Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

When the Rules of the Game Change

I’ve been involved in the lives of those with chronic and other life-altering illness for over twenty years.  During that time I’ve become a pretty good observer of people as they go through the illness process. 

Yesterday I was watching one of my co-workers who within the last year was diagnosed with cancer.  The cancer is in his spine and the doctor’s have told him they can treat it like a chronic illness, but they won’t be able to put the cancer into remission.  When I was watching him at work I asked him if he was okay because his stride was different, and he had a slight edge in his face.   I asked him if he was in pain and the answer was a definite, YES!!

We began discussing pain medications and patches and they don’t seem to be taking enough of the pain away.  He’s in a job where he’s on his feet 10+ hours a day and is walking back and forth across a 60,000 sq ft. store.  Finally he turns to me and says, “Maybe I should just go out on permanent disability”. 

I stopped and asked what was holding him back and there wasn’t an answer.  I knew the answer and I bet you know the answer as well (as did he).  If he goes out on disability the rules of the game change.  The relationship he has with his body and the cancer change because the committee in his head is saying that the cancer is winning.

I’ve discussed many times that not everyone will live till their 120, nor will everyone get well, although they may get better.  Illness progression does mean that adaptability has to be your middle name.  However, if the rules of the game change learn the rules and play the game to the best of your ability.

My immediate thought was for him to go out on disability, ease the tension in his body, mind, and spirit and hopefully that would allow the pain medication to work better.  If that weren’t the case he could ask the doctors to increase the pain medication levels; the side effects may increase, but the pain would be eased.  The hope is that somehow he can increase his quality of life.  I know he loves his work, but it may be time to love himself more.  It may be time to focus on relationships and hobbies, and enjoy whatever days he has without pain.

The game will change, we just have to learn to live in the gray zone and figure out a way to learn the new game quickly and become a master at the new game.


I've lived my life in service to others. I'm focused on mental health and how it impacts our relationships, culture, and society. Through creative expression and narrative I believe we can impact change.

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