Feeling Alone

Chronic illness isolates. Who wants to hang out and have fun when taking a shower uses up half our energy for the whole day? Chances are we would be a wet blanket anyway. What if we have to go home or nap or get to a bathroom really fast? If we say yes on Tuesday, we may just have to cancel on Thursday. Chronic illness is not a respecter of calendars and appointment books.

But there is another kind of isolation. You know it by this intense, stabbing feeling of aloneness. You don’t fit. Life is going on and you are 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’s like to be you. You feel cut off, isolated, terribly alone.

Time for a reality check. You are the only one who can feel what you are feeling. They are the only ones who can feel what they are feeling. We can care for each other, but we cannot feel for the other. We can stand together in the stream of one another’s pain, but not take the pain from each other. When you change your expectations, you may find that someone has been standing with you the whole time!

Everyday Blessings

When we are in pain or afraid, it’s darn near impossible to give thanks for anything. But humor me for a minute, you have nothing to lose. As you go through the day be aware of all the people and things you encounter and find something about each for which you can be thankful. Wake up: give thanks for a bed, sheets, pillow, roof over your head, walls around you, floor underneath you and all the people who made those things. Bathroom: give thanks for running water, toilets, hot water, sinks, showers, towels, and toilet paper. Have breakfast: give thanks for food and the people who grow it, cups, dishes, silverware, refrigerators and stoves and the people who work in power plants. The possibilities are endless. What are your everyday blessings?

When Positive Thinking Is Not the Answer

“Just think positive, and you will be OK.” Well, yes and no! Positive thinking has a very important role in chronic illness-but more about that another time. When “positive thinking” means ignoring the emotional pain of a diagnosis of chronic illness, when “positive thinking” means ignoring the pain of grieving for the losses in your life and hopes and dreams, when “positive thinking” means denying what you feel then it’s not a good thing at all.

Feelings buried alive don’t die. The only way out is to go through the pain. And on the other side of the pain is the place where positive thinking lives.

Being Sick Like a Child

What happened when you got sick as a child? How did the adults in your life react when you got the chicken pox or strep throat, a cold or an ear infection, a broken bone or a stomach ache? What did you learn about being sick? Did people fawn over you, acting like you were a fragile piece of China that might break? Did they act like your sickness was an annoyance and an inconvenience to everyone? Did they make you keep pushing even when you were sick? Were you believed? Where you told it was all in your head? Were you blamed for getting sick? What did you learn about being sick?

Now think about being an adult with a chronic illness. Which reactions are the same? Are you expecting the adults in your life now to act like the adults did then? How is this impacting your relationship with lovers, family, friends, and yes, even your doctor? Is it time to learn to be sick like an adult? We get to chose.

Why Me?

Why me? Why now? There is so much I haven’t done yet. Is this the beginning of the end? I’m not ready. What did I do to deserve this disease? I must be a bad person. This must be a punishment. Did I cause this disease? If only I had exercised more, eaten better, stopped stressing ya da ya da ya da. Will I lose my independence? My mind? My life? My hopes and dreams?

Why not me? Why not now? Are there things I can still do? Am I still breathing and thinking and reading? Is anyone ever ready to have a chronic illness? Can all this wondering, worrying and blaming change what’s happening right this very second?

People get sick and people die. We all know that. We just have a hard time believing it will happen to us. Every second we spend trying to answer these questions is a second we have lost in the present moment. Every ounce of energy we use pondering these questions is an ounce of energy we could have used to learn to manage our disease. Yesterday is a cancelled check. Tomorrow is a promissory note. Today (and this minute) is cash in hand. Spend it wisely.

When Denial Is a Good Thing

The accusation, “You’re in denial,” hurts when it’s true. The accuser hopes we will be shocked into reality. We don’t hear the accuser’s care and concern for us. No! We hear judgment. Not only are we sick, but we are weak personalities who can’t even face the diagnosis. We need another person to make us face the music. The implication is that denial is a very, very bad thing and that we are very, very bad for being in denial for even the shortest time.

Denial protects us from facing what is too horrible to think about all at once. That’s OK, in fact, it’s a good thing-as long as we don’t stay there forever!

Stranger in a Strange Land

“Everyone who is born holds dual citizenship in the kingdom of the well and in the kingdom of the sick. Although we prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” (Susan Sontag in Illness as Metaphor.)

