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 won’t 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.
Epilepsy
A neurological condition that sometimes produces brief disturbances (seizures) in the normal electrical functions of the brain.
Multiple sclerosis
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.
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, magnetic resonance imaging (MRI), 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?
CT scan
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.
Magnetic resonance imaging (MRI)
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.
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.
What can I do about isolation?
First, accept the fact that some people can’t handle being around people who are sick. You can’t control them or what they do, but you can control your reactions. You can choose to obsess about these people or you can choose to put your limited energy somewhere more productive.
Second, be aware of what comes out of your mouth. What you say is a reflection of what you are thinking. Can you go through an hour with someone and not mention your condition? How about a day? Awareness of what you are doing is the first step to change.
Third, find a support group. Support groups and how to find them are dealt with in Question 93. Contacting a foundation that focuses on your disease is a good way to start.
Fourth, recognize that although chronic illness takes a toll on you, it also affects those who love you. Listen to your loved ones. Encourage them to share their own struggles with your disease. You are less alone than you imagine.
Finally, reach out to others. Write thoughtful letters, send cards, do little, unexpected nice things for people for no apparent reason. There are so many other people who are isolated just like you. “Reach out and touch someone” is more than an advertising slogan.
Why do I feel like a stranger to myself and others?
Chronic illness robs us of our identity, hopes, and dreams. Once the diagnosis is pronounced we will never be the same again. Susan Sontag, in her book Illness as Metaphor, writes that when we are diagnosed we become citizens of the land of the sick, only visiting the land of the well on a passport. We are foreigners in their world.
Once upon a time you identified yourself by your work, relationships, and hobbies; now you identify yourself as having “The Disease.” The Disease is the last thing on your mind when you fall asleep and the first thing on your mind when you wake up in the morning. Your hopes and dreams for the future are dashed. Your identity is gone. Without that identity, you are a stranger to yourself and to the people with whom you had relationships. You feel like a stranger because you have indeed become a stranger.
But the loss of identity gives us an opportunity to create a new identity, a new normal. Stripped of our identity as human “doings” we can learn to be human “beings.”
Peter J.’s comment:
I just don’t know how to make my family “get it.” I give them books. I show them things on the Internet. I tell them how I feel. They don’t seem to care. I asked my sister to go with me to my doctor’s appointment. She sat in the waiting room. Maybe if she came in with me, she would realize what this disease does. I asked her to come to the support group with me. Maybe if she hears what all of us are going through, she will understand. I keep trying but nothing works. What can I do?
How can I make other people understand what I am going through?
There is a scene in the movie Gone with the Wind where Melanie is about to give birth just as the Yankee troops are attacking Atlanta. Scarlett O’Hara and Prissy, the young slave girl, are her only attendants. Prissy goes to get a knife to put under the bed because, “Mama says it cuts the pain in half.” Wouldn’t it be nice if that worked? When we are suffering the effects of chronic illness— pain, fatigue, fear, loss of control, anger, despair—we want to cut the physical and emotional pain in half. We think that if the people around us could just understand what we are going through, our suffering would somehow be reduced. Like the knife under the bed, it doesn’t work.
While it may be comforting to have people empathize with you and stand by your side, ultimately each of us has to go through the experience alone inside ourselves.
This is a very difficult life lesson. It’s a lesson I learned while delivering my first child. I read all the books, attended the childbirth classes with my husband, made sure my doctors knew what my wishes were, and even visited the maternity ward ahead of my due date. I had my coach and my team, and everything would be just fine. The labor was 22 very long hours! During that time I realized that no matter who was with me, the contractions were mine, and the pushing was mine. People could be around me to do their part and to remind me what my part was, but the experience was mine alone.
Each person’s experience of chronic illness is unique to that person. And as in childbirth, we may have helpers, but ultimately we go through the experience alone inside ourselves. Patients in support groups frequently complain that their healthy partners and others, “Just don’t get it. They don’t understand.” They don’t. They really can’t. They are not experiencing what the patient is experiencing.
You can get so hung up on making others understand that they get tired of your explanations and endless description of symptoms. The Disease with a capital “D,” and your efforts to make others understand, becomes your only topic for conversation. When that happens, not only do the others not understand, they don’t even want to because you have been driving them crazy. You drive them away.
The central question here is why do you need them to understand? Once you realize that their understanding will not change your situation, you can stop focusing on them and turn your attention to your own selfmanagement. Part of that self-management means asking for appropriate help and support when you need it but not expecting others to be able to walk in your shoes.
How does chronic illness affect intimacy?
When one partner has a chronic illness, incredible stress can be put on intimate relationships. Some statistics place the rate of divorce at 75% when one partner is chronically ill! There are many reasons for these statistics, and lack of physical intimacy is certainly one of them.
