Last year my sister in law had surgery for cancer. The surgeons cut her from her chin to her arm pit. This was her second surgery. My sister struggles with the after math of breast cancer. There are so many kinds of personal courage. Watching her in a Japanese Bath House allowing herself to be seen naked with a body that people struggle to not stare at - because it frightens them. That they too could become a person that struggles with cancer. There are so many ways that people get to really touch their own well of personal courage. The ways that we get to touch that brave part of ourselves is quite endless.
Infertility is a disease that affects people from all races, professions and economic levels. We struggle to do what others think “comes naturally.” We desire to be a part of a community which often centers on family and children. We too, would like told hold our infant among adoring relatives, push our strollers down the avenue, and see simple wonders of the world through the eyes of our child. We want what most people in America and indeed, around the world value the most in their lives…a family.
Often, we feel set apart of the daily rituals of our community. Something as commonplace as a family gathering, a baby’s Bris or Christening or even how we choose to spend a Saturday afternoon, can be yet another line of division between ourselves and our fertile friends and family. I would like to take a minute, acknowledge those of you who are reading this, and have been affected by infertility - for your personal courage..
But it is only in my life time, that infertility has come out of the closet. For the television shows and print media, one would think that infertility is a very public issue these days. But today, the media, if not us, have come out of the closet. We only have to turn on the television or open a magazine to see the personal dramas of infertility played out through the eyes of a script writer, reporter or producer. It might be encouraging for you to know, despite the coverage, that on average, the infertile as a group spend less than three years in treatment and most of us leave treatment with biological connected children.
Much has been said about the patient perspective of the perfect infertility physician. In doing my reading on the topic, I read a wonderful joke that has been used to describe the doctor/patient relationship. Angels in heaven were all lined up in the cafeteria waiting to be served dinner. Suddenly, a conspicuous angel appeared wearing a white lab coat and a stethoscope, who started pushing his way to the front of the line. A new angel turned to an older one and asked, “Why in heaven would an angel act like that?” The senior angel shrugged his shoulders and responded, “Oh, that’s just G-d. Sometimes He likes to play doctor!”
What this joke plays to is the public perception of the physician as G-d. But we often do not discuss the qualities of the perfect patient, except of course the advantages of youth and having infertility as part of your health care package! Using this example of the heavens, an image can also be made of the patient as an angel, who allows herself to be pushed aside and quietly suffers. Interestingly, the word patient comes from the Latin word, “pati”, meaning “to suffer.” In fact, the adjective patient is defined as “bearing pains and trials calmly or without complaint.” The implication is that a patient must suffer silently like an angel.
I was never a silent angel. I was not a perfect patient either. But I gradually learned to be an effective patient. This transformation became about as I gradually figured out that I did not have to be a victim of infertility. I could be a survivor.
I think that the first step in surviving, is that we as patients in infertility have an especially difficult time dismissing the image of “The Doctor as G-d”. After all, especially in the treatment of infertility, the doctor can be seen as the giver of life. And let’s face it, we hang on every word. But to be an effective patient, we must learn to see the doctor that cares for us as a person with special skills instead of a G-d like figure. Only then, when we feel less intimidated, can we communicate more naturally with our doctor.
Effective patients approach infertility as a couple’s problem (when there is a partner!). Even when only one half of the couple has been identified as having the medical condition, it does not mean that both halves are not affected by the disease of infertility. The infertility work up, evaluation, and treatment is handled so much more effectively when both members of the couple participate in the office visits and have an understanding of the tests and procedures they have to go through. A couple who approaches infertility as a unit and shares the involvement in their treatment, is better able to support each other and make better decisions about their treatment and options. Remember when you try to divide an elephant in half, you have a mess, not two small elephants. In order for us to get through this we have to communicate and support each other with this elephant and not go off in different directions.
