Normally when we think of grief, we picture the tragedy of losing a loved one, however grief can come in many different forms, not just bereavement. Grief is described in the dictionary as being mental suffering or distress over an affliction or loss, that loss includes the loss of one’s health. Anyone with a chronic illness will understand that grief is an intrinsic part of the experience and it is something which ebbs and flows for the duration of your chronic illness journey. In this article I want to discuss some of the ways I have coped with the grief I experience as part of my chronic illness.
Having a chronic illness changes your life dramatically. There is no escaping that it goes hand in hand with loss; the loss of health, the loss of relationships, the loss of career, loss of sense of self and so on. I can only speak from my own experience, but for me I was overwhelmed with grief following my chronic illness diagnosis and I had absolutely no idea how to handle it.
My experience with grief and chronic illness
Since being diagnosed with Rheumatoid Arthritis five years ago I have certainly experienced the traditional stages of grief but not in the traditional order. I have bounced between denial, anger, despair, bargaining and acceptance, sometimes experiencing them all in one day!
After my initial diagnosis I spent a long time feeling angry and in despair. I also experienced a huge loss of sense of self, which I found incredibly difficult to cope with. I shut myself off from the world, and my loved ones, because I couldn’t process how I was feeling, let alone explain it.
In time I realised I had to find a way to move past the loss and find a way through the grief or I’d end up consumed by it. I knew it was having a dire effect on my mental health and I couldn’t prioritise my health and self-care without including my mental health in that. Below are some of the ways I processed my grief, accepted my diagnosis and learned how to love and accept my new self. I still have days where sadness or anger creep in, but I am much more able to deal with them and process them in a healthy manner now.
Allow yourself to grieve
Perhaps the most important thing I learned after falling ill was that allowing myself to grieve was key. I had to give myself time and space to feel all the complex emotions that come with grief and loss of health. There was no rushing myself to feel better. I learned to give myself permission to cry and that it was okay to have days where I felt like I couldn’t go on anymore. Sometimes I just needed to feel that despair before I could process it and move past it.
I gave myself permission to be angry, because there was a lot to be angry about and I needed to process that anger and find a way through it. I was bitter and without expressing my anger and allowing myself to feel my loss, I would only have remained bitter.
Give yourself permission to grieve. Don’t bottle it up, cry if you need to, scream if you need to, beat pillows and wallow in your despair. Just don’t stay there!
Find ways to channel your emotions
For me, processing the above emotions would not have been possible without writing them down. I struggled for a long time to voice them to loved ones, but in the meantime, I wrote a lot of it down. It helped me greatly to get those feelings out, to verbalise them. It helped me understand what I was feeling and why, which was key to learning how to manage those feelings and cope with my grief.
Everyone is different but find something that works for you. Say it out loud to yourself, write it down, write letters or poems, express it in online support groups, write a song, draw a picture. Find some way of channelling how you’re feeling.
Once I’d begun to process some of what I was feeling I found it easier to express to others. It was a big step for me and one I found very challenging, but it did help.
There’s a great resource I found which helped me a lot called the Wheel of Emotions (see below). It takes seven basic emotions and unpicks them to understand exactly what emotion you’re feeling. For example, I often said I felt angry when in fact I was feeling frustrated or numb. I would say I felt sad when actually I felt vulnerable, lonely or inferior. The emotions wheel helped me better understand what I was feeling and also better express it to my loved ones. By expressing exactly what I felt my family and friends were better able to support me, because support for feeling lonely is very different to support for feeling inferior. With time I learned to express what I was actually feeling and why I was feeling that way. I still use the emotions wheel today; I find it an invaluable tool.
Try to communicate to your support network how you’re feeling, you aren’t alone, and everyone needs support.
If your real life support network isn’t great, then reach out to online support groups or local support meet ups. I would also advise speaking to a therapist or counsellor if that’s something you can get access to. See your doctor if your mental health is suffering because of chronic illness. I found great support from my medical professionals when I went to them and explained I was struggling. I was treated for anxiety and depression and with help my mental health greatly improved. By communicating and connecting with others it helps us to feel less alone in our grief and provides us with the necessary emotional support to move forward.
Find the positives
I know some days finding the positives in a life with chronic illness can be tough. However, I refuse to believe life is all bad. It was easy to forget to count my blessings when the loss of my health cut so deeply. However, it helps me immensely to count my blessings and find my positives on a daily basis.
Find something you love and do if often. I know chronic illness can steal many of our hobbies but go and find a new one you can do or adapt and find new ways to do things you used to love doing. I love writing, and despite the fact some days I can’t do it due to pain and fatigue levels, I embrace the days when I can do it. This blog was born from pain and became my greatest tool in overcoming chronic illness grief. It helps me connect with people all over the world, it opened up a whole new support network, it helps me express my feelings and experiences and has been invaluable in my acceptance of my new life with chronic illness and my new self.
Find something that gives you a reason to keep going, do things that bring you pleasure and count your blessings.
Celebrate the little victories and be thankful
Enjoy the small things and celebrate the little victories. Instead of berating yourself for what you haven’t done today, celebrate the things you did do, no matter how small. Getting out of bed is an achievement and you deserve credit for it. Champion yourself and remind yourself that you are amazing, and you are a warrior.
There is always something to be thankful for, even if it’s just that you’re still breathing. It may help to keep a diary where each day you take a few minutes to record something you’re thankful for that day. Today I am thankful that it’s sunny. Yesterday I was thankful for my friends.
This one is tough, but it can be done. I found it incredibly difficult to picture how life would be with a chronic illness and what kind of future I would have. Everything I prided myself on, and that I thought was important to my future was called in to question when I got ill.
It took me a long time to accept that I couldn’t work and that my career dreams would never be met (see my article about losing my job to chronic illness here). However, I made new goals and chose new dreams. I can’t work in the conventional sense now but maybe one day I can do something with my writing.
After my diagnosis I had to rediscover my identity and re-evaluate what it was that mattered most to me. I discovered that who I am is enough and that my chronic illness does make me any less valuable or significant in this life.
Accept the new you
Despite my illness I discovered that I can still make a difference, simply by sharing my story and connecting with others. I learned that my family, husband and friends love me for who I am, and my illness can’t take away who I am at my core. I learned that I am more resilient, strong and determined than I ever knew.
These days I prioritise my health and self-care. I no longer push myself to meet other people’s expectations and I no longer beat myself up for not being able to do everything I used to be able to do. My health comes first, and I no longer feel the need to justify that to people. I have let go of the guilt that so often accompanies life with a chronic illness and accepted this new version of myself. I’m rarely angry about my illness these days. Instead I am thankful for what it’s taught me and enjoying finding happiness and fulfilment in new places.
I believe we can all do this, and in doing so find a great deal of freedom from the grief of chronic illness.