Do you live with debilitating chronic illness that has led to significant life changes? If you’re nodding “yes”, most likely you’ve felt a strong sense loss.
But have you experienced grief? I thought about the importance of grieving after reading two articles recently.
The first was a news article about James Levine, the Metropolitan Opera and Boston Symphony Conductor. The other was a post, Self Image and Living with Rheumatoid Arthritis, written by RA Warrior, a blogger.
Although neither article focuses on grief, RA Warrior’s post notes the grief from her changed self image. Maestro Levine has had cancer and back surgery that have led to being unable to work – (“Conducting life and illness”, my post. Now he needs a second scheduled back surgery. The articles about Levine’s surgery focus on more canceled performances and the possibility he could lose his job with the BSO. But I have a hunch this extraordinarily successful man must feel loss – – lost time, missed performances and opportunities and, looking ahead, the possible loss of his life’s work.
In her seminal book on grief, On Death and Dying , Margaret Kubler-Ross identified 5 stages of grieving with each stage necessary to pass through before the next. In my book, Women, Work and Autoimmune Disease: Keep Working, Girlfriend!, (p.78), I describe the role grieving plays in accepting living with illness.
Chronic illness isn’t static. It’s an on-going, ever changing experience. It can mean missing an event, losing a job or being unable to walk on your own. Unlike a permanent loss, such as death, illness goes on living with us, side by side, rarely staying the same.
I’ve found that the challenge over 30 years has been to find a way to grieve and not let that take over my life. I’ve learned to grieve in “contained” spaces. These are the moments that you take to to pay attention to the thoughts and feelings — to notice and listen. That gives the grief room to be heard rather than stuffed nor ignored.
Loss and grief. The former is an event but the latter is what we must do. How do you do it? What works for you?
Heidi says
This is so helpful, so apt to my situation right now. I am just sorting off being away from work for a long time and trying to figure out if I can go back after being diagnosed with an illness that will likely kill me in three years. I find that grief is so slippery, nothing I can ever hold in my hands. Your article let me grasp it for a few moments, which was so very important. THANKS.
Knowing about this (probable) end state of my situation, it’s hard for me to grieve in a contained situation and then move forward, as you have mentioned. That seems so healthy and what everyone should be doing. Sometimes I have trouble wrapping my mind around the end of grief for this, though. That may be part of the problem I am having with focusing. Any thoughts?
Rosalind says
Heidi- It sounds like you’re in a very very difficult place and I admire your ability to speak of it so clearly. I have one question: What have you tried to do and how has that gone? Seeing what, if anything, can help is useful.
Additionally, I work with clients using a technique called “Focusing” and you might read about this – FocusingResources. com – I’ve found it’s a very helpful tool to access those places of deep pain and letting them be “heard” so they’re not always getting in your way. Read about it and feel free to email me (through my website) any questions you have. I hope this is helpful. Let me know if I can be of service in any way.
Pam says
My grief and anger has been because I am single and have a big family here in town-mother,brother, sister, nieces and nephews and they are basically too selfish to help me! But it was that way when I had cancer, so I shouldn’t be surprised it is any different now. It’s very hard to grieve and accept that your family is this way. But in order for me to move forward, I finally had to do just that. I was wallowing in self pity and anger and it was keeping my chronic illnesses from getting better. So, I stood up to them and told them how I felt, risked their rejection and moved on. Now I only see them on holidays.
I’m doing volunteer work that I have always wanted to do with the homeless while I am looking for a job. And I am getting active politically which is another thing I love. Before, I was taking care of my mom and everyone else. Now, I realize I have to take care of me. I still grieve over the loss of my family, but I pray for them and I know I did the right thing for me as I feel better than I have in a long, long time.
I’ll go to this Focusing website as it sounds like something I would be interested in.
Heidi says
Rosalind,
Thank you very much for your response. It is very helpful indeed. I remember reading about Focusing when I was in grad school…and promptly forgetting it. How quickly we forget those things that can be helpful!
I’m very interested and will be in touch with more questions, but your phone seminars sound so great–they’re delivered in such a way that just about anyone could participate. Wonderful!
Best,
Heidi
P.S. I’ll be in touch soon.
Rosalind says
Glad the Focusing link is helpful. I use it a lot with clients and do some guided work when they’re interested and it can be very powerful and useful. FYI – I don’t offer phone seminars these days. Is that still listed on the website? Have to remove it, if so!
Lotty says
My situation is very different from Heidi’s, I have psoriatic arthritis, and actually since starting Humira this December it’s very much under control (except for the fatigue perhaps). But having read your blog entry I’ve realised that I coped with grief by starting taking Prozac in January 2009, and I’m still on it. Perhaps I need to be brave and wean myself off.