To be a survivor, we have to learn to ask questions about their treatment. Ask your physician direct questions about treatment shortcomings, alternative tests and therapies. For example, Is age a factor in this success rate? Will it hurt? How much will it hurt? What are the complications? What are the benefits of this treatment over others? It can be helpful to come prepared with your questions written down. To be an effective patient, you need to fully understand your tests and treatments in order to follow directions properly.
Survivors tell the doctor when he or she is failing them. This is probably the hardest thing for patients to do. I think we all have this fantasy, that if our “doctor really, really likes us” and we are “very good patients”, our doctor will try harder to get us pregnant. Communicating to a physician when we are unhappy about how we are being treated or the way our treatment is going can be very intimidating. It may one day happen, while you are in treatment, that you get upset about how certain procedures were handled or how you were handled while going through the procedure.
The emotional pain from such incidences can dig deeply when you are chronically in treatment and feel like so much depends on each cycle. These feelings can ultimately affect the doctor/patient relationship. But your doctor cannot be held responsible without first being made aware of how you feel and then being allowed the opportunity to respond. The doctor/patient relationship in infertility treatment is an intense one. And as in any relationship, both the positive and negative issues that occur need to be discussed and not avoided. Sometimes when we have been in treatment with a physician for an extended period of time without a pregnancy everybody gets frustrated, including the doctor! We can feel as if our doctor does not see us anymore. At times like these it can really help to schedule a sit down consultation when you can be sure your doctor has reviewed your treatment and you have her undivided attention.
Survivors understands that they have to be their own best advocate and seek education on both the medical and emotional aspects of infertility. The fact that you are reading this blog… tells me that you are a survivor. The professionals that take care of us, will probably tell you that infertility patients are probably most medically versed of all patients. However, we may overlook information about the feelings brought on by our infertility. A good way to begin is to check out the resources that I have listed in this blog and the links section. Check out our support groups or try reading about the emotional aspects of infertility. Infertility is one of the most stressful life crises you are likely to ever experience.
Infertility can shake the core of your being. But try to remember that while infertility is stressful, the feelings of stress are normal and expected, but not permanent. I promise you, you will not feel the way you feel today, forever. However, while we are in treatment and daily dealing with the pain of infertility, we need to find ways to cope and come out of this experience a whole person.
Educational and support groups do exist - and try to help. Many people find that doing yoga, meditation, and exercise can also be helpful. I know it’s hard, and I couldn’t always do it, but try not to give up your life while you are going through this. Try not to let the stress of infertility isolate you. If you can find an infertility buddy through your program, or the message boards, this can be a life saver. Who else will listen to how many follicles you produced and the condition of uterine lining for hours on end?
The patient who is a survivor who have learned to take an active role in the medical team, interpret success rates, is an educated consumer, gets emotional support in order to gain insight and encouragement for our personal choices, and sometimes, the effective patient has to know when it is time to stop being a patient.
Take one step towards leaving being a victim behind. Try being an active participant in the treatment process rather than a passive recipient of medical intervention. Make contingency plans with your doctor and spouse, what will we do if this treatment option or adoption plan does not work out. Remember, patients who are able to see the physician as a person, not a deity, don’t have to act like angels sitting silently in the wings.
It is has been said that the measure of success is how we handle the journey rather than its actual outcome. I know what you want. I wish for all of you the same thing you are wishing for yourselves - a healthy baby.
But try to not let the achievement of this goal be the only measure of your success. While you are riding the infertility roller coaster, try taking control of the moment and feel the success in just that. .
Through this experience, that you never wanted; through the tears and frustration, you and your partner will grow in ways that you can’t even imagine in this moment. For many of you, your love and strength for each other will tighten like a vine on a tree.
I believe in your strength and your courage. I have sat where you are sitting today. I have felt like the floor was opening beneath my feet, and my biggest accomplishment for the moment was that I was breathing. You will come through this. And you will write your own individual “happily ever after”. I hold out my hand to you and wish you a short journey.
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