I am a newcomer, to the PH community in one sense and in another, an old soldier. As a child, although I was as skinny as a wisp I could never finish a race, to my dismay since I was a high achiever in many other ways. I would end up half way on the track, chest on fire and breathless. Then, everyone just passed it off as’ “you can’t run. Years passed and doctors said I was stressed. I was such a happy little girl I used to walk around the house singing my own composition, “nobody could be sweeter than daddy to me.” During my teens, the breathlessness persisted. The diagnosis was always stress.
In my young adult years I was diagnosed with pulmonary valve problems then rheumatic heart disease, ten years of monthly penadur shots. My heart failed and de-compensated, four weeks in hospital and missed death. My next real diagnosis was mitral valve prolapse with mild regurgitation. After several years of chest pain, breathlessness, palpitations, racing heart, more heart failure with no logical rationale, and good days and bad days, a diagnosis of atrial septal defect, then primary pulmonary hypertension, then secondary, then no pulmonary hypertension then back to stress, then idiopathic edema with no explanation whatsoever.
During all those years, I spent millions of dollars in doctor’s visits, tests, counseling, medication, and hospitalizations. After another hospitalization recently, for decreased oxygen, more tests, then thanks to the patience of one doctor in the whole world at the University of Maryland Medical Center, Dr. Myung Park, now, finally, there is a definitive diagnosis of pulmonary hypertension. Still, there is no etiology.
So many thoughts and mixed emotions flood my little heart and soul, but relief. The paradox is that at rest my pressures is 40 but on exertion during the right heart catheterization, my pressures went up to 70 with no explanation. I am not happy with the fact, but relieved by the fact that finally, I now know for sure that I am not a hypochondriac as I have been made to feel so often by professionals and friends.
I am a licensed social worker and was on the verge of applying to enter a PHD program about which I am not sure now until I gain more insight into this new experience and the prognosis. I have read the guide from cover to cover so I am aware of the implications of my diagnosis. This is not the kind of pain that I wish to speak about though. It is another pain. It is the pain that patients hardly ever get the opportunity to disclose but yet it is ever present and is of utmost importance. As a social worker in clinical practice I would like to mention it for the benefit of all persons with chronic diseases and to encourage them not to be embarrassed to disclose it because of the universality of its nature and the fact that it is of great benefit to do so.
"So many thoughts and mixed emotions flood my little heart and soul, but relief."
— Yunena Morales
The impact of a diagnosis of chronic disease is multifaceted. It has cultural, familial, social, psychological, clinical, and economical ramifications. Persons with chronic illness, especially those newly diagnosed, nearly all the time, experience a barrage of emotions. Family members also experience strong emotions that may include sympathy, empathy, blame, self blame, shock, feelings of inadequacy, fear, anger, and depression etc as part of dealing with the resulting trauma. I believe that the most overwhelming aspect in all this is the many faces of stress that naturally results. One example of the pain related to stress is, at times, the degree of cruelty that can occur among family members, and the general public, consciously or unconsciously. Very often, on airlines especially, I have been told by stewardesses and wheelchair assistants, that I do not appear to need a wheelchair or any help because I look very strong. More pain results in many instances than the diagnosed illness itself, yet it is hardly spoken about for many reasons, very often, because of the absolutes to which many persons adhere, and the sensitivities related to disclosure in families in several cultures.
This is an area where much needs to be done in sensitizing the “other” in relationships with chronically ill persons. Medical professionals should make every effort to reduce this stress in professional settings by arousing this awareness among themselves and other paraprofessionals who work with persons who are chronically ill. It probably would enhance the healing process along with medication and other required therapies in the healing process of such individuals
"Persons with chronic illness, especially those newly diagnosed, nearly all the time, experience a barrage of emotions."
— Yunena Morales
Patients with chronic illness fear the dependency related to debilitating illnesses. It is something they have to face and deal with or not deal with. It causes great stress and or distress. I remember walking into a PH clinic and greeting a couple. The gentleman was standing at a distance from his wife who was speaking to me. I felt their pain and suffering. She had a mixture of anger, disgust, burden and pain in her countenance and her tone but there was no word to verbalize what was expressed so loud non-verbally. The gentleman’s face spoke volumes in his brow and tightened lips as he glared at her. She did not look at him. I do not know if she was ignoring it or was not aware of it. Children experience this pain, parents feel it towards their children but many are embarrassed to own these feelings much more to verbalize their thoughts to other family members or associates who struggle to be kind and fail to do so. Disclosure is difficult and frightening at times. It can be done with discretion but many times only with professional help with families of the chronically ill.
