When you have a chronic illness, people say puzzling, vaguely inappropriate things all the time.
Since developing an autoinflammatory disease two years ago, I’ve learned there are endless suggestions of natural “remedies” for my incurable condition: “My neighbour’s cousin went vegan, and she’s never been better!”
There’s a great deal of confusion about what my condition actually is: “My IBS is basically the same as your Crohn’s disease, right?” And, of course, there’s a smattering of minimising, dressed up as compliments: “You look great – you’re obviously not that sick!”
But despite all the ways people put their proverbial feet in it, the response that bothers me most is silence. Radio silence, sometimes from long-term friends or relatives – people who already know I’ve been on a merry-go-round of surgeries and drug infusions – but haven’t once asked after my health.
I’m not after lashings of sympathy. I don’t require flowers or a gold medal for being Endlessly Ill. But when your life is turned upside down by a diagnosis – when your world shrinks to a tight schedule of hospital admissions, hardcore medications, restricted mobility and post-operative pain – an occasional acknowledgment can feel both comforting and validating.
Many people avoid mentioning someone’s condition because they don’t want to intrude, or don’t know what to say. But psychotherapist Sophie Boord says “silence can be incredibly hurtful and invalidating”. Boord’s Victoria-based practice specialises in chronic pain and chronic illness, and she has experienced long Covid and chronic fatigue syndrome herself.
To ask after someone’s chronic illness, you may need to set your own discomfort aside. But there are a few simple ways to get started.
Remember being ill can feel isolating
It’s easy for a chronically ill person to interpret silence in a negative way, Boord says. “People end up thinking their colleagues, friends or family don’t believe them, don’t understand them or that they just don’t care.”
Keep in mind that people with invisible chronic illnesses – which can range from endometriosis to fibromyalgia and lupus, to digestive disorders, multiple sclerosis and rheumatoid arthritis – may have lived with illness for months or years before being correctly diagnosed.
Many of us have been told our symptoms are “all in your head”. Case in point: my symptoms were originally dismissed as stress-related pelvic pain, until a specialist discovered an egg-sized abscess that required emergency surgery.
In everyday life, us invisibly ill folk are often expected to explain our illnesses to justify our accessibility needs, and we’re routinely disbelieved or suspected of exaggeration. In short: chronic illness can feel incredibly isolating. By failing to acknowledge a friend or family member’s condition, you may be inadvertently pressing on that wound.
And in the case of a stigmatised illness like mine – a form of inflammatory bowel disease – the assumption that I don’t want to discuss it can feel like my sickness is somehow private and therefore shameful.
In this way, silence from friends and relatives “can reinforce stigma, which is so hard at a time when people really need connection and support”, says Boord.
You can check in respectfully
Bronwyn Bickle, a counsellor at Floraison Mental Health in Mount Barker, South Australia, who also lives with chronic illness, says some people believe health is a private issue, so choose not to raise the topic out of respect. “This may also include the assumption that if you want them to know about your health, you will tell them,” she says.
Boord agrees: “Some people are afraid to ask about it or acknowledge it because they don’t want to cause more upset by bringing it up.”
But it’s absolutely possible to ask after someone’s health non-intrusively.
Personally, I appreciate a simple “how’s your health?” once in a while, about as often as you might ask after someone’s family, for example.
A caveat: it’s true that some folks with chronic conditions want to keep their health status quiet. Some fear stigma and discrimination; worry that others may define them by their illness; or are still privately processing what it means to be chronically ill.
But if someone has told you about their condition, discussed it in your presence or openly disclosed it (say, on social media), you can – and, I think, should – inquire about their health from time to time.
This isn’t just reserved for close friends, either: in my view, it’s fine (and actually polite) for a colleague, neighbour or acquaintance to ask after someone’s health, just as you’d check in after a broken arm.
What to say and when
It’s always up to a chronically ill individual whether, and to whom, they want to disclose their condition. It’s best to avoid asking after someone’s health in group settings, for instance, unless they have raised the topic in that setting first.
Also: “It may be helpful to leave room for the chronically ill person to choose how much – if any – detail they give you,” says Bickle.
So there’s no need to ask a laundry list of questions about symptoms, or treatments.
Instead, Bickle says an acknowledgment is a good way to start. She suggests: “I know you have been unwell. I don’t know the details, but if you would like to share with me I would welcome the conversation.”
Or she suggests trying: “I would like to respect your privacy, but I also want to check-in to see how your health has been lately. Is this something you feel comfortable discussing with me?”
Boord says you can ask: “Would you like to talk about your [chronic illness]? Because I’ve been thinking about you and I care about you; I’d like to understand better what it means for you and if there’s anything I can do to help.”
Or just: “You know you can talk about your [chronic illness] with me if you want to – and if you don’t want to, that’s OK too.”
Your friend may shrug you off, but at least you’ve opened the floor for them to speak about their health later if they need.
Learning to listen
If someone does choose to share details with you, “practising active listening and demonstrating respect for their experiences will ensure a conversation both parties can feel positively about,” Bickle says.
Remember, your friend probably doesn’t expect you to be an expert on chronic illness, and discussing it gets easier with practice.
“The more we talk about [chronic illness] the better,” Boord says. Almost half Australia’s population has experienced a chronic health condition. Normalising these conversations is an important part of reducing stigma and isolation, Boord says.
Even if you slip up and say the wrong thing, in my experience, it will still be an improvement on saying nothing at all.
Source: The Guardian