Arthritis and Grief

“At the time of diagnosis, you may grieve the loss of your expectations of what life was going to be like. You may be planning that in a few years you’ll retire and travel the world. Now you realize that life is going to be different than what you thought or hoped it would be. That causes a grief reaction,” explains Kenneth J. Doka, PhD, grief expert, professor of gerontology at the Graduate School of The College of New Rochelle in New York, and senior consultant to the Hospice Foundation of America.

Because arthritis is chronic, Doka says, you may encounter new losses and ongoing grief over time. For example, grief may hit you if you have to give up a beloved sport or hobby, or you are prescribed a more aggressive medicine, or you have to switch to part-time work. 

“When you face chronic disease, grief is more than emotion,” explains Doka. “You have different reactions, some of which are a wide range of emotions. But for some, grief is not just an emotional experience. You may have physical, mental, spiritual and behavioral reactions. Equating grief as only emotion can be quite invalidating for people who don’t respond strongly in an emotional way.”

The once-popular five stages of grief model suggests people process their feelings in the following order: denial, anger, bargaining, depression and acceptance. But no studies have shown that these linear stages of grief exist. You may experience any or all these emotions during your grieving process. They may not happen in a particular order, you may move back and forth between emotions, or you may have different reactions altogether.

Possible reactions to the challenges of living with arthritis include:

• Physical reactions: hyper-awareness of your body, headaches, appetite changes, sleep problems, lack of energy.
• Cognitive reactions: not thinking clearly, lack of focus, excessive worry.
• Spiritual reactions: feeling closer to your beliefs, feeling betrayed by your beliefs.
• Behavioral reactions: skipping activities, avoiding friends, inability to sit still.
• Emotional reactions: anger, guilt, numbness, apathy, anxiety, sadness, despair, denial, bargaining, depression, acceptance.

Some people dealing with a chronic disease end up in a perpetual cycle of grief. In psychology, this may be known as complicated grief or chronic sorrow. It can happen when the disease brings on new losses over time and affects a person’s self-identity. A common aspect of perpetual grief is fear of pain and disability.

There is no right or wrong way to experience grief, though some thoughts and behaviors can be more helpful than others. Some positive coping ideas from the American Psychological Association and the Canadian Counselling and Psychotherapy Association include:

• Allow yourself to feel whatever you feel.
• Face your diagnosis and life with arthritis head on.
• Develop an action plan – start by writing down questions for your doctor.
• Control what you can – eat healthful foods, exercise, take your medicines.
• Reduce stress – try meditation or yoga, avoid people who are not supportive.
• Seek social support and build a network of positive friends and family.
• Be patient with yourself – ups and downs are expected.
• Adjust your self-identity – embrace the person you are today.
• Seek counseling if your self-care measures aren’t helping.

“At times, you may accept your arthritis as part of your life and who you are,” explains Doka. “At other times, you may not. It’s all part of the grieving process.” If you are able to grieve for the person you were, you will be able to better accept the person you are today.