Self disclosure when it is beneficial is another means of dealing with the other pain which persons with chronic disease experience. Let me take the lead and do some self disclosure to begin to talk about this pain that prompted this piece of writing. I had a very bad cold and coughed sonorously in the bathroom next to the dining room just before my sister sat to eat her cereal. She made a remark to me that I found insensitive and offensive. This led to brief argument needless to say. She then called a family member and I overheard her saying something about her and her disease. It went to my core and I took it very personally as I felt that it was a cruel thing to say. I began to mope and celebrate with another pity party and wallow in my own self pity which I truly believe I deserved as it is one of the few things I own. Humor always helps you know. I took up the Pathlight and read the whole thing from cover to cover to distract me. In the midst of this I began to think about how I could make my own contribution to PHA. The idea of writing about this other pain from a clinical point of view for the benefit of others came into my consciousness. I became completely absorbed with this idea. The very topic came to me which is the one at the top of this narrative.
From my own experience, emotional pain and loneliness appear to be natural companions on this journey and should not be suppressed, but just as the saying goes, ‘men don’t talk’, many patients do not speak about the many painful emotions they experience in their family. This type of pain touches family members in the depths of their being. Doctors may know that this other pain exists and that it needs to be dealt with or may not care to be aware that it exists. It is costly. Friends do not wish to hear it. It is oppressive to the ears. Sufferers do not want to be vulnerable. It is embarrassing to own this element of the self. What do we do with it then? How do we use these experiences to our benefit and that of others to heal the spirit?
"I learnt some time ago that no one except me is responsible for my own happiness."
— Yunena Morales
Well my first suggestion is to own our own realities, meaning our own emotions of pain, anger, shame, vulnerabilities and dismay. I am sure each of us can add to this list. Count life’s blessings, there has to be even one. Remember the joys that you have had. I tell myself that if I stay in my misery I will become insensitive in the long run and just as unhappy as the oppressor in my eyes. Ask your self where the idea comes from that every family member or social contact must understand, love and speak kindly of all chronically ill persons in their families. Remember that as depressing as it is, it as part of the fabric of family and society. Remember persons deserve at least one pity party in their lifetime, but not too many or get help from someone who is equipped to help. Imagery also helps. What is that? It means trying to deliberately bring into the awareness, a pleasant scene or something that brings pleasure into focus.
“Let it go” is a common term that is used in trying to give advice. I have always wondered what it means. Suppressing the emotion can be detrimental. It has to be owned, while at the same time being able to focus on the opposite emotion by bringing joy into the present. This takes time and effort but in the end it helps. It is very beneficial to admit to the emotions whether they are negative or positive and to try to engage and focus in one of the above or the many other ways to manage in such situations. In so doing the emotions of pain will be diffused, hence, the ability to move on. One thing to remember is that healing does not happen immediately so patience has to be exercised and practiced. Most important is to find a way to use this for the benefit of others and the self.
Sometimes religious and cultural beliefs dictate that anger is a negative, sinful emotion thus it should be shunned. Another common belief is that forgiveness means no painful feelings of hurt should linger or else forgiveness is incomplete or null and void. Emotions which cause psychological scars take time to heal, many times, longer than physical scars. It does not disappear because forgiveness has occurred and it really has. Professional help should be sought if psychological healing is unduly prolonged as this could be harmful in the long run
Learn to laugh more. Isolation over long periods is dangerous. Social contacts are beneficial and can be good moral supports. Go to a movie or visit a friend. Read a book, take a walk and smile at the flowers and inhale the lovely fresh air. Family members are not commanded to meet all your needs. Do something to help others to be happy. Lastly, love “the you ”in you, with every good and bad part of the self, it is your history, and you are precious, every part. If there is no one to hug you, hug yourself, it is not sick to do so, or lick a candy if that is what you can afford. I learnt some time ago that no one except me is responsible for my own happiness. I vowed to celebrate every moment of my life as I do not plan to die before I am dead. It would be a pity to miss living while I am alive. I truly mean that and I live by that motto. I hope someone will benefit as a result of disclosing the other pain.
Prepared by Yunena Morales. November 7, 2005