My doctor is one of my primary foundations in life. She is the only GI doctor I have ever had and she has kept me alive during the hardest times of my life. She has stood by me even in hate filled years when I blamed her and others for my health issues. She is one of my biggest advocates and always looks out for my best interest with an intense empathy and understanding of my physical and mental needs. She has maintained me as a patient for these very needs for 20 years, well past the age of a pediatric patient-doctor relationship. In her 84th year, she's begun to further prepare me for transitioning to adult care. This has been no easy feat due to my trust issues of medical providers. I understand her reasons - she's gradually preparing to retire, she has her own health to consider, and wants to ensure I'm medically taken care of and not thrown to the wolves. She has assured me she will continue to follow me and wants reports from my new adult GI doctor and will remain available to me. I was doing well with this forced separation that is beginning. So I thought.
I made another call this week to a group of GI doctors for a new patient consult. I'm lining appointments up with doctors to interview to find the right fit. As I was speaking to intake and was asked what I'd like the scheduler and doctors to know prior to my appointment as well as what kind of doctor I'd like the anxiety and fear began to flood over me, my voice became shaky, and my eyes wanted to tear. I want a doctor like my doctor. A knowledgeable, empathetic, trustworthy doctor who understands my limits and won't push me over the edge. A doctor who doesn't brush me off and tell me I'm "just whiny" like the doctors and hospital staff did when I was a child. I want to be believed and trusted about my physical and mental needs and limits. I don't want to be sent to multiple doctors.
I want my doctor.
Like with any transformative experience, chronic illness changes and shapes us. One way this occurs is our outlooks on life. Some are very cautious while others become risk takers. I believe though in both types, none of us like change. Even a risk taker wants to continue the ability to take risks in spite of the consequences, there isn't an expectation for change.
I am the more cautious type. Change has never been easy for me regardless what the change was. I like my routines, I like to know what to expect. Change is scary for me. Bad things can happen when there is change.
"THE SECRET OF CHANGE IS TO FOCUS ALL OF YOUR ENERGY, NOT ON FIGHTING THE OLD, BUT BUILDING THE NEW." - SocratesMy life was smooth until my first surgery when everything changed from what I had known. My body changed repeatedly within 1 year and so did the expectations as each surgery changed the plan. Originally, I was to have a temporary ileostomy ending with a jpouch. Due to complications from my intestine wrapping around itself and other organs, delayed response by the surgeon and emergency room staff, a portion of my small intestine died including the formed jpouch that awaited my ileostomy to be taken down. Next a straight pull thru was attempted but too much had been removed and a straight pull thru was deemed impossible. Finally, I was left with a "permanent" ileostomy until 6 years later when a straight pull thru was attempted and achieved by a different surgeon. In high school with my second round of surgeries, I once again didn't know what to expect as my health became a roller coaster of instability. That roller coaster gradually leveled out to rolling hills compared to the peaks and valleys previously experienced.
When you're on a never ending roller coaster of instability you remain at a high level of readiness and alertness, maintaining a level of preparedness for the next worse thing to happen. It's exhausting to remain on alert with your adrenaline pulsing at high speed. Such a high level adrenaline for an extended period leaves you longing for the mundane with your health. I lived like this for years: never knowing if I'd live to the next day, when the next hospitalization would be, if I'd be able to complete all of my school work and pass that semester, make it through a work day. Since the roller coaster has slowed I've become accustomed to the predictability of more stable health. I know what my day is likely to consist of and there is predictability even with my flare ups. I know what I can do to reduce flare up triggers, what most helps ease the flare up, and when the flare up will likely end. I can prepare myself and make it to the other side.
There's a comforting sense of security in predictability and routines. For me, it's like a security blanket wrapped tightly 'round, hugging and holding me in the arms of safety. This need for security expands beyond my health to my home and family life, friends, and work. The stress of drama and the unknown are too demanding on my psyche and can lead to negative health effects. Being a Type A Personality, I require goal setting with extensive step by step planning for how I'm going to move from point A to point Z in life. Without this extensive plan, I feel lost in the world. As long as I can readjust my plan I can find my footing once again but if I have a difficult time establishing that new plan, it's a major upset to my mind. Not knowing what to expect is also distressing even in the most insignificant situations. This seems to be common among Highly Sensitive Persons. The unknown is overwhelming and uncomfortable for me. Once I become familiar with the individual, setting, or situation I am able to relax more and find my way. But it's that initial plunge that is highly stressful. And so I don't like those changes either. I become comfortable within my work and social groups, enjoying the warmth and security of the familiar. Changing such environments require me to let myself let go of comfort and plunge into the unfamiliar. This is not always an easy feat.
