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Why We Need to Stop Ignoring the Trauma of Being Diagnosed With a Chronic Illness

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When we talk about trauma, we may tend to think of it as being caused by a single terrible event, such as an accident or an incident in which we felt we were in danger. However, this way of thinking may make it easy for us to forget about the other things in our lives that cause us distress and can leave us dealing with the emotional aftermath of our trauma for years to come. These other events include losing a loved one, losing a home or belongings, and of course, becoming ill with a chronic illness.

While all these events are incredibly different, they all include one thing in common: the loss of something you can’t necessarily get back. When you lose someone close to you, you may cling to the memories you made with them as you know you will not be able to make any more. Similarly, when you’ve lost your home and precious possessions to a flood or natural disaster, you might try to remember the happy moments you had there as you may not be able to return. As for living with a chronic illness, you may spend a lot of time thinking about all the activities you were able to do before you became ill that you know you may never be able to do again.

When I first became ill with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), my entire life changed. I quickly went from being an active 12-year-old to a child who had to stay in bed for most of the day. I lost the carefree fun I had known up until then and had to start thinking about how I was going to manage my life with this illness. It was a huge shock to realize I couldn’t do the things I could easily do before. I felt as if I was suddenly a different person and there was nothing I could do about it. This is an experience many people with chronic illness go through, and yet they are regularly left to deal with it on their own without help from health care providers.

It has taken me a long time to become comfortable with the reality of my illness. I’m not going to claim I am completely fine with it because that isn’t true. I still have days when I feel upset or confused about it, and I’m not sure if those feelings will ever go away. However, after spending time coming to terms with my condition and engaging with the hobbies that are still accessible to me, I’ve managed to get a piece of myself back that I thought I’d lost. I’ve also found strength in the knowledge that despite how difficult living with chronic illness has been, I’ve managed to learn to live with my condition while still doing things that make me happy. This is something I am very passionate about, as I believe those of us who are chronically ill deserve the right to a life we can enjoy. I like to share some of the tips I’ve learned to manage my illness on my website and also highlighting different parts of my condition to help those who don’t have it understand and those with CFS/ME feel less alone. I’ve found loneliness and isolation are often key challenges of the trauma of illness, as you often believe you are dealing with your illness on your own.

I think it is time we stop leaving people with chronic illness to deal with their trauma in silence. We need to recognize illness as a potentially traumatizing event and give those who have experienced or are still experiencing chronic illness the help they deserve.

Getty image by Tony Anderson.

Originally published: February 11, 2022
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