Loss of health: when a diagnosis changes your whole future

“The doctor kept talking for another ten minutes. I only heard the first sentence.”

That is how someone once described the moment they were given a diagnosis. Afterwards he walked out of the surgery into the car park, and everything there was exactly as it had been half an hour earlier: cars, a patch of sky, a woman with a dog. The world had not stopped. What had stopped was something inside him — the sense that he knew what his life would look like in five or ten years. The prescription was in his pocket, the next appointment was booked, everything was in order. But nobody had told him what to do with the fact that his future had just fallen apart.

That is what this post is about. Not about illnesses, medication or treatments — those are your doctor’s decisions, and I will not be giving any medical advice here. It is about something that usually goes unsaid in the consulting room: that the loss of health is a real loss, and that we grieve it even though nobody has died.

A loss without a funeral

When someone close to us dies, grief has a shape. There is a funeral, there are condolences, there are a few weeks when people understand if you are not yourself. With a chronic illness there is none of that. The diagnosis arrives between two working days, and the people around you most often respond with one of two sentences: “You can live with that” and “The main thing is they caught it in time.” Both may well be true. Neither leaves any room for you to feel bad.

Professionals call this kind of grief disenfranchised grief — a loss that those around you do not recognise as a loss, so you are left alone with it. I wrote about it in The grief nobody acknowledges: miscarriage, divorce, losing a job, and illness belongs squarely in that category.

The data, too, show that this is not just “low mood”. In a large World Health Organization study covering more than 240,000 people in 60 countries, between 9 and 23 per cent of people with one or more chronic physical illnesses (depending on the illness) had depression, compared with around 3 per cent of people without them. The same study found that it was precisely the combination of illness and depression that damaged health the most — more than any illness on its own. The psychological side of illness, in other words, is not an add-on. It is part of the illness.

What a diagnosis takes away

When we say “loss of health”, we think of the body. But the body is rarely the only thing that is lost. A diagnosis spreads like a stone dropped in water, in rings we cannot even see at first.

Some of these losses are obvious. Someone who used to run may not run again. Someone who worked shifts may have to change jobs. Others are quieter, and we only notice them after months: that you can no longer say yes to an invitation without first working out whether you will manage; that friends stop asking you on hikes because “you can’t anyway”; that your partner is no longer only your partner but also, a little, your carer.

And then there is the future. Most of us carry a quiet picture of how things will be: where we will live, what we will do in retirement, what we will be like when we are old. That picture is so self-evident that we are not even aware of it — until a diagnosis tears it.

Grieving the self you used to be

In the 1980s the American sociologist Kathy Charmaz listened to people living with chronic illnesses and summed up their stories in a phrase that has stayed with us ever since: loss of self. She found that what hurt people most was not the pain itself, but watching their image of themselves crumble before their eyes. A restricted life, isolation, the feeling of being a burden to others, and often the experience of not being believed — all of it eroded what they had thought they were.

When I listen in therapy to people who have fallen ill, I often hear sentences in the past tense that are really about the present: “I was the one who could manage everything.” “I was someone you could rely on.” Behind these sentences lies not only grief for the body. It is grief for an identity — for who we were in our own eyes and in the eyes of others.

This is an unusual kind of grief, because the person you are grieving is still alive — inside you. And because you sometimes feel that with the right amount of effort you could bring them back. That is why people with a chronic illness often fight first: they work as hard as before, hide their exhaustion, say nothing at work. The fight is understandable. But it is often also a way of not feeling that something really is over.

When the story breaks off

The British sociologist Michael Bury described chronic illness as a biographical disruption. Each of us lives inside a story about ourselves — with a beginning, a middle and an expected continuation. Illness breaks that story off mid-sentence. What was taken for granted becomes uncertain, and a person has to rethink not only their everyday life but also who they are and where they are heading.

This idea is close to my heart, because it fits well with relational family therapy, in which I am training. The story about ourselves is never only ours. It is written in relationships — in what role I had in my family, who looked after whom, what was valued at home. Someone who was given the role of “the one who copes” in their family of origin will often experience illness as a betrayal of that role, not only as a physical problem. Someone who has always looked after others will find it hard to accept that they are now the one being looked after.

A break in the story is not necessarily the end. But it is the moment when the story has to be rewritten — and that does not happen in a single afternoon.

Oscillation instead of stages

People often expect to pass through neatly ordered stages: first shock, then anger, finally acceptance. Such stages are a popular picture, but they do not hold true for grief — there is more on that in The stages of grief are a myth. With chronic illness they fit even less, because the illness is not a one-off event. It changes, settles down and comes back.

A far more useful picture, to my mind, is the one proposed for grief by the Dutch researchers Margaret Stroebe and Henk Schut: the dual process model. According to it, after a loss we oscillate between two directions. In one, we deal with the loss itself — we cry, remember, feel angry. In the other, we deal with restoration — we learn new habits, try out new roles, and sometimes take a day when we do not think about the loss at all. The model was developed for bereavement, but it fits the loss of health remarkably well.

For many people this picture is a relief. It means there is nothing wrong if one week you are full of plans and the next you spend whole days in bed crying. It also means there is nothing wrong if you sometimes forget that you are ill and burst out laughing. The trouble only starts when someone gets stuck on one side: when they never allow themselves to grieve and simply keep functioning, or when they cannot move out of grief and experience everything new as a betrayal of the old.

