Grieving Is a Normal Part of Living with a Chronic Disease like RA
Dealing with a chronic disease like rheumatoid arthritis can bring about a whole host of emotions. The emotions vary over time and during courses of the disease from initial diagnosis, dealing with the ups and downs of treatments working or not working, and lifestyle changes brought about by the impact of rheumatoid arthritis.
How do we explain grief?
Like with many ideas, scientists and researchers like to reduce things down to simplistic models. Grief is no exception and many have heard of the so-called stages of grief first proposed by Elisabeth Kübler-Ross in her 1969 book On Death and Dying. The initial model included five stages including denial, anger, bargaining, depression, and then finally acceptance. Kübler-Ross’ model was originally applied to death and dying but has been applied to all sorts of traumatic life events.
Applying stages of grief to chronic illness
Being diagnosed and dealing with a chronic illness certainly rates as a traumatic life event. If you’re dealing with rheumatoid arthritis even if for a short time, you can probably relate to the stages. At first, we deny it when the doctor says those ominous words, “You have rheumatoid arthritis.” We think that it couldn't be affecting me. Then we may get angry and cry “Why me?” Bargaining may take the form of making deals with ourselves or others to avoid facing the truth. We then sink into depression believing that there will be no way out of the situation. Finally, acceptance settles in as we learn to cope with the serious life changes. Read any number of online RA discussion forums and you’ll see all of these stages displayed in some form or another.
The problem with the grief stage model
The problem with stage models is that people don’t always go through each stage in a linear fashion, each stage cannot necessarily be accurately predicted, and the stages don’t always apply equally to all contexts and people. More recently, psychiatrists and psychologists questioned the stage model and began to define grief as a process.[i]
Grieving is not a linear process
An article from Drs. Zisook and Shear present an excellent overview of the topic of grief.[ii] In commenting on the so-called stages of grief, they state, “However, most modern grief specialists recognize the variations and fluidity of grief experiences, that differ considerably in intensity and length among cultural groups and from person to person.” They argue that grief is a process that takes time and manifests as a wide variety of symptoms emotionally, cognitively, socially and behaviorally.
Experiencing grief with chronic illness
We know that a chronic disease can be stressful and is likely to bring about grief due to various forms of loss involved whether that is work, relationships, physical capabilities, etc. Dr. Meeks, a counseling psychologist, wrote an article in Psychology Today about grief. [iii] He points out that grief may bring about a variety of emotions including sadness, anxiety, feelings of helplessness, anger, shame, loneliness, disbelief, and guilt. Physical symptoms of related depression can include sleep problems, changes in appetite, and fluctuations in energy levels.
How can we deal with grief better?
Dr. Meeks gave some good suggestions to dealing with grief. Some physical aspects include eating a good diet, getting rest and sleep, and exercise. Of course, these may not be so easy with RA! He suggests making meaning of what is happening. Many people with RA learn to re-imagine their lives in new ways and find how their new lifestyle strengthens and re-purposes them.
Dr. Meeks suggests that making time for the grief while at the same time making time for regular life activities is important for creating balance. He recommends not judging our feelings - allow space for the feelings without letting them run over us. Finally, he states that we need to utilize constructive coping mechanisms to create distractions.[iv] Make time to enjoy the things you love.
See grief as a normal part of the processes of dealing with a chronic disease like RA. Understand that you will likely face various periods of grief and relief over time. Learn to deal with it effectively and please seek professional help and treatment if needed.
After the past 2+ years, how do you feel about telehealth appointments to manage your RA?