When the Illness Takes Someone You Love

Somebody at work asked what happened, and you heard yourself give the short version. The one that leaves out the fifteen years.

Then you went and sat in your car for a while.

This grief has a shape of its own

I have sat with a good many bereaved people over fifty-five years. The ones who lost someone to a psychiatric illness are carrying something with a different structure, and almost nothing written about grief is written for them.

Three things make it its own thing.

You had been losing them for years. The person who died in April was not the person you grew up with, and that person had gone some time earlier, in stages, with recoveries in between that made you hope each time. Every one of those stages was a bereavement, and not one of them was recognized as such by anybody around you. There is no card for the version of your sister who was funny.

The relief is real and it is unbearable. Some part of you is no longer waiting for the telephone at two in the morning. Feeling that does not mean you wanted them gone. It means you have been on watch for a decade and the watch has ended, and a body will register that whatever the heart thinks about it.

And the death is difficult to say out loud. Cancer is sayable. This is not, not yet, not in most rooms. So you find yourself managing other people’s discomfort in the middle of your own catastrophe, editing the story for their benefit while they offer you condolences.

A death from psychiatric illness arrives with a silence attached, and the silence is not neutral. It quietly informs the family that this loss is not the same class of loss, which is a lie, and an expensive one.

The guilt is nearly universal and nearly always wrong

You are running the ledger. The call you did not return. The hospital you did not push harder about. The last conversation, which was about something trivial, because you did not know it was the last.

I would like to say something plainly, and I am aware that it will not be believed on first reading.

You were not the treatment. You could not have been. Families are asked to do something no family is equipped to do. They hold a serious illness at home with no training, no shifts, and no relief. Afterward they audit their own performance as though they had been the clinical team.

Do not mistake me. I am not saying nothing could have gone differently. I am saying that the item at the top of your list, the one you return to at four in the morning, is almost certainly not the reason. You have selected it because it is the one thing you can still argue with.

A twin, and what I did not do

A woman came to me after losing her twin sister to bipolar depression. She had also carried her own seasonal lows for years, which is its own complication, because the illness that took her sister was not a stranger to her.

I did not offer her an interpretation. She had not come for one, and a man across a desk explaining her grief to her in the first month would have been an intrusion dressed as help.

What she needed was not a clever observation about survivor guilt. What she needed was a room containing other people who already knew what she was talking about, so that she could stop translating.

So I did the smaller and more useful thing. I brought her into the support group I have run for many years, and I let her sit in it and say nothing for as long as she wanted.

She described what she found there as community, and she is right that it is the active ingredient. Being among people to whom you do not have to explain why this death is complicated does more in an evening than I can do in a month of private conversation.

What actually helps, in order

Say the true version out loud to somebody, once. Not to everybody. One person who can hear it without flinching, and it does not have to be family. Family are often the worst audience for this, because they are inside it.

Find the room. A bereavement group is good. A group where people understand psychiatric illness from the inside is better, and they are not hard to find.

Give it longer than you have been told. The public schedule for grief is roughly a year and it is a fiction. This kind runs longer, because you are grieving several losses in sequence and the earlier ones were never acknowledged when they happened.

And watch your own mood honestly, particularly if the illness runs in the family. Grief and depression are not the same and they can share a house. That is worth having a professional eye on rather than deciding alone.

What the first session looks like

I will ask you to tell me about them, not only about the death. Who they were before, what they were like at twenty, what was funny about them. That surprises people who arrive braced to discuss the end.

I will ask what you have been able to say to whom, because the map of your silences tells me a great deal about where you are actually stuck.

I will not hurry you toward acceptance. There is no schedule and I have no interest in imposing one.

An Invitation

If you lost somebody to an illness that other people find difficult to name, you have been doing two jobs. Grieving, and managing everyone else’s discomfort about how they died.

You are allowed to put the second job down.