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 inspired this 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.
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 journey we with chronic illness navigate.
Friends are those rare people who ask how you are
and then wait for the answer.
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
In her article Why Do People Give Unwanted Advice Sara Staggs observes You cannot give advice and receive another person’s story at the same time. You just can’t.
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 for me like the YouTube farewell message from author Bryce Courtenay who looked and sounded remarkably well only a week before dying of stomach cancer.
Indeed 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 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.”
So 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.
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.
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 timetable and large print user-guide. 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 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.
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.
I used to think the worst thing in life was to end up all alone.
The worst thing in life is to end up with people who make you feel all alone.
If you enjoyed this post you might also enjoy Get Better or Get Out: how to support someone with chronic illness.
Categories: fecal microbiota transplant