Researching My Illness: Learning to Let Go and Trust My Physician
As a research sociologist, my goal is to research anything and everything I need answers to. I often become so preoccupied with this search that it becomes an obsession.
Many people turn to online research for answers about health issues, and I am no different. When it comes to my health, I turn into a research beast. I will spend hours on the internet seeking answers to my rare illness.
Whenever I get anxious about my health, I find myself going into beast mode. I research until my eyes hurt and my fingers go numb.
It has become such a problem that my family has begun to worry. My doctors have already told me to stop causing myself anxiety, and as much as I don’t want to hear it, they are right. I am not a medical doctor, and they certainly know more about my disease than I do.
So why can’t I just let it go?
Sociological research involves studying society, culture, socialization, social structure, and so on. How can I possibly know anything about the medical world and its diagnostics?
I must learn to trust and leave medical research to the professionals who are scientifically knowledgeable.
So why can’t I just let it go?
Whenever I get lab work, a CT scan, or any other procedure done, I am anxious to know the results. Once I receive them, I go into research mode.
Why can’t I just let it go?
Am I hoping for a restoration of my life before illness? Am I hoping there is some truth to “a fountain of good health”?
I have often asked myself, “What are you afraid of? Why do you keep looking for answers? Why can’t you just trust your doctors?”
I have changed doctors many times in the past two years. My excuse is always the same: They don’t fit my personality. But I’ve realized it’s not that they don’t fit my personality, it’s that I’m afraid they will.
Once a doctor fits my personality, I will finally have to stop running from the truth. I’m realizing I still carry a little anger toward this disease. I haven’t yet come to terms with it, therefore, my disease and I are having a hard time becoming friends.
This is where my new pulmonologist comes to the rescue.
I have found a new doctor at the Houston Methodist Lung Center in Texas. Our first visit felt comfortable and easy. I told her my immediate and long-term concerns, and she answered honestly, without hesitation. We talked about my career and plans for the future. I told her when I first noticed my symptoms.
Then, I mentioned I have been doing my own research.
Her advice was, “There are medical journals out there that can help you to understand your rare illness, but as a sociologist, you should know that research takes time. With a rare illness, you may not easily or swiftly get the answers you want. This is where you let me take over your health, and your job is to help me by taking care of yourself.”
Myself. I’ve been so busy running away from the reality of my illness instead of accepting it. This illness can either be my enemy or a part of me I can nurture and care for. Hopefully, I’ll live longer than expected.
If you or someone you know is struggling with a rare illness, know that you’re not alone. Find the right doctor who will walk with you on this course. Trust that their priority is keeping you healthy. Trust that they will do everything possible to keep up with the latest research, tests, and medicines available.
Rare illnesses may not have answers or cures, but with the right treatment and care, we can prolong our lives.
For now, I will stick to taking care of myself physically and mentally. I will leave the medical research to the experts. It doesn’t mean I won’t peek at it now and then, but I will not allow my anxiety to take over.
I am in good hands.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.