The Grief of Chronic Illness

There have always been people with Chronic Illness. Mostly they remain hidden and few people acknowledge their existence. Occasionally there may be some uplifting story about someone with a chronic illness achieving some great thing. But mostly people are unaware of chronic illnesses in our society.

With COVID there has been slightly more awareness of chronic illness as people have been impacted with long COVID and other side effects of the disease such as the loss of smell and taste.

Chronic Illness Is A Loss That Needs To Be Grieved

There is little attention paid to the necessity of people whose lives have changed dramatically to grieve for what they have lost.

Even people impacted by chronic illnesses that they eventually recover from need to grieve what they lost.

I Have Been There Too

I understand this because as a teenager I had an illness that led to me over a year losing 6 months in three month blocks from school during the last three years of school. When I recovered I still lacked the stamina to do much more than go to school and go home.

I lost those experiences of getting a part time job, socialising with friends, achieving what I wanted to at school, and confidence in myself. Long term illness can do that to you.

I also lost faith in my health, Even now, all those years later, I am aware that I could suddenly lose my good health and be incapacitated. Most people don’t even think about it.

The Great Silence Around Your Losses

When I was sick nobody talked about what I was missing out on. Maybe they didn’t want to worry me. Maybe it didn’t occur to them. But those losses were hard, and it took me a long time to recognise they were losses and that I needed to grieve for them.

Talking about my losses would have given me permission to grieve for them.

I have learned over the years to grieve for what I lost, but I see many people who don’t realise they need to allow themselves to grieve.

The Uncertainty Is Frightening

I didn’t know at the time whether I would get better. Other people didn’t. I didn’t know if my life would never get to start the way I planned. Other people don’t get that chance.

It was a frightening time.

No matter what age you are, discovering you have a life changing illness, one that will not be over in a matter of a few days, is devastating.

What is not generally acknowledged is that chronic illness is a major loss. It needs to be grieved. The feelings around that loss need to be allowed and acknowledged. If they remain hidden they will never be resolved. As with any grief, embracing those feelings is essential to allow grief to progress and for you to move forward with life.

Many who experience chronic illness tell me they have to come to a place of being able to accept this is their life now. Then they can learn how to live with what is.

The Experience of Long COVID

One long COVID sufferer I saw recently spoke about losing their job and the ability to pay for private health, the loan on their house, and the loan on their car. They could no longer manage to take part in all the sporting activities they loved to do. They became a shadow of the person they saw themself being.

They tried to stuff their feelings down. To ignore the enormity of their emotional pain. To adopt a happy persona who saw the positive in everything. But they couldn’t keep it up.

The biggest issue for them was the loss of control over their life. Suddenly their body was taking control and they were powerless to stop it.

This is when behaviours aimed at gaining some sense of control can creep in. Addictions and eating disorders are the most encountered control behaviours. Pushing yourself to “do” things is also a control mechanism. If you can “do” you can control your life and it has the advantage that you can avoid dealing with the grief around the changes in your life.

These behaviours don’t help. They just compound the problem.

Finding Help

Many sufferers report that finding a counsellor who understands this is difficult. Even understanding from family and friends is difficult to find.

An awful lot of time is spent trying to find help or running away from the reality of what is happening.

You may find yourself oversharing on Social Media or directly to friends. Sharing all the symptoms, all the losses, all the emotions. You may find loads of sympathy or you may find people stop responding and start avoiding you instead. Ultimately you will realise sympathy doesn’t help.

What Helps?

What helps are those who help you to process your grief. Those who help you to find a way to manage the new reality. Those who stick by you no matter what.

It also helps to allow yourself to experience all the pain of the emotions of grief and loss. If it is hard to do you may need the help of an understanding counsellor.

Don’t be afraid to seek help. Chronic illness is a hard journey and one best done with support.

Can I Help?

If you would like to talk to me about how I can help you with your grief over your chronic illness, please contact me on 0409396608 or

If you would like to learn more, I write a regular newsletter with helpful information, tips, information on courses, and the occasional freebie. At the moment I have a free mindfulness meditation for anyone who signs up to my newsletter. This meditation offers a way to safely explore your feelings and learn to be okay with them. If you would like to subscribe please click on the link here:

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