Moving Forward From the Grief That Accompanies Chronic Illness


After being diagnosed with a rare chronic pain disorder known as complex regional pain syndrome over 22 years ago, I struggled for years to find balance and accept my new normal. I liked the old me. The fun-loving me who enjoyed camping, hiking and playing volleyball. You see, when health challenges turn your life upside down and you can no longer do the things you once enjoyed, you lose a piece of yourself.

We, as people, tend to identify ourselves based on what we do. When introducing ourselves we describe ourselves based on things such as where we live (I’m an American. I’m a Kentuckian.), our job (I’m a teacher. I’m a doctor. I’m a police officer.), organizations or groups we associate ourselves with (I’m a Christian. I’m a veteran. I’m a member of a club.) and things we do for fun (I’m a skier. I’m a golfer. I’m a runner.). When health issues take these things out of our lives, it’s like our identity has been stolen and we no longer know who we are. We grieve the person we once were and feel lost in our own bodies.

After struggling for several years with chronic pain and who I was, I realized my past life of hiking and playing volleyball was probably over. I began doing craft-type activities and found a new love for painting and knitting. I was beginning to accept my new normal, when gastroparesis entered the picture. I could still paint and knit, but now I couldn’t eat. My favorite foods… fried chicken, biscuits and gravy, spaghetti… they all made me vomit. My weight began to drop quickly, I became weak and my legs cramped. I watched as my fingers and toes began to look a grayish color and my skin became formable like Play-Doh. Again, I began to struggle. I didn’t know the pale, sickly woman in the mirror looking back at me.

New doctors were added. A picc line was put in so I could be hydrated with IV fluids at home. A gastric stimulator was implanted to help my stomach work more normally. I saw a dietician. Gastroparesis, like CRPS/RSD, does not have a cure. The doctors treat the symptoms in an effort to improve quality of life. This time I adapted to my new normal a little more quickly. I’ve accepted that fried chicken, biscuit and gravy, other fatty fried foods, fresh vegetables and fruits, foods high in fiber and spicy foods are probably never going to be a part of my diet again unless I want to be sick after eating. I’m learning to make my own veggie burgers and meat substitutes using various overcooked vegetables, protein powder and gastroparesis-friendly herbs. It’s not what I grew up eating, but I’m learning to like my new, healthier food choices.

Over the years, I’ve come to realize that life is a series of events and if we want to make the most out of life we must be flexible and willing to try new things. We have to learn to let go of the past and embrace the future. Just this week I found out my recurring urinary tract infections are probably being caused by a bladder that doesn’t empty properly. I don’t know what will become of that. I’ve just started seeing a doctor for it and more testing is scheduled. I’m also having recurring ear infections that don’t want to go away and am scheduled to see an ear, nose and throat specialist. I’ve accepted that whatever becomes of it all, I’ll deal with it as it comes along. Yes, I know there will be more struggles as I try to adapt to my new normal once again, but this time I feel more prepared. I’m not worried about what might happen. I’m just going to enjoy the moment and live life as it comes.

Yes, when you live with chronic health issues, life is a struggle. However, your attitude and how you approach those struggles plays a huge role in the enjoyment you get out of life. You can choose to live in denial and try to run and hide from your problems or you can face them head on as they come and problem solve to find ways to live life to the fullest with those health conditions. Me, I’m choosing to accept my new normal and live the best life I can no matter what I have to face. I know there will be more struggles ahead and I’m sure there will be times of grief as I lose my identity and have to find myself again. I’ve learned that no matter how weak my body may seem at times, that weakness has made me stronger as a person.

For those struggling with new health conditions and the grief associated with not being the person you once were, I encourage you to continue to move forward. No, you may never be the person you were before, but there’s nothing wrong with the new you. You may have to do like me and find new interests and hobbies, but the important thing is that you keep moving forward and striving to live the best life you possibly can. You may feel like your life is over, but it isn’t. You’ve just come upon a road block. With time, you’ll find your new path and continue through life in a different direction. As hard as it is to wade through the process of grieving our old self, the thing that has helped me most was meeting others who are traveling down the same road. Their courage and strength helps me to continue to look up and move forward. I hope I can inspire someone else to do the same.

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Photo via heckmannoleg on Getty Images

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