7 Ways I Cope With My Loss of Identity After a Chronic Illness Diagnosis

When I became ill in early 2015, it felt like my world was coming to an end. I had my dream job, I was volunteering and I had just finished my counseling diploma. I was looking forward to spending more time with my family and for life to become a little slower paced. I didn’t expect it to come to a screaming halt. I spent most days on the settee or on in bed — crying.

Within six months I lost my independence, my dignity and my career. I lost my whole identity as another one was forced on me. And I felt sorry for myself. I cried for the person I was and the person I wanted to be. I cried because of the person I had become. I felt sorry for myself and did so for most of 2015.

People who haven’t gone through a life-changing experience like a chronic illness sometimes can’t understand the enormous feeling of loss that you experience.  How many times have you heard phrases like “feeling sorry for yourself,” “pity party” or “pull your socks up and get on with it.”

What they don’t understand is that you’re grieving. In her book “On Death and Dying,” Dr. Elisabeth Kübler-Ross said there are five stages of grief: denial, anger, bargaining, depression and acceptance. These stages of bereavement aren’t just for those coping with or facing death. They’re also present when coping with a personal loss, divorce, loss of a job, infertility, addiction and chronic illness.

I’ve pretty much gone through all of these stages in the last 18 months more than once and will probably go through them again (hopefully, not as intensely) because grief and grieving are not a straight line process. You don’t start at “anger” and work through to “acceptance” and then, presto, everything is fine. Life isn’t like that, and chronic illnesses don’t have a neat little timetable you can go by.

How do I cope? In part, my training as a counselor has helped. I have to be self-aware and be able to recognize and own my thoughts and feelings. It doesn’t mean I’m immune to the stages of grief; it just means I’m able to take a step back and identify them.

Here are seven ways I cope with my loss of identity:

1. I allow myself to feel the way I do.  

I have a right to feel my own feelings and express them. This can be pretty scary for yourself and those around you. You might not have realized how powerful these thoughts and emotions were or how deep they go. 

2. I have a choice.  

I bet you’re asking, “How can you have a choice when your whole identity, your ability and independence has been stripped away?” Every day I have to make choices. This morning I had to get up, get showered and get dressed or stay in bed. This might not seem like much, but these little choices have helped me feel I have some control over my life. I can choose to be happy or angry and relaxed or stressed. And I choose how I react to my thoughts, feelings and those around me. Sometimes I chose to be the angry, stressed and irrational because I needed to get it out of my system. 

3. That said, I don’t hold onto them.

I feel them, I express them and I let them go. When I have a good five minutes, I try to enjoy those pain-free, fog-free moments. I don’t want to depress myself by worrying how poorly I could get at any given moment.

4. Expect a bumpy ride.

Be kind to yourself on bad days. Celebrate the good days. Expected the unexpected. They may sound like clichés, but I think they’re right. Life is messy, and life with a chronic illness can feel even more so. We aren’t Scouts — be prepared is a pretty difficult motto to live up to when you don’t even know how you are going to be in the next five minutes let alone the next day, week, month, year. Living with unknown is hard. I found mindfulness helps. No, it doesn’t take away my pain, but it helps me be in the moment, the present and the here and now. It takes practice. It’s not easy, but then living with a chronic illness isn’t either.

5. I find comfort in the experiences of those who are like me and in learning about my condition.  

Facebook groups, bloggers, Pinterest boards and my family. These are places I feel safe enough to express myself and educate myself. Here I find understanding about the day-to-day realities of life with a chronic illness. They help me understand what’s happening to me, so I’m not in a permanent state of confusion and don’t feel alone. 

6. I got a hobby.  

At first I watched a huge amount of Netflix, but the busy person in me found it hard to do nothing all day except rest. I thought about how creative therapies are used to help people. I taught myself to loom knit, weave and crochet. I’m still trying to widen my creative horizons on days where I can’t use my hands. But my brain still works, so I have alternative methods of coping instead of lying in bed feeling useless.

7. I laugh at myself.  

I poke fun at my own condition, especially on the fibromyalgia fog days because you know I’m quite funny when my brain isn’t in gear, and I don’t want to be frustrated and angry all of the time.

All of these help me cope with my loss. They help me realize that having a chronic illness isn’t the end of my world. It’s a chance to think about who I was, who I am and who I want to be. With time I’m sure I will get to “acceptance,” and the grief I feel will fade. But until then, I’m not beating myself up about the times that I’m “feeling sorry for myself.”

Follow this journey on The Dottie Dormouse.

Lead photo source: Thinkstock Images