to call it, insensitive, incompetent, just dont give a shit? All of the above?
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