4 Losses We Mourn With Chronic Illness

The grief of chronic illness extends beyond grief over the loss of our health. We mourn the loss of our place in the world.

Grief: We typically think of it in the context of significant loss, like the death of a loved one. Irreversible. Permanent. Deeply painful. But grief isn’t reserved for that. We can and do grieve other kinds of losses. When we’re chronically ill, we grieve the loss of our health — but we grieve the loss of so much more than that, too.

Each of us is different. Our journeys with chronic illness are different, too. But chances are that we share many of the same kinds of losses.

The truth is that what we’re mourning is the loss of who we are — or who we think we are. Because we feel like we’ve lost the very footing that establishes our place in the world.

You’re probably familiar with the five stages of grief developed by Swiss psychiatrist Elisabeth Kubler-Ross: denial, anger, bargaining, depression and acceptance. These stages apply to the grief we experience as those who live with chronic illness.

It’s funny how the grief of chronic illness is itself chronic. It might ebb and flow, but it persists, because chronic illness, by definition, persists, too. There are times when I feel almost normal. Times when I forget, even if only for a while, that I have a disease that can be treated but not cured.

Working through the grief of chronic illness means letting go.

Up until recently I avoided allowing myself to think too deeply about every loss that I am grieving. As unbelievable as it may sound, cleaning out my closet forced me to acknowledge all of the reasons for my grief. You’ve been there — standing in front of your closet knowing that there are items that you need to let go of. For whatever reason. It’s a challenge, because it’s all about letting go.

And it takes time, because so many of our belongings evoke memories and force us to ask hard questions to help us decide their fate. Should they stay or should they go? And then: Why?

This was the question that tripped me. The “why” is what helped me acknowledge the “what” of my grief.

Here are the losses we are grieving:

1. We grieve the loss of our sense of belonging.

Do you remember a time when you felt like you didn’t belong? We’ve all been there — when we’re the new kid in the class, when we start a new job that isn’t a great fit, or when we force ourselves to attend that overly formal office function when we’d really rather have a few beers with a couple of close friends and relax.

When we feel like we don’t belong it’s because we don’t feel a sense of connection.

Feeling a sense of belonging helps us feel accepted, valued and comfortable — because we share lots of common ground with the world around us. We are part of established social patterns.

Chronic illness slowly chisels away at our sense of belonging. We recognize that we’re different — even if other people can’t see it. Although some chronic illnesses can affect our appearance, others may not be so obvious.

Many chronic conditions are invisible illnesses. We don’t feel “healthy,” and chances are that we struggle with fatigue, pain or anxiety. (Or all three.) Living with chronic illness forces us to adjust or reshape our lifestyle. We have to make choices about what we should do based upon what we realistically can do — which is different from what we used to be able to do… before we were sick.

2. We grieve the loss of our independence.

We’re responsible for ourselves. We’re responsible for our jobs. And almost everyone is responsible for taking care of someone else in some way — family, children or elderly parents.

Chronically ill? You may have experienced a role reversal. And it doesn’t feel good.

Chronic disease alters our perceptions of dependence and independence. There was a time — OK, it was months — when I was more physically dependent on my family than I’d ever thought I’d be.

I was too weak and too unstable to do much of anything by myself — walking up or down stairs, putting on my socks or my coat. I know I shouldn’t have, but I felt “less than.” Less than I used to be, and less than I wanted to be.

But this loss of independence isn’t only physical. The grief of chronic illness is as much emotional as it is physical.

The anxiety, the brain fog, the depression, the side effects from medication and the sheer fatigue can render us reliant on someone else to help us manage basic activities and decisions.

3. We grieve the loss of the control we thought we had over our future

We’ve all heard the old adage about the best laid plans. We know (logically, anyway) that anything can happen to anyone at any time. But we don’t live that way because we’d have a chaotic sort of life if we didn’t plan for anything. And we need goals. We need to work toward something.

Sometimes we recognize this pretty early on. Sometimes we only see it after the fact, when we look back and acknowledge a gradual but obvious change to the pattern of how we’d lived before. Working less. Staying at home more. Sleeping longer. Maker fewer plans.

We adjust, consciously or not, to adapt to the unpredictability that accompanies chronic illness. It can be hard to admit to ourselves that the way we used to live may not be possible anymore. We may not have the mental or physical stamina or capability that we used to. That trip overseas with the jam-packed schedule and tons of walking? Maybe the pain and fatigue simply won’t let you do it. That career opportunity that you know would require travel and a 50-hour work week? Maybe it’s not the best idea.

4. We grieve the loss of our health and how we see our bodies

This why the task of cleaning out my closet made me acknowledge my grief. When we get dressed, every item of clothing becomes part of how we show ourselves to the world. It’s an outward expression of how we see ourselves and how we want others to see us, too.

But many chronic illnesses can affect our physical appearance. Autoimmune diseases can affect the skin and muscles, and medications can cause swelling and hair loss. When we look at ourselves we don’t see who we really are.
We see a body assaulted by an unpredictable disease or the medication used to treat it. This is another aspect of the grief of chronic illness.

Over the past year and half since my diagnosis, I’d managed to avoid my closet. For quite a while I avoided it because my wardrobe became extremely limited. I had lost a lot of strength and mobility so I resorted to wearing stretchy, comfortable clothes that could easily be put on and taken off. I’d also lost a lot of weight, so I rotated between a couple of pairs of pants because I didn’t have the stamina to shop and really, where was I going anyway? I relocated my limited wardrobe (basically a small pile of clothes) to a place where I could physically reach them since I could no longer reach the shelf in my closet.

There is power in letting go.

When I regained some strength and mobility, I was able to wear more of my clothes. But you know what? I was SO tired of the clothes I wore over and over for months because they were the only clothes I could wear.

And I’ve never been able to gain back the weight I’d lost, so many of the clothes don’t fit. I have shirts and blouses I’ll never wear again because I don’t feel good in them. Some of the muscles in my neck and shoulders have atrophied and certain styles just aren’t flattering anymore. As for my shoes, who am I kidding? I can’t wear the heels anymore. I’m just not 100 percent steady on my feet.

So I did it. I let them go. I got rid of all of the things that don’t serve me anymore. Was it easy? No. But it was empowering. Because in letting go, I named my grief. I made peace with what was. But more importantly, I made room — literally and metaphorically — for what can be.