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.
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
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
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.
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
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
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 &
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
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
worst thing in life was to end up all alone.
life is to end up with people who make you feel all alone.