Illness is never only yours

As a family therapist in training, I also look at illness through relationships. The American family therapist John Rolland described how a chronic illness enters a family like a new member: it demands space, time and attention, redistributes roles and often wakes up old stories about who looks after whom and who is allowed to be weak.

In a couple this often shows up as a silent misunderstanding. One is afraid, the other tries to be strong. One wants to talk about what lies ahead, the other would rather live as if nothing had changed. Both love, both try — and both end up alone. This is how such a conversation might sound (composite, not a real person):

“I don’t understand why you’re angry. I help you with everything.”
“I know. That’s exactly the problem. You help me with everything, as if I were already someone else.”
“So what am I supposed to do? Watch you struggle?”
“No. I’d like you to ask me sometimes how I am. Not what I need — how I am.”

There are two losses in this short exchange. He is grieving that he is no longer the one who helps. She is grieving that the husband she knew has become someone who needs protecting. When each carries the loss alone, a distance opens up between them. When they can put it into words together, the loss becomes something they share — and that is something quite different from a burden.

The same goes for children, parents and siblings. The map of people around you often changes after a diagnosis: some draw back because they do not know what to say, others surprise you with their closeness. It helps to actually draw that map at some point — the map of your support network tool was made for exactly this.

Chronic sorrow: waves that keep returning

After a death, grief usually loses its sharpness over time. With a chronic illness, though, the loss does not happen once. It happens with every new test result, with every thing you can no longer do, and at every celebration when you notice how things were last year. Researchers have used the term chronic sorrow for this: a sadness that is not constant but comes back in waves, often around milestones and comparisons.

Two things are worth knowing. First, chronic sorrow is not an illness and not a sign that you “haven’t accepted it”. It is a normal response to a loss that keeps going. Second, the waves can be anticipated. If you know the next check-up will knock you back, you can prepare support for it — someone to go with you, or an afternoon with nothing you have to do.

The acceptance we hear so much about is therefore not a point you reach and then stay at. It is more of a movement you return to again and again. In the knowledge base I described acceptance as a willingness to let something be as it is — not as agreeing that it is good. With illness this distinction is crucial. You do not have to be content with your diagnosis in order to live with it.

Exercise: two lists

This exercise will not change your diagnosis. But it can make your grief visible — and what is visible is easier to carry. Set aside half an hour and take a sheet of paper.

1. On the left-hand side, write what you have lost. Not only the physical things. The small ones too: your morning run, coffee without a second thought, the feeling of being invincible. Keep writing until it stops on its own.
2. Pause briefly at each item and say to yourself: “I am sorry this is gone.” Do not explain, do not console yourself. Simply acknowledge that there was something that is no longer there.
3. On the right-hand side, write what remains — what you can still do, who is still here, what still matters to you. Not as proof that “it isn’t so bad”, but as an inventory of what you can stand on.
4. Choose one thing from the left-hand side that you could keep in a different form. If you can no longer run, perhaps you can still walk in the woods at the same time of day. If you can no longer work full time, perhaps you can still pass something on to someone.
5. Show the lists to someone you trust, or bring them to a session with your therapist. Grief that someone sees is different from grief you carry alone.

If a lot of anger comes up during the exercise — at yourself, or at a body that has “betrayed you” — that is understandable. In those moments it helps to say to yourself what you would say to a friend in the same position. We call this self-compassion — and in illness it is not self-indulgence but a way of getting through.

When it is not (only) grief

I want to be honest here, because the idea of “grieving your health” can be turned against a person.

Not every diagnosis is a loss. For some people, a diagnosis after years of searching is above all a relief: their exhaustion or pain finally has a name, someone finally believes them. If what you mostly feel is relief, there is nothing wrong with you, and you do not need to go looking for a sadness that is not there.

Not every sadness is ordinary sadness. If for weeks you cannot enjoy anything, if you wake up with no reason to get out of bed, or if you think everyone would be better off without you, this is no longer just grief. As I described in After a major loss: when grief turns into depression, depression can appear alongside a physical illness as a separate problem that needs treating. Tell your doctor; they have both the right and the duty to take it seriously. I have written in more detail about when it is time for professional help in When a loss needs professional help.

If you are having thoughts of not wanting to live, reach out for help straight away. In Slovenia you can call the crisis line Klic v duševni stiski on 01 520 99 00 (every day from 7 pm to 7 am), the Samarijan helpline on 116 123 (24 hours a day) or, in an emergency, 112.

A psychological explanation is no substitute for treatment. Exhaustion, pain and low mood can also be a direct result of the illness or the medication. So talk them over with your doctor before you put them down to something “purely psychological”. And the other way round: if anyone tells you your illness is the result of unprocessed emotions, be careful. Explanations like that sound profound, but they often load people with guilt for an illness they never chose.

You do not have to grow. A great deal is written about how illness can enrich us. For some people that really does happen. But it is not an obligation, and it is not a measure of whether you have handled your illness “properly”. Sometimes it is enough to get through, and to have some good moments along the way.

What to remember

• The loss of health is a real loss — it makes sense to grieve it, even though nobody has died and even if those around you say “you can live with that”.
• A diagnosis takes away not only aspects of the body but also roles, spontaneity, the future and often part of your self-image.
• Adjusting is not a sequence of stages but an oscillation between grieving and rebuilding; both are healthy, and so are the breaks.
• Illness enters the whole system of relationships — partners and families each grieve in their own way, and it helps to put that into words together.
• If sadness turns into hopelessness or thoughts of death, it is no longer only grief: seek help from your doctor or a crisis line.