three. Impact of Chronic Illness on Social Relationships
Natasha M.'s comment:
I never go out anymore. How can I? I never know when I will have to get to a bathroom really fast! It's so embarrassing. I have to be so careful about what I eat. People are always telling me to try just a little of this or that, one slip wont hurt. They are so wrong. I don't want to offend anybody, but I don't want to make my disease the topic of conversation. Most of the time, I am too tired to entertain. And even when I am around people, I have nothing much to talk about. I don't work. I don't go out except to the doctor. I just don't fit anymore.
Why do I feel so isolated?
Chronic illness isolates us. The rest of the world seems to be going on about their business while you are left on the outside looking in, with your disease your only companion. Society has rituals for dealing with illness. If you are just a little sick, people will wish you well. If you are medium-sick people may even offer to help you out. If you are extremely sick, they will send flowers and cards, offer to go shopping for you, or bring you cooked meals. All of these rituals are based on the model of acute illness; that is, you get sick, then you get treated, then you get better (or die). When you are first diagnosed with chronic illness, people may experience all of these things. Then they expect you to get better. When you don't get better, most people feel like they have "done their duty" for you and go on about their lives. You take your disease by the hand and slink off into the shadows.
Some people will avoid you because you represent something terrifying—their own frailty and their own mortality. If you got this disease, that means they can get an incurable disease too! Let's face it, we all think we're invincible most of the time. When you have to look in the eyes of someone who has cancer, diabetes, epilepsy[1], or multiple sclerosis[2], you can't continue to ignore the fact that sooner or later everyone dies, and some of us get sick a long time before that. You now represent sickness, vulnerability, loss of control, and death. Others might avoid you in order to avoid the reality you represent. But you don't get to avoid that reality. You live with it every day.
Others feel awkward around sick people. They don't know what to say. "Get well soon" doesn't seem right when there is no cure in sight. They are afraid that if they talk about their own lives and activities, then you will feel worse because you can't do those things anymore. Over and over the discussion seems to come back to your illness or to an uncomfortable silence. In time, you and the others have less and less in common. Friendships and relationships falter and sometimes fail altogether.
You may contribute to your own isolation, whether you realize it or not. Healthy people take the greeting, "Hi, how are you?" to be nothing more than that, a passing greeting. But you feel isolated. You want to tell someone how you really feel. And you do tell them. You get nauseous from the drugs. Your bones and joints ache and creak. The doctor is sending you for a CT scan[3], magnetic resonance imaging (MRI)[4], or is putting cameras in your body where no cameras ought to go! Who wants to listen to that? Nobody I know!
As acquaintances fall by the wayside, you rely more and more on partners and close family to relieve your isolation. It's easy to forget that your loved ones feel as helpless as you do. They want desperately to do something to help you. When you spend all of your time trying to get them to understand how you feel by endlessly explaining your symptoms, they feel even more helpless and frustrated. Is it any wonder you feel isolated?
You may turn down invitations because you don't know how you will feel. If you say yes on Tuesday for a Thursday event, you may crash before then. You are afraid to say yes and then cancel. You worry about what people will think of you. Perhaps your disease manifests itself in some obvious way like seizures or having to run to the bathroom unexpectedly. You don't want to face the embarrassment so you don't go out. Or your pain and fatigue make the mere idea of socializing overwhelming.
But there is another kind of isolation. You know it by this intense, stabbing feeling of aloneness. You don't fit anymore. You are a stranger in the land of the healthy. Life is going on, but your life is on hold. You wish just one person could really be there with you, understand your experience, and feel your pain. And no matter how nice they are, the healthy folks just don't get what it is like to be you. You feel cut off, isolated, terribly alone. Isolation leads to depression, which in turn leads to more isolation.
- [1] A neurological condition that sometimes produces brief disturbances (seizures) in the normal electrical functions of the brain.
- [2] An autoimmune disease that affects the myelin sheath (covering) of the nerve pathways and disrupts communication to the muscles and other parts of the body.
- [3] A non-invasive medical test. CT imaging combines special X-ray equipment with sophisticated computers to produce multiple images of the inside of the body. These cross-sectional images of the area being studied can then be examined on a computer monitor or printed.
- [4] A non-invasive medical test. MRI uses a powerful magnetic field, radio frequency pulses, and a computer to produce detailed pictures of organs, soft tissues, bone, and virtually all other internal body structures.
