Grief and Chronic Illness
There is a lot going on emotionally when you have a chronic condition. The journey of a chronic condition has many stages and with it, at each step, I have found a whole round of emotions. Mostly grief, anger, frustration and well being pain.
Living with a Chronic Condition Means living with chronic grief
A really clear emotional state is the emotion called grief. Let's take a look at this in more detail.
When I began to realise something wasn't right I began to feel the grief of not being able to keep up or join in. At work, with friends, with activities. Many of these things I started to realise that I felt it was better if I simply didn't join in. At first there was a safe feeling that this meant I wouldn't feel even worse. But then that feeling turned to grief as I realised I had left the person I was behind at some point. It often doesn't happen overnight, it sort of sneaks up on me and I feel the full weight of that feeling.
And there is another stage of grief when I finally got myself together and advocated for my health and my self. I got my hypermobile Ehlers-Danlos Syndrome diagnosis. And I felt pretty good. I felt vindicated and I felt like I was right all along. But then this turned into grief because of all the time I had spent going to doctors, the scans and tests, the looks and all the "your blood tests are normal" comments. And I realised how much I was grieving the time and opportunities there were to diagnosis me and help me manage this condition much earlier. I sat and cried at all those moments and grieved over and over.
Another aspect of grief in relation to a chronic condition is that my condition changes daily, weekly, monthly, annually. Over and over again my body changes and hurts and I live in a real drama where I haven't written the script and I have to keep up with the changes. I grief almost daily the body I had, and the person I was. Every person I could have been, every path personally and professionally I had been on but that changed. And so I grieve, present and persistent tense.
And another part of grief is the grief of having to leave many a stage, space or place. I have always loved to dance, be around my dance friends but the sad truth is that I had to leave that world, that stage and those friends. A place of fun, safety, self expression rich and much more meant that I lost a huge part of my self and my personality. A lot of the time I thought many of my dance friends were friends but in reality when you leave, many friends I realised weren't friends. They were simply people that I danced with. And I grieved friends and dances that were and that will never happen.
I grieve the family and childhood I had because it is now clear how much pain I was in, how I was simply trying to get through one day at a time and how my family through no fault of their own were ignorant of my issues with tissues. All the times they helped me deal with it over and over again, from the herbal teas for the tummy issues, from the fatigue and being called lazy, I have realised how much my condition was my childhood but no one was listening because non of us knew. And that many doctors kept saying I would grow out of these pains. And I never did!
Another area I spend a lot of time grieving is food. Every few months I am reminded by my bowels just how much I have to be careful about. Just how much I cannot eat certain foods that I love but do not love me back. How exhausting it is to find new foods, new food combinations, to help rather than hinder my health. I miss food favourites like pop corn and eggs. I miss being able to cook what I want and when I want. Instead I need to cook being cognisant of my tummy at all times. And I grieve the foods I used to love and the ease of quick snacks and cooking.
And I have and always will grieve my eyesight. I knew from very young my sight was compromised and would always be an issue and every appointment I go to for my eyes at the hospital or the opticians or every time I have a new prescription or every time I open my eyes and see a blur and every time I look at a face and see wiggles spoiling that sight I grieve.
How to Cope with Chronic Illness Grief
These are a few ways hope I cope
Feel the feeling
It isn't nice and it is painful but I feel the grief loud and proud because otherwise it can fester and eat at you and that doesn't help with the pain at all.
Corporally process the feeling
I allow the body to feel the grief where it wants to. Maybe my heart feels heavy, maybe my tummy does - wherever it wants to be felt and move I let it.
Talk it out
Then after that feeling has had a chance to be felt in the body, then and only then will I verbalise it. Doing it first would mean I have intellectualised the issue rather than felt and processed it all.
Hug it out
A hug from my support people helps massively. The feeling of being held is one of feeling safe if only for a moment or two can help so so much.
Ask for help
And yes, I have had professional help in the form of therapy because sometimes you need to off load with a trained professional that can simply be there, holding space for the grief.
What helps you with the chronic illness grief?
I hope that you find some space and place to grieve for you and your chronic illness. At times it can be hard and sticky and painful and often feels never ending. But next time I shall talk about how to find some peace even with this grief and pain from the chronic illness.
For now, stay well, take care my paindrops.
xx