How Not to Say Offensive Things - Part 1

I recently discovered an article by Psychologist Tamara McClintock Greenberg on Providing Support: How To Talk About Illness  and chuckled as I read her concluding advice "Be present and try not to say offensive things".  Her article immediately inspired a rant on the Top 7 Offensive Things people have said to me about my illness.

1. Come out to dinner, we just want you to feel included

At the top of my list of offensive things to say to someone with major digestive illness is "Come out to dinner we just want you to feel included."  Yeah right. I really feel included sitting there exercising supreme self-control watching you gorge yourselves while I eat a lettuce leaf.

You wouldn’t ask a person in a wheelchair to dance without considering their limitation. Why ask someone with digestive illness to a meal without considering theirs?  Sure, some will appreciate the invitation and only require minor modifications to their meal or venue, but for others the Russian Roulette of food intolerances, the temptation of foods that will end in disaster and the need to constantly explain themselves or inconvenience others may be something they prefer to avoid. The only way to know, is to ask.

There are so many things people can do together, and so many ways to stay in touch. If you want someone with major dietary limitations to feel included why not choose something that doesn’t involve food.  Dining out is not a spectator sport.

2. Go find a Man

An amusing variation on "Come out to Dinner" is “Why don't you start dating / go and get laid ". I kid you not. These comments were unleashed on me by close girlfriends in circumstances where I had repeatedly told them how I was struggling with my health. Initially I accepted their invitations to go-find-a-man with good humour, until I realised they were indifferent to my protests as to why this was out of the question. 

Without TMI, suffice to say that every mucus membrane in my body has been affected by years of digestive illness, not to mention the affect this condition has had on my energy, hormones and mood. To suggest I am well enough to enjoy a bit of rumpy pumpy (possibly after enjoying a robust meal?) is as good as telling me that I'm a total hypochondriac.  Frankly, if that’s support then I can do without it.

It’s understandable that we with invisible illness and vague diagnosis will be doubted. What hurts is not being given the benefit of the doubt by those who say they care. It seems no matter how many times you tell some that you are (unfortunately) no longer the person you used to be, they still expect you to be that person. Most of us are already grieving for what we have lost - we don’t need to be reminded about it. 

3. Silence

One reader wrote:

No one ever said anything offensive to me, but rather had nothing to say and even just disappeared from my life.

I am exceedingly grateful for those who have stood by me. They don’t fuss, but nor do they ignore my illness and the affect it’s had on my life. They accept the new me. They regularly make the effort to pick up the phone or invest a minute in an email or text message to see how I’m going.

“How are you feeling?”
"Haven't heard from you for a while, are you still sick?"
"How's it going? Are you well enough to catch up?"
“No? Hey that’s tough. So what’s the latest?”
 “Hang in there!”

Any contact that acknowledges rather than invalidates my reality is welcome.

Anyone can be a good-time friend. But when the party's over the clean-up begins and the rubbish is put in a bag and thrown out.  That's how relationships work and that's the relationship journey we with chronic illness navigate. 

Advice for friends partners & family?

If you are the person who has not walked away and has chosen to stay in the life of a person with chronic invisible illness, then I commend you for your loyalty.  But I also urge you to take responsibility for your choice. Otherwise you many end up burdened by a martyred sense of duty that is transparent, unsatisfying and unfair.

After all, there is no point hanging around to be indifferent or passive aggressive, pouring salt on a wound and inflicting a slow cruel death on the relationship anyway. No one is served.  If you choose to continue the relationship you must know your limits, boundaries and how much that person is worth to you.  You may be in for a long haul.  Chronic illness is not for wimps. 

If you’re still determined to stay, here’s my advice.  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.”

DO show concern and consideration, without making a fuss. Acknowledge the reality of your sick loved one’s life, don’t invalidate it. No one is saying you have to be a doormat, but don’t make things worse for your loved one by ignoring the limitations their illness imposes.

DON’T make their illness bigger than it is either. Leave space for them to talk about it, but don’t force it. Don’t embarrass them in front of others by drawing attention to their special needs or expecting their illness to come with a large print user-guide and calendar. Don’t make your loved one feel bad for being sick.  Beware the passive aggressive eye-roll and the pregnant pause.

DO quietly get on with what has to be done to accommodate the unwelcome visitor in both your lives and DO take responsibility for your emotions. There is a limit to what you can do for a sick loved one and this can be very hard to accept. DO seek support outside the relationship if you need it.

Most importantly DON’T kid yourself that you mean well or are just trying to help if what you’re offering is not what the sick person wants or needs.  DON'T put your loved one in a situation where on top of everything else they are dealing with, they must humour your good intentions. To do so is to indulge in an act of gratuitous self-stimulation along the lines of “this feels so good for me it must be good for you too”.

By now you are thinking "Well Tracy, err… you’re rather harsh. Everyone's different - how am I supposed to know what someone else needs to feel supported?” Well err.. just ask, listen and remember rather than assuming, dismissing and forgetting.  It’s quite simple really.

How Not to Say Offensive Things - Part 2

              Friends are those rare people who ask how you are and then wait for the answer.
                                                              Author Unknown

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