Chronic illness picks us up, plops us down in the kingdom of the sick and locks the gate behind us. We might just as well have been transported to a village in Tibet or the jungles of Africa. We have to learn a new language. It took me forever to learn to spell and pronounce systemic lupus erythematosus, mycophenolate mofetil and pancytopenic anemia. And there are shorthand terms to learn like CBC, CMP, sed rate, ANA, and on and on. That’s not all! There is a brand new culture, the culture of medical providers. All the things we know about how two people interact are out the door.

Immigrants who succeed learn the language, the culture and how members of society interact. If they can do it, so can we!

The Symptom Journal

“White coat syndrome” can leave you stumbling over your words and cause you to forget the important things you wanted to tell and ask the doctor. What to do? Keep a symptom journal. A few days before your appointment, read through your journal looking for patterns. Write that summary down and bring two copies to your appointment-one for you and one for the doctor.

What should you write in your journal? Keep track of when you take your meds, any unusual reactions, changes in routine or diet, and your symptoms. In your summary be sure to cover these points:

• When did you first notice the symptom?
• How long does the symptom usually last?
• How often have you experienced this symptom since your last appointment
• What makes it worse?
• What makes it better?
• Does the symptom prevent you from completing activities of daily living? In what way(s)?
• Rate the severity of the symptom on a scale of 1 to 10. (10 being the worst.)
• Describe the symptom as clearly as you can. For example, if you have pain describe it as sharp, dull, throbbing, shooting, stabbing, running down your arm, cramping, etc.
  

The doctor will not read your whole journal! Your work as a patient is to report symptoms clearly, concisely, and accurately. The doctor’s work is to pay attention to those symptoms and use that information in diagnosis and treatment. It’s all about team work!

I Finally Know What It Is!

If you had been suffering from symptoms for a long time, you were probably relieved when you get a diagnosis. It’s an “A-ha” moment. Your problem finally has a name. And if you, like most of us, doubted at times that you were really sick, now you have validation. And for all those who doubted you, you have vindication.

The time of wondering and self-doubt is over and you are ready to get to work and fix this thing-not so fast. First of all, there is no cure. The treatment plan is aimed at slowing or preventing permanent damage and easing the symptoms, not eliminating the disease. Then you find out that there is no simple formula for your treatment. One person improves on this medication and another gets worse. The flush of relief at the diagnosis quickly turns into uncertainty and frustration.

This is the time to resolve to establish a good relationship with your medical providers. Keep a journal of your symptoms to help your doctor evaluate the effectiveness of treatment. Learn to be specific when you talk to the doctors, and expect the doctor to answer your three most important questions at each visit.

Get Well Soon

If you break your leg or have your appendix out there are little niceties and social rituals that people do. They send flowers and cards telling you to get well soon. When you first come home from the hospital, they offer to bring food or help you out. They ask if you are getting better, and you probably are. After all, we expect people to get better once they receive the right treatment.

Just maybe, if your diagnosis with a chronic illness was dramatic enough, you will get cards, flowers, visits and well wishes. But if your diagnosis was not dramatic, there will be no social rituals. Your life has changed dramatically. Yet, many of the people you know will hardly notice. Some will acknowledge your illness and go right on with their lives. A few may offer to help at the beginning. Some will ask if you are getting better. After a while, you may find yourself saying yes either because you are tired of the question or don’t want folks to think you are a hypochondriac, lazy or crazy.

The whole word doesn’t have to know about the details of your medical condition. Most people don’t need to know at all. Explain it to the people who really care about you, but don’t make it the center of every conversation. And always remember, you are not our illness.

Acute versus Chronic Illness

People get sick. If they don’t get better on their own, they go to a doctor. Diagnosis is not too difficult. Treatment is ordered and the patient recovers, or in some cases, dies. Chronic illness can start slowly and take years to diagnose. Chronic illness does not go away on its own, in fact, it never goes away. Chronic illness may not be a death sentence, but it sure is a life sentence!

If the bad news is a life sentence with our illness, what’s the good news? The good news is that we can control our reaction to the illness. The good news is that we can create a new normal for ourselves. We don’t have to be our illness. Norman Cousins sums it up in these words, “Never deny a diagnosis, but do deny the negative verdict that might go with it.”