The illness itself and the side effects of medications can cause physical changes in your body that leave you feeling unattractive and undesirable. Extreme changes in weight, deformities, scarring from surgeries and procedures, hair loss, and other changes leave you wondering why anyone would even want to be intimate with you. If you don’t like yourself, why would anyone else like you?
Rather than risk rejection, you avoid the issue altogether. When you do that, you are making a decision for your partner. You have no right to do that. The result is that your partner feels rejected, and the relationship begins to deteriorate. Good communication skills are essential for partners to sustain a relationship in the face of chronic illness. If those skills are not already in place, go see a counselor who can teach both of you how to make your feelings and needs made known in healthy ways.
The constant pain and fatigue that often accompany chronic conditions are not conducive to intimacy, especially if intimacy is defined as an athletic sexual event rather than an emotional one. Redefining your perception of intimacy as close human contact, physically or emotionally, rather than a physical act, changes both partners’ expectations. The sick partner may long to be held, cuddled, or kissed gently but is afraid to make any overtures out of fear that the healthy partner will take these overtures as a signal that more is to come.
Of course, the healthy partner may be very happy to hug and cuddle if that’s what comforts the sick partner. But no one will know what the other is thinking or what the other needs without those needs being spoken.
The use of “I” messages is especially important here. “I would like to snuggle with you for a while. I feel good when we do that. I am afraid that you will think I want more, and right now, I’m just not up to that. Are you OK with this?” Again, a visit or two to a good mental health counselor can work wonders for communication skills that will preserve the relationship.
Pain can be a particularly difficult obstacle to physical intimacy. If this is a problem for you, talk to your doctor. He or she may have suggestions. You are not the first person to experience intimacy problems related to your chronic condition, and you won’t be the last. You deserve to have as full a life as you can. Why not ask for the help you need? If your doctor is unable to help you, consult a physical therapist. You will be amazed at what you learn. A woman who had both hips replaced when she was only 22 (she’s now in her late 40s) learned that having sex in the bathtub works best for her, as the water minimizes weight!
Should I tell people about my condition?
Chronic illness can be visible or invisible. You can’t hide the deformities that come with rheumatoid arthritis or the rashes that accompany psoriasis. But
many chronic illnesses are not apparent to the casual observer. If you have invisible chronic illness, you are faced with the “to tell or not to tell” dilemma. The decision of whether or not to disclose has to be taken on a situation-by-situation basis.
Of course, you will want to tell those people who are close to you like spouses, parents, siblings, and adult children. If you have young children, you will want to be more guarded, giving them information on a need to know basis. Children need to be children and not your confidant, primary caregiver, or a substitute for a support network. They do need to know, however, that there are times when you may not be able to keep up with what other parents are doing. In all your relationships remember that you are more than your illness. Don’t let your condition become the center of your relationships.
One of the frustrating things about chronic illness is unpredictability. You make plans for next week, only to find that on the day of the event, you are just too tired or sick to follow through. If your friends and acquaintances don’t know about your condition, they will probably lose patience with you sooner or later. If they know about your illness, there is a better chance that they will understand. Some people will become overprotective. They will remind you to rest, eat, or whatever, leaving you feeling like you are a helpless child.
Some people, however, won’t get it. Convincing them is not worth your limited energy. The decision to disclose is very personal. Remember that you can’t control how others will react or how they will treat you. The only reactions that you can control are yours.
Casual acquaintances really don’t need to know about your health. You don’t tell them how much money is in your bank account, or how often you floss your teeth, or about your crazy Uncle Joe. If you find yourself telling relative strangers about your illness, you might want to think about the possibility that you are letting the illness define who you are. When mere acquaintances ask how you are doing, they are being polite and not asking for a laundry list of your symptoms and ailments or a graphic description of your latest medical procedure.
Chronic illness in the workplace is a tricky issue. Employers and bosses, just like anyone else, will have preconceived notions about your illness. If you are doing your job and don’t need special accommodations, there is no good reason to disclose your illness in the workplace. Even if you have a great relationship with your coworkers, most of them are not close friends or family and do not need to know the details of your physical condition.
If you do need special accommodations, then disclose to only those people who need to know. Even though you are supposed to be protected under the Americans with Disabilities Act, the sad truth is, if your illness is perceived as a burden to your employer they will find a way to get rid of you. The best advice here is to be guarded when it comes to disclosing in the workplace.
Rheumatoid arthritis
An autoimmune disease in which the immune system attacks and destroys the joints.
Psoriasis
Chronic, autoimmune disease that appears on the skin. It occurs when the immune system sends out faulty signals that speed up the growth cycle of skin cells.