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The Many Feelings of Grief I've Experienced Since My Diagnosis

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Grief: a normal response to losing someone or something that’s important to you. You can feel grief as a result of a variety of circumstances including the diagnosis of chronic illness and then trying to accept it. Grief, regardless of the cause, produces a variety of emotional responses. The list is long! I think I can tick just about every one of these, and some of them more than once.

I was diagnosed with chronic asthma just two years ago. It has turned my life upside down! The only good thing is I now have a disability sticker for our car to use when I can hardly get about. These are some of the feelings of grief I have experienced:

Anger: I feel this only sometimes and usually when I think too much about what I can no longer do. E.g. I always wanted to travel to Canada as my Dad was born there. Can’t get travel insurance. Can’t really fly long distances now. Can’t go where there is lots of moisture in the air. But, there are still places I can visit in Australia.

Anxiety: Oh yes! Lots of anxiety, especially when I ponder the future or think about the change from independence to dependence.

Panic: Sometimes…but I feel panic mostly when I am having a full-blown asthma attack. It’s hard not to panic when you can’t breathe. My panic is more physical than a grief response.

Change in world view: Hmm, perhaps I am more understanding of others. I certainly have more compassion for those affected by obesity. My reliance on steroids has caused obesity and I don’t like this. But, being able to breathe takes precedence over concerns about becoming so fat.

Change of values and beliefs: Yes, I have noticed a change in what I value and believe. What I value as a good day and a good time is now quite different. My beliefs are pretty much as they were.

Confusion: I definitely experience this! My brain just won’t work sometimes. The wrong words come out. My sentences get their endings lost. In the middle of a conversation, I just forget what I was saying! Sometimes what I say doesn’t make any sense at all. I recall answering an emergency doctor with something that appeared logical but just wasn’t correct, and the doctor didn’t realize my response was incorrect at all. I only realized later on. This confusion gets scary and frustrating.

Sadness: Oh yes! Lots of the time! I miss the old me. I miss my old life. All my relationships have changed. My kids treat me differently. So do my friends. I am the “fragile ill person.” Some friends have just dropped away. I think I am just “too hard.” There is deep sadness about these losses.

Numbness: Not sure that this applies.

Depression: Yes, yes, yes! But I know when and how to get help with this. I get professional help.

Sleeping difficulties: No, my CPAP machine keeps me in a deep sleep. On reflection, I do have hyped up nights where I sit up as a result of such high doses of ventolin. Then I feel hungover for a few days. Yuk! But, I think that this is a physical effect rather than a grief response.

Physical symptoms: Not due to grief but certainly from my illness. My physical limitations are frustrating.

Changes in appetite: No. But unfortunately I have to manage what steroid weight gain has done to me. I struggle with this.

Low self-esteem: Not sure. I struggle a bit with being obese but I do occasionally treat myself to a rather wild hair color, like bright pink with turquoise. That always makes me feel a bit better. And maybe people will remember my hair and not my size!

Difficulty concentrating: Yes. I do experience brain fog. Is this due to grief or my illness?

Inability to cope: Some days are better than others. I do not believe we should live a life of coping; life should be full of love, joy, experiences, fun and the negative emotions such as anger and sadness. Coping, as far as I feel, is not good enough for anyone’s life.

Guilt and remorse: My guilt is about the impact my illness has had on my husband and my family. It has brought so many changes into our lives and we have had to let go of many plans. If I dwell on this I do feel guilty.

Helplessness: Yes. So often I can’t do anything much at all except to just “be.” This has been very hard to accept.

Hopelessness: Oh yes! I really struggle with this emotion. I think this comes from the relentlessness. My illness is there every hour of every day affecting every aspect of me!

Loneliness: Yes! Yes! Yes! Chronic illness is isolating. Many people just don’t get it! Well-meaning friends and acquaintances offer all sorts of ways to fix me up, but often their suggestions do not help me at all.

Relief: no, this isn’t a grief response that I have experienced.

Shock and disbelief: Yes. At first I pondered “why,” but “why” is actually quite an aggressive question and can be self-damaging. Not even my doctors can tell me why, and why doesn’t change my circumstances one bit at all. So I am learning to let go of “why” and of shock and disbelief. This is the new me and my new life. Some days I easily accept that. Other days I fight with myself about this acceptance.

I am not sure the old adage that time will heal the grief applies when you are dealing with grief associated with chronic illness. For me it’s been like an onion skin. I deal with one layer only to reveal another layer. And like with peeling an onion, I have shed many tears. But gradually, acceptance happens at some level, but will time ever erase this grief?

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Thinkstock photo via natalie_board.

Originally published: April 28, 2017
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