Telling people, or not

The question that ambushes everybody

Almost nobody sees this one coming. You have spent weeks thinking about the medicine, the side effects, the cost, the appointment — and then you are standing in somebody’s kitchen and they ask a perfectly friendly question and you realise you have no policy.

I am Ada, and I have watched a lot of people be ambushed by this in the just-starting circle. So the first and most useful thing I can tell you is to decide something in advance, even a provisional something. Not because there is a right answer — there is emphatically not — but because deciding in the moment, while surprised, is how people end up telling someone they wish they had not told, or lying to someone they would rather not lie to.

The second thing: this is not a test of your integrity. Your medical information is yours. Choosing not to share it is not deceit, in the same way that not announcing your antidepressants at a wedding is not deceit. A lot of members carry guilt about privacy that they would never apply to any other prescription, and that guilt comes from the culture around this particular class of drug rather than from anything you have done.

The people you must tell

There is one genuine exception and it is a safety matter, not an honesty matter, so I am putting it before everything else.

Anyone providing you with medical care needs to know. Your GP, obviously, and any other prescriber, because of interactions — particularly if you take insulin or a sulfonylurea, where the combination changes hypoglycaemia risk.

But the one people miss is procedures. These medicines slow gastric emptying, which means your stomach may not be empty after the standard fasting period before a general anaesthetic or a sedated procedure. Anaesthetic bodies have issued guidance on this precisely because it is a real aspiration risk, and the guidance has shifted more than once as they have learned more. Tell the anaesthetist. Tell the endoscopy unit. Tell the dentist doing anything with sedation. Tell them even if you assume it is on your record, because the record is often wrong, and tell them well before the day so that they can plan rather than cancel.

Members have arrived for procedures, mentioned it at the last minute, and been sent home. That is annoying. The alternative outcome is considerably worse than annoying. This one is not a personal choice.

What it costs to tell, and what it costs not to

Both have prices and members underestimate the second one.

Telling costs you control of the information. Once said, it is out, and people repeat things without malice. It invites commentary — advice, opinions, articles sent to you, and questions about your body from people who have no business asking. It can change how your effort is read at work, in ways that are unfair and difficult to name. And it hands some people a standing invitation to monitor you.

Not telling has its own costs, which surface later. You lose the ability to explain why you are eating differently, why you cancelled, why you were rough for three days after Thursday. You manage a small ongoing concealment, and small ongoing concealments are tiring in a way that is hard to notice until they stop. You may end up alone with something difficult. And a good number of members describe an unpleasant sting when a friend eventually finds out and asks, hurt, why they were not told.

Poppy put it well in circle: I did not want to be a project, and I did not want to be a secret, and it turned out those were the only two options on offer that year. Sometimes there is no comfortable answer. There is only the answer you can live with.

Work, which is its own country

My general position is: tell your employer nothing about the medicine, and tell them what you need in operational terms.

Employers do not need a diagnosis or a prescription list. They need to know that you have a medical thing that occasionally makes a particular day difficult, and what would help — a later start on Fridays, access to a bathroom without a scene, a break during a long meeting. Occupational health, where it exists, is the route for this and is usually confidential from your line manager in a way people do not realise.

Know your local ground before you disclose anything. Employment protections vary enormously by country and by whether the underlying condition is treated as a disability, and in some jurisdictions there are meaningful protections for a health condition that do not apply to a medication. Petra is the person to ask in insurance-appeals if this crosses into insurance territory, which it sometimes does.

The other work-specific issue is shift patterns. If your dose day is being wrecked by the rota, a conversation about the rota is usually easier to have than a conversation about the medicine — see sleep and shift work.

Family, friends, and people who will absolutely have opinions

The pattern in circle is that people worry about the wrong relationships. The colleague turns out to be fine. It is the close family member with strong views who becomes the long-running weather system.

A few things members use.

• A tiered decision. One or two people who know everything, a slightly wider group who know something health-related is going on, and everyone else who knows nothing. Most members land here eventually, and it works better if you choose it rather than drift into it.
• A prepared boring sentence. I am under the doctor for something and I would rather not go into it. Repeat verbatim. Do not elaborate. Elaboration is what opens the door.
• Deciding what you will do when it is passed on. It will be passed on. Deciding in advance that you will be annoyed and then let it go is much less costly than a family rupture, in most cases and not all.
• Naming the terms when you do tell. I am telling you because I want someone to know, and what I need is for you not to ask about my body or send me articles. People are generally better at this than we expect, if asked directly.

Regret runs in both directions

I want to end honestly rather than reassuringly, because a guide that is all reassurance is not worth reading.

Members regret telling. Mark told a large team, warmly, in a moment of feeling good about things, and spent the following year as a public exhibit — every meeting had a comment in it, and when he later paused the medicine because of side effects, that became a public event too. He would not do it again.

Members also regret not telling. Maryam kept it entirely private for eighteen months, through a genuinely difficult stretch, and describes the loneliness of it as the hardest part of the whole experience — harder than any symptom. She is now open with three friends and says it changed the texture of the year.

Both of those people made a sensible decision with the information they had. There is no version of this where you can know in advance. What you can do is make the decision deliberately, keep it revisable, and remember that you are allowed to change your mind in one direction, at least — you can always tell someone later, and you can never untell them.

If you want to think it through out loud, that is what the circles are for. Partners-and-family takes this question constantly.