Chronic illness involves more than physical symptoms. There are the psychological and emotional symptoms as well. These, along with the physical, demand immediate attention, can disrupt the family, and include losses. With MVPS/D there is also the fact that many physicians won’t or cannot help the patient. As one woman put it, “I’d have gotten more medical attention if I had had a heart attack.”
A phrase you will read often in this book is it is natural. All the odd feelings are natural when your life has been hit with a chronic illness. It’s natural to worry about your health, family, and job. You are facing the unknown. It’s as though you’ve been dropped off in a foreign country to be tortured. Friends make no contact when you cannot attend social activities. You feel completely alone when even physicians will not take you seriously. Because they react that way, you feel guilty and inadequate. Anger threatens to overwhelm you. You squirm over thoughts relating your heart to illness. You’re scared for the lack of control. The longer the illness goes undiagnosed, the lower your self-esteem gets. Usually with a crisis, you physically work off tension, but with an undiagnosed chronic illness, you live in another world almost unable to cope. If you must take medications, there are the side effects to deal with. You feel as though you are in a salt timer, your life turned upside down. These are natural feelings and concerns.
“Part of us does die when we can no longer live as we did in the past,” said the Rev. David W. Carlisle, DeKalb, IL former district superintendent of United Methodist Churches, in one of his sermons.
When I first experienced valve pain, I knew it was an attack of some kind. However, my mind wouldn’t allow me to consider it a heart attack.
I stood, looking out the front door, with my nose against one of the small panes, and thought what a terrible situation I was in. While my gynecologist did his best to refer me to various specialists, I couldn’t be assured this new physician-an internist-could help me. At least he had listened and hadn’t sent me away without help. After the treadmill test, I could barely move from the fatigue. Each day the tiredness grew. I felt so defeated and sad.
Suddenly a crushing pain smashed my chest with such force, I couldn’t breathe. My mouth stretched open like an opera singer’s as I gasped for air. At the same time I stepped backward in a feeble but instinctive attempt to get away from the pain. After four giant steps, a sharp, sword-like pain rammed through me near my breast bone, doubling me over. Then all pain was gone. And I stood in wonder that so much had happened so fast.
I immediately phoned my new physician, who told me to get to the local emergency hospital to check if it had been a heart attack. After a cardiogram, we knew it wasn’t, but what could cause such severe pain? A prolapsed mitral valve.
The pain was like a slap in the face. I couldn’t live gasping and doubled over in pain. And I never wanted to feel it again!
Fear grasped me by my neck. What if this new physician couldn’t help me? Or wouldn’t. He seemed sincere, but what if he passed this attack off as nothing since it wasn’t a heart attack?
One evening my two older children cornered me to ask if I was dying. I laughed but quickly realized how serious these young ones thought. Was their mother going to be with them at Christmas? What was this strange sickness that eluded the physicians? Yet they wanted to be let in on any health secrets. Fear breathed in their emotions like oxygen in their bodies.
Later, before a judge at my disability hearing, my husband revealed he had the same fears. “When I come home, I never know if I’ll find her dead or alive.”
This illness had arrived at a time when I was headed out into the world to do my thing. I’d raised our children, though the last one was only two when this illness started. And now it was my turn-my rightful turn-to start my journalism career, to help with the family finances, and to move beyond home work to business work. I was angry at the illness for coming now and at God for allowing it. Later as I learned how to live with my symptoms, I had to sort through this anger and realize that my identity could not hinge on what I do.
My youngest child reached in anger toward me and indirectly toward my illness. She needed attention, both disciplinary and loving, but I couldn’t give it to her in the way she wanted.
I slept most of the time then. Just fell back on the bed and I would be out. I refer to it as my two-month sleepathon. I’d wake to get the older ones off to school and feed my youngest, then awake again to feed her at noon, and again to make dinner (sometimes my husband did this), and finally to put the children to bed. Then I slept all night.
Something had to be done for my youngest child, even if I couldn’t give it. A neighbor with two small children about my daughter’s age joyfully took her two mornings a week in an attempt to get some discipline into her life. Always, in my deepest anguish, it was this daughter and her need for a mother that pulled me up and out of my self to find the answers.
My husband’s anger was directed toward the physicians. “They only practice medicine,” he’d say in a rough tone. The entire family agreed in theory. Why could the physicians fix others, and not me, so they could go about life, even if the illness was cancer? Why did they disbelieve me about my symptoms? Why were our prayers-years old-unanswered?
One thing I knew, if I had enough energy to be angry, that was good. It takes energy to form anger. And I would not waste my energy on anger; I would channel it to find what was wrong while I cared for my family.
Out of anger rose frustration. Frustration toward anything. Everything seemed to go wrong. As I learned, it’s how one views situations. If you’re joyful and happy, even the toughest frustration is seen in light. When one has been continually frustrated, denied, and rejected, pretty soon you become like Pavlov’s dog, conditioned to expect things to go wrong. All doom and gloom. For years it felt as though our family lived in muddy waters because of my illness.