"IT TAKES A LOT OF COURAGE TO RELEASE THE FAMILIAR AND SEEMINGLY SECURE, TO EMBRACE THE NEW. BUT THERE IS NO REAL SECURITY IN WHAT IS NO LONGER MEANINGFUL. THERE IS MORE SECURITY IN THE ADVENTUROUS AND EXCITING, FOR IN MOVEMENT THERE IS LIFE, AND IN CHANGE THERE IS POWER." - Alan Cohen
And yet, regardless of the reasons for resistance and dislike for change it is a requirement of life and we must find ways to adjust to the changes we face. We all tackle change differently and through trial and error will find what works best for us. I've found these techniques to be particularly helpful during a change process. Depending on the size and challenge of the change, these techniques may require prolonged use or may be accomplished in a seemingly quick fashion.
- Changing the thought, feeling, behavior cycle. There is a connection between our thoughts, feelings, and behavior. We change one and we change them all. It can be a vicious cycle of negativity or it can be a healthy cycle of positivity.
- Thought: I'll never find another doctor I'll trust or like
- Feeling: Hopeless and Scared
- Behavior: Discontinue medical services, guarded or defiant attitude with new doctors, depression, delayed action to find a new doctor, etc.
Change the cycle to:
- New Thought: I'll find a doctor I like and trust, it just may take some time to find the right fit
- New Feeling: Hopeful and Determined
- New Behavior: Continued pursuit of a doctor for the right fit, openness with new doctors
- Reframing. We have negative thoughts all the time even without realizing we're having them. They're often those fast, immediate thoughts we have that fleet in and out of our minds. These thoughts feed into the thought, feeling, behavior cycle. We can help stop the cycle with recognizing and altering our negative thoughts. This reframing also helps us remember what is possible, our strengths, and gives hope. I like to make "coping cards" and list positive thought reminders, coping techniques, and helpful tips as a visual and tangible reminder.
- This doctor won't be anything like my doctor ---> I'm going to give this doctor a chance and if I don't feel comfortable I can try another doctor.
- I hate finding a new doctor ---> It can be difficult to find the right fit but I will, there are a lot of good doctors around
- I can't do this ---> I'm stronger than my fears and anxieties. This is just one more challenge and I will conquer it
- Goal Setting. Any change in behavior typically requires some goal setting, even if we do this automatically without thought. It's easier to tackle change by breaking it down into manageable, realistic steps. This keeps our motivation going and reduced the feeling of being overwhelmed.
- Relax. Keep your frustration to a minimum to prevent burn out during the change process. Maintaining motivation will keep us moving forward to the other side. Relaxation helps keep the frustration reduced and motivation high. Find what works best for you: hobbies, relaxation techniques, socialization, etc.
- Re-evaluate. When you feel like you're hitting a wall or spinning your wheels, take a moment to breathe and re-evaluate the situation. What is working and what isn't working? Do your goals need to be changed, do you need to readjust your attitude and mindset, is there a better way to tackle this change?
- Support. A support partner during a difficult period of change can make a huge difference in your moral and navigation through the change. Talk about your fears and your challenges rather than bottling them up. Seek your support partner's opinion, set goals with your partner and let your partner hold you accountable to your goals.
- Allow Change to be an Opportunity. Good things can come from change even if it's scary at first. Without change we can't grow as individuals. New jobs challenge our skill sets, broaden our horizons, may alter our economic development. Meeting new people exposes us to new ideas, information, and cultures, allowing us to learn from others and grow our networks. Moving residences lets us experience another area with its own unique community. Challenges and changes add to our strengths and our accomplishments as we progress through the process.
I can relate to your fears in finding a new GI, I think so many with FAP can. It's frightening to put your life in someone else's hands who you don't know, and who doesn't know you.ReplyDelete
These are excellent tips on how to deal with the anxiety and fear of anything FAP throws our way.
You are stronger than you realize and very resilient. You bring delight and joy to my life. TReplyDelete
I couldn't do any of it without you and mom. Love youDelete