Grief and Chronic Medical Conditions

by Anne Windermere Patient Advocate

When I was a college student I had taken a death and dying class where we learned about the stages of grief. I am sure many of you can recite the list from any introductory psychology class you have taken. There are variations of this list but mostly the grief stages include: Denial, anger, bargaining, depression, and acceptance. It is one thing to memorize such a list for a college quiz. It is quite another to go through these stages in real life. Grief does not know any boundaries of age, race, income, or gender. It doesn't matter if you live in a mansion in Beverly Hills or a one bedroom apartment in New York City. Grief will visit you one day. The time will come when you will experience a loss. Grief isn't contained to the emotions felt upon losing a loved one. One can also feel grief over the loss of a job, a relationship, or even your health. It is the grief experienced when dealing with health problems that I wish to talk about today.

For many of the people who come to Health Central to look up a particular disease or medical disorder, grief can be an accompanying issue especially if what you are dealing with is considered a chronic condition. On a personal note, this is how I came to find this health site. I was struggling to cope with my diagnosis of Multiple Sclerosis and was told about Health Central as a place to find support. I found that I was not alone in my struggle. In fact everyone who faces a diagnosis of anything from Bipolar Disorder to Diabetes will experience a feeling of loss. It can be frightening to hear your diagnosis. It can be even more daunting to hear that your condition is on-going and you will have to find ways to cope with it your whole life.

I am going to tell you about my personal experience with the stages of grief I encountered when I heard that I had Multiple Sclerosis. It has been over two years now (I got diagnosed in the fall of 2007) and I can honestly say that I have finally found some acceptance in all this. But some days I fall right back to the beginning stages and am in denial once again. Grief isn't some predictable point A to point B kind of thing. It isn't like you graduate from grief and get some sort of diploma saying you have achieved acceptance. It is more like you take things day by day, sometimes feeling every emotion at once, as you attempt to live with an uncertain future.

Through a strange set of synchronicities I knew I had MS before I had my first MRI. I remember experiencing some of the first symptoms of my disease such as muscle weakness and feeling off balance and sitting on the edge of my bed to rest. My mind was racing with the banner like thought of "What does this mean what does this mean?" And my mind would answer, "You know what this means." As each new and bizarre symptom would appear I would try to dismiss them with other logical explanations. "I must be tired, clumsy, or crazy." As more tests and doctors visits would lend credence to my impending diagnosis, I still clung to the thought that perhaps this was all some big mistake. It was not. I had MS. Yet even after the official diagnosis was made, I would ask the neurologist, "Are you really sure?" expecting that somehow my doubts could magically change reality.

I felt I was handling things so well with all the MRI's and testing and doctor's visits. But then came the day of reckoning when I got THE phone call. It was my general practitioner telling me in doctor-eze that the "white matter abnormalities found on my brain MRI were consistent with a demyelinating disease, Multiple Sclerosis." I had multiple brain lesions. I sat there with the phone receiver in my hand and began to bang it upon the edge of the bed. I remember this fire of rage rip through my body. Here was this person explaining this to me as one would explain how to boil an egg. If I were a man, I probably would have put my fist through a wall. But instead, ended the phone call politely, went into my bathroom and screamed obscenities. All of my life's struggles stood before me. I thought about coping with living with a schizophrenic mother, coping with poverty, abuse, my miscarriage, years of infertility, and finding out that my youngest son has autism. And now MS??? "Are you kidding me?" I raged inside. Haven't I been through enough? I even pointed my finger to God and told him to "Bring it on" Anger? Absolutely. This is the emotion I felt before any sadness.

There was a point before receiving my initial diagnosis where I did a little bargaining. I imagined the phone call from my doctor. I imagined how I might feel if he said, "Oh you silly goose, nothing is wrong, you don't have MS, so go and be happy." I told myself that despite the fact that I hate running and have never done it in my life, I would run a marathon. I don't even know where this idea came from but it was there. If I didn't have MS I would run for people who did. I imagined other things I would suddenly do if I was told I didn't have MS. I would become the athlete I never was. When you are waiting for life changing news you come up with some far out thoughts. Needless to say, I am not running any marathons lately.

This element to grief is not new to me. But each depression has its own special nuances. I began to see people who were disabled or in wheelchairs everywhere I went. It was as though they were out in full force after my diagnosis. I wondered if I was looking my future. I sobbed at seeing one of the last clips of Richard Pryor who was struggling to talk and being pushed in a wheelchair due to his MS. I wept after a walk on the paths around my house and my MS kicked in. As I hobbled home, some people passing by stared at me. It was the first time I could not hide my disease. I could no longer pretend this wasn't happening to me. I have woken up in tears from nightmares that I am with my children and I cannot help them because in the dream I cannot move. Some days I feel like a failure. I feel as though my body has betrayed me. There are times when I feel broken and weary in body and spirit. Sadness? Yes this is a part of the grieving process and there is no avoiding it.

There is a part of me which has accepted this all along. I have a life philosophy that suffering is part of the human condition. Everybody suffers. I gave a speech at a conference some months ago. One of the other speakers was a man named E-Patient Dave. He gave one of the most moving talks about his battle with cancer. As he spoke to the crowd he warned us all, "Your time is coming." What he meant by this was, everyone will have to deal with some sort of medical condition or disease in their lifetime. Living with a chronic medical condition is not unique. But what is unique is how each person deals with it. I have felt fear, anger, and a bittersweet sadness over my diagnosis. But I have also felt an incredible joy for those moments in time when I am feeling good. I don't take anything for granted. My diagnosis with MS has made me realize that time is precious. Who knows how long any of us have on the planet? So while we are here we might as well make the best of it. A huge part of my healing and acceptance has been to share my story with others. If I can help someone else by sharing my experiences, it gives my life meaning and transcendence from the pain. Does acceptance mean that everything is hunky dory and you no longer cry or get mad about this? No. But it does mean that you find ways to survive each day and find those moments of happiness and gratitude in between.

I will end this here. But I do want to add that no matter what you are going through you are not alone. There are so many other people struggling to cope with their own set of troubles. Share your story. Find others to lean upon. Hope is always present even between doctor's visits. I have told you my story. Now I want to hear yours. If you have a chronic medical condition tell us how you are coping. We always love to hear from you.
In addition I am adding some links here to other Health Central sites where our members and writers have talked about grief with relation to other medical conditions. I hope that you will visit these other sites as they have much information and support to offer.

Anne Windermere
Meet Our Writer
Anne Windermere

These articles were written by a longtime HealthCentral community member who shared valuable insights from her experience living with multiple chronic health conditions. She used the pen name "Merely Me."