Need I explain the why of depression? How can one not be depressed when she knows she’s ill and every physician who examines her says she’s fine or there’s nothing he can do for her? The topper was when a physician told me I’d have to live with the pain. Pain is an indication something is wrong with a body. It might be as simple as tension, but a headache will alert you to that.
At Mayo Clinic a physician told me I could not have as many kinds of head pain as I described. What did that mean? My immediate remark was, “Then you take some.” But the physician saw no humor.
I tried to alleviate my depression by throwing my problem away, to God or whoever out there. I tried my hardest to make peace with life, thinking that would help with the depression, but it didn’t.
Depression is a natural reaction to long-term or chronic illness, especially when it has not been named. I found trying to suppress the feelings only made me worse so that often I cried and blurted out unkind words to my husband, afterwards apologizing to him. He always forgave me.
One time when a woman expressed her concern about me, saying she often thought of me, I answered with my anger. “But not enough to phone or come over.” Our eyes met, and I saw her hurt. I wanted to take back the bitter words, to undo the situation, not pass on my resentment. Later I told her I was sorry, but mending our relationship took time. She finally told me she realized how hurt I was because she had never heard me speak that way to anyone. Yet my anger from depression could have murdered our friendship.
There is a time, a place, and a good way to release emotions, and there are wrong times and ways. I should have received the woman’s words with gratitude and in the manner with which she gave it. I learned the hard way.
When I left the hospital, I felt extreme helplessness. I’d been admitted to the cardiac unit by my good physician for a week. While there, many of my symptoms came to light for him to observe.
Then he said I could go home. What? Leave my life-support system? This was the only place I felt safe, the only place I had received medical attention. If my body went out of control, I simply pushed a small black button, and a nurse appeared by my bed like an angel.
If left not faced or untreated, this fear can grow into agoraphobia, a term for fear of open, public places.
Again this is natural not to want to leave a secure environment. We have to learn to manage our environment and reduce our fears. We have to rebuild our confidence and relearn how to balance our lives. And this includes the family.
Other people don’t know how to handle chronic illness any better than we do. They have their lives to live, and they can’t stop point blank and sit at our bedside. That’s not what we actually want. A phone call, a visit, a letter or note, some form of communication that tells us of their continued involvement in our lives.
Most people wanted to give answers. Perhaps I had allergies or chronic fatigue syndrome. Perhaps I should go to a headache clinic. And when their answers ran out, their presence went with them. I knew they only wanted to help, but what I needed was their support, their faith in me, and their nearness. That disappeared when I could not socialize. I felt ignored and rejected by even more people. I felt abandoned by the physicians. How could they simply ignore my pain? What about their Hippocratic oath?
I also felt lost, in limbo, during this time. Again, it’s natural to feel this way. I doubted I could ever return to my life prior to surgery. But what about the future? I couldn’t live like I was-which was where? I could feel myself failing physically. Could I ever be that journalist, that editor I had trained to be what seemed so long ago? Yes, I came to be a successful online book editor and writer. Yet at that point in time I doubted that, also.
Sickness can wreck havoc on any relationship, especially long-term ones such as marriage. When a friend’s husband left her because he couldn’t handle her chronic illness, muscular dystrophy, she had a nervous breakdown. How could she support three children when she couldn’t work outside the home? “I just went crazy,” she said. “I couldn’t handle that kind of responsibility, knowing what the answers were.”
For my friend, disability didn’t apply because she had worked only in her home. She solicited a sensible, reliable attorney who won her child support and alimony. With counseling and financial support, she got her life together, and she and her children are doing well.
Your children, depending on their age, need to know what is happening in your life for it does affect them. My youngest daughter, only two at the onset of my symptoms, has never had the mother my other two children had. I could not play baseball and other sports with her. I could not attend many of her band concerts. I could not be a room mother or accompany her at music competitions or go as a chaperone on field trips. And I had to explain this to her at her level of understanding.
Your parents, your sisters and brothers, aunts and uncles, all those close to you are affected by your illness. They might want to help you, they might out rightly disbelieve you, and all the in between. Your illness affects everyone in your life.
All these emotions and related feelings are natural for our situation. That phrase, it’s natural, should put a small part of you at rest. It should give you hope that you are responding naturally to a life-changing illness.
“You are not crazy,” Kristine Scordo, PhD. and director of the Cincinnati MVP Clinic, assures us. She is also author of the book, Taking Control: Living with Mitral Valve Prolapse Syndrome.
You are sane and have good inner responses you can listen to, even if physicians, nurses, friends, and relatives don’t believe you. Never consider yourself crazy or inferior because of your illness. You need not feel inadequate because of being ill. You are as special with chronic illness as you were before it.