Diabetes and mental health

Diabetes is relentless in a way that few conditions are. It does not come in episodes between which it can be forgotten; it asks something of a person at every meal, every illness, every holiday and every night, indefinitely. That has psychological consequences, and they are recognised clinical territory rather than a question of character.

It is worth disposing of the usual framing first, because it does damage. Attitude does not prevent complications. Nobody develops retinopathy or kidney disease because they were insufficiently positive, and nobody avoids them by courage. Treating diabetes outcomes as a measure of willpower is false, and it is one of the better-documented reasons people stop going to appointments — which then does affect outcomes, by the ordinary route of care not happening.

Diabetes distress

Diabetes distress is the specific, named experience of being worn down by the demands of the condition. It is very common, affects people with either type, and is somewhat more common among those using insulin.

It is not depression, and the distinction matters: distress attaches to the diabetes rather than to everything, and it comes and goes. The commonest triggers are fear of future complications, and the feeling that management has slipped out of control.

What it tends to look like:

• Anger and frustration at the whole business of managing it.
• Worrying about not looking after it well enough, without feeling able to do anything differently.
• Avoiding glucose checks, or appointments, because of what they might show.
• Feeling alone with it, including among people who are sympathetic but do not understand it.

That third one is worth dwelling on, because it is so often read as not caring. Avoiding a check is usually the opposite: it is caring a great deal and not wanting to see the number.

Diabetes burnout

Where distress continues without being addressed, it can become burnout — the point at which someone stops doing the management altogether: not checking, skipping insulin or tablets, disengaging from appointments. People describe it as hitting a wall.

Two things need saying about it. It happens to conscientious people, often after years of doing everything asked of them. And it is dangerous, particularly in type 1 diabetes, where skipped insulin leads to ketoacidosis rather than merely to a higher reading.

Burnout is a reason to tell the diabetes team, and the thing most likely to prevent that is the expectation of being told off. A good team treats it as a clinical problem to be solved, because that is what it is.

Depression and anxiety

Depression and anxiety are substantially more common in people with diabetes than in people without it, and the relationship runs in both directions: having diabetes raises the risk, and being depressed makes the daily work of managing it considerably harder. The second half tends to be left out, which is why low mood in someone with diabetes is so often treated as a motivation problem instead.

Both are treatable, by the same routes as for anyone else. In England, NHS talking therapies can be referred to directly, without a GP appointment and without a diagnosis; elsewhere in the UK the route is through a GP. Mental health sets out both, along with the crisis lines, and cognitive behavioural therapy and the first therapy session cover what treatment involves.

Fear of hypoglycaemia

This one is specific to diabetes and rarely discussed. A frightening hypo — particularly one that happened in public, at the wheel, or in sleep — can leave someone so wary of it recurring that they deliberately run their glucose higher than advised, and resist every suggestion of tightening control.

That is an entirely rational response to having been frightened, and it has its own long-term cost. It is also treatable: there are structured approaches to restoring confidence, and sometimes the right answer is a glucose sensor with alarms, which changes the problem rather than requiring the person to be braver about it.

Eating problems

Diabetes puts food under permanent scrutiny — weighed, counted, calculated and discussed at every appointment — and that is a difficult environment for anyone with a complicated relationship with eating.

Eating disorders are more common in people with type 1 diabetes than in the general population, and in that setting they can involve the insulin itself. It is serious, it is well recognised by specialists, and it is something people conceal for a long time out of shame.

Anyone in that position is not an unusual case and not a difficult patient. Specialist help exists, both diabetes teams and eating disorder services see it, and raising it is the thing that changes it. The National Alliance for Eating Disorders helpline is a route for anyone who would rather start outside the NHS.

The first weeks after a diagnosis

A new diagnosis of a lifelong condition produces something close to grief, and people are often surprised by it because they expected to feel relieved at having an explanation. Shock, anger, a sense of unfairness, and a period of not quite believing it are all ordinary. So is the opposite — managing briskly for several months and then being hit by it later.

For parents of a newly diagnosed child there is usually also guilt, and it is misplaced. Type 1 diabetes is not caused by anything a parent did, as set out under risk factors for diabetes.

What actually helps

The language. Describing a reading as high or low rather than good or bad sounds like a small thing and is not. A number is information about what to do next; it is not a grade. The same applies to "non-compliant", "control" and "cheating", all of which have been quietly retired from good practice for the same reason.

Realistic targets rather than perfect ones. Nobody keeps glucose in range all the time, including people who are doing everything well, and expecting to produces a daily experience of failure.

A negotiated break instead of a silent one. Easing a target or checking less often for a period is sometimes a sensible thing to do — but done with the team rather than by quietly stopping, which is how a break becomes burnout.

Other people with diabetes. Peer support does something that clinical support cannot, which is to make the experience ordinary. Diabetes UK runs a helpline and local groups, and the online forums are long-established.

A structured education course. Worth mentioning here as well as in the clinical articles, because the effect is partly psychological: understanding why the numbers do what they do converts an unpredictable condition into a manageable one.

It is owed, not a favour

Emotional and psychological support is one of the fifteen things a person with diabetes should expect every year in UK care. It is also the one most often missing — well documented, repeatedly raised by Diabetes UK, and still patchy.

Which means asking for it is not asking for a favour. The diabetes team can refer to psychological services, and some specialist diabetes services have a psychologist attached. A GP is the other route, as is self-referral where that applies.

Carers and family members are worth a mention too: living with someone else's diabetes, particularly a child's, carries its own strain, and the support available is not only for the person with the diagnosis.

See also living with diabetes and diabetes for the rest of this section.