A few years ago I found that my MS was becoming more of a burden for my loved ones as well as for myself. I was missing out on so many ordinary things: work, family outings, time with friends, holiday get-togethers, and so on. Plans were constantly being modified or cancelled. One of the biggest ramifications was the loss of my driving abilities for eight weeks when I had to rely on family members and friends to get me to my job and take me to run errands. And the loss of a steady income caused my husband and me to accept financial help from others. Tough break and it all weighed heavily on my mind as I tried not to feel guilty about all the trouble my multiple sclerosis was causing in my life. I began therapy around this point and learned a few valuable lessons about guilt. I wrote this article a couple of years ago for Suite101.com, and the information still holds true today:
“Multiple Sclerosis Guilt”
A very real and harrowing side-effect of multiple sclerosis is guilt. Those with the disease feel it for a variety of reasons: they can’t do all the things they once could, plans often have to be cancelled due to the condition’s unpredictability, people don’t understand the “silent” symptoms and consider MSers lazy, and the list goes on. On the flip side, those who are affected by someone with MS harbor their own guilty feelings, often because they feel helpless or punished by the disease’s effects. Reality checks as well as coping strategies can counteract needless bad feelings.
The first form of guilt, something the MS sufferer contends with, can manifest itself for various reasons. People with multiple sclerosis can have a very slight to rapid decline in mobility. Whatever the level, bad feelings can emerge because the patient finds himself or herself less capable than before. Even a small decline reminds a person that he or she might need other people’s help for what seem like simple tasks. A big problem that stems from the unpredictability of this disease is the guilt associated with cancelling plans. It is so hard to keep a normal schedule when MS rears its head whenever it wants. Multiple sclerosis sufferers worry that others “just won’t understand.” Another problem is that silent symptoms, or those only apparent to the sufferer (tingling, heat sensations, pains) can make the person with MS appear lazy because they look fine on the outside. Perhaps the hardest guilt-trip to get over is the question, “Did I do something to cause this disease?” A lot is still unknown about multiple sclerosis, including its definite origins.
Caretakers, family, and friends are no less sabotaged by guilty feelings. They are upset that they cannot do anything to stop MS. Helplessness breeds guilt. It is difficult to watch a loved one deteriorate, even a little bit. While watching this happen, another sort of guilt can set in: family and friends are fine, while the multiple sclerosis sufferer is being attacked by his or her own body. This is much like the emotion felt by a person who is spared in an accident, while someone else is badly injured. Maybe the secret guilt of being angry with an MS sufferer is the hardest to bear: limitations and burdens caused by the latter can breed resentment on the loved one’s part.
Guilt needn’t be an out-of-control emotion. Sometimes a reality check is necessary. Regardless of the levels of disability, both multiple sclerosis sufferers and their loved ones need to realize that this disease is life-altering. There are not always quick fixes and problems are to be expected. People can learn to stop beating themselves up over uncontrollable circumstances: coping strategies for everyone include therapy and/or support groups (both in-person and online) to learn techniques for dealing with MS. A great way to find in-person support is to contact a local hospital. Depending on the level of disability, a person with multiple sclerosis can gain the support of occupational and physical therapists (for better independent functioning), friends and family, and spiritual groups. Family and friends can do the same by accessing caretaker support groups as well as at-home care for their loved ones. As some say, guilt is a wasted emotion, and controlling it is a wise step towards overall better health. Find out more about guilt derived from chronic illness in the article Guilt in Autoimmune Disease by Elaine Moore.
