I’ve just seen the most heartbreaking image.
It was of a 10-year old boy with a tube in his nose sitting in a hospital bed. Next to him is his favourite teddy bear. Beside the bed, a vase of flowers and some cards.
The look on the boy’s face is one of absolute, uncomprehending misery. I have no idea who this boy is, but the look on his face affects me as though he were my own son.
This photo was posted just now, in one of the Facebook support groups I belong to for people living with IBD, by the boy’s mother. This poor kid has been in hospital for weeks, losing weight, losing blood, going through hell. He has just been diagnosed with IBD, on top of a bunch of other conditions that have already made much of his young life an uphill struggle. The doctors are about to send him home.
His mother sounds beside herself with worry and grief. The boy’s sad eyes are aimed directly at her as if to say “what’s happening mum, why does my tummy hurt so much, why do I have to feel this way?”
What can she say to him? What is there to say?
Sometimes life is cruel and unfair? Sometimes people spend their whole lives struggling? That isn’t going to help, even if it’s true. What can she say to him, other than that she loves him, and will always look out for him, and will devote every last ounce of energy she has to putting a smile back in those young, innocent eyes.
The mother is posting this picture in the hopes that someone out there in the group will be able to help. The doctors have advised her that what her son most needs right now is to put on some weight. He is malnourished and weak, which puts him more at risk of developing further complications. He needs to eat whatever food he can tolerate, the doctors say. She wants to know what we think of this.
Of course, this mother is not just asking for our help and advice, she needs our support. She needs to feel that there is a community of people out there who can empathise with her. She needs to hear that this is not her fault. She needs to know that she is doing the best she can for her little boy.
Almost every comment on her photo is by a person who understands this need. The overwhelming response to her is one of sympathy and support. This is one of the most beautiful things about support groups: the outpouring of love you receive from complete strangers when you need it most.
Then there are some commenters who offer validation of the doctor’s advice. I see comments like “listen to your doctor”, and suggestions on certain supplements that could help this boy recover some weight, things like Ensure and Sustagen. Others talk about a low-fibre diet, or suggest things like the low-FODMAP or the GAPS diet, all of which have some degree of scientific evidence to back up their claim to be good diets for people with gut problems. These comments are not along the lines of “you should try this” or “you should try that.” Rather, the wording is gentle, supportive. “You might look into this,” “I found this diet helpful,” “This may be the easiest to tolerate,” Often accompanied by a link, to a credible source. So far, so good.
Then I saw a comment which so enraged me that I immediately opened up this document and began typing. It just read:
“No dairy. No gluten”
That was it. No note of support or sympathy. No suggestion of “I tried this and it helped me” or “here’s an article that makes a good case for cutting out these things”, or even “have you tested your son for lactose or gluten intolerance?”. Just a cold, unsubstantiated, commandment. “No dairy. No gluten”.
I was happy to see that someone else had immediately replied to this comment to challenge it. In a very sensibly worded response, this person had explained that not all people respond the same way to the same foods, and that cutting out gluten and dairy for no good reason may involve putting a restriction on some of the only foods that this boy still got any pleasure from eating. This wasn’t just the poster’s opinion, by the way, it also happens to be the scientific consensus.
I added my agreement to this comment, noting that what the boy most needed right now was his mother’s love and reassurance, which I was sure (I wrote) he was already getting, and that putting blanket restrictions on someone’s diet based on something written in a comment thread was rarely, if ever, a good idea.
But the arrogance and rudeness of that “no dairy, no gluten” post was still making my blood boil, and so I had to open up a Word doc and keep writing.
If I were the moderator of that Facebook group I would have sent the “no dairy. no gluten” poster a message letting her know that what she wrote wasn’t appropriate for that comment thread. I would have done it as kindly as possible, while shouting swear words at my desk to release my rage. But seeing as I’m not the moderator of the group, I’m writing my response here instead, in an open letter to you all.
The purpose of a support group – and the clue is in the name – is to support people.
Not to give out medical advice. Not to say “you’re doing this wrong”. Not to tell people what they should and shouldn’t do (another way of saying “you’re wrong”) and certainly not to prescribe dietary restrictions to a young boy you’ve never met, whose doctors have told him to eat whatever he can tolerate, to put back the 20% of his body weight he has lost.
“No dairy, no gluten” is another way of saying to this distraught mother “your doctors are wrong, they’re giving you bad advice, you’re wrong if you listen to them, you’re going to keep making your child miserable, this is your fault”. This is not support, it’s the exact opposite.
If this comment had been a one-off, then I doubt you’d be reading this piece from me right now. But if you’ve spent any time in support groups you’ll know it isn’t a one-off. A comment like this appears in just about every comment thread. Tersely worded. Devoid of emotion. Nothing to back it up except the poster’s own self-righteousness. “No dairy. No gluten”
If you’ve ever posted something like this in a support group, or if you’re still doing it, please stop now. It’s selfish, narcissistic, unsupportive and unhelpful.
For the rest of you, for the 99% who understand why people reach out in the first place, thank you for being there. You are a light that shines in the darkness. Keep doing what you’re doing.