How To Build A Healthy Relationship With Your Doctor
A good relationship with your doctor is essential when living with cystic fibrosis. CF patients often report feeling dismissed when talking to their doctors. On a recent social media Q&A not feeling like a person but rather another number on a patient list was raised frequently by many in the CF community.
It is reported that effective communication skills alongside real empathy will overall improve a patient’s satisfaction and improve compliance with treatment.1
Globally, these loopholes in the communication system surrounding healthy doctor/patient relationships were being voiced by many. It was time for a change. It is fundamental we build nourishing, wholesome relationships with our doctors now more than ever.
What change looked like
Cystic fibrosis demands a high treatment burden.2 That alone makes empathy a priority. At 17, being told to do numerous nebs a day because otherwise “I was going to become very unwell and not recover” did not help. I had no intention of acknowledging my condition, let alone actually nurturing it.
Many CF teams started to add additional members – psychologists. These mental health angels were much needed within the historic preset of what a CF team should encompass. Not just to give space to patients but to educate the doctors.
Years later hearing my doctor say:
“I know this is hard. We are here to try and help. What can we do? What helps YOU?”
Now, that made the difference. True empathy was the first step to a wholesome, trusted connection with my doctor.
Overcoming communication blocks
Be honest and be heard. Here are some tips on how to overcome some of the most common communication blocks when talking to your CF doctors:
Some doctors can be "textbook." If they have not read it or seen it, they do not acknowledge it. Give examples. This is where you can utilize other people’s personal experiences with the same condition or symptom. If you feel you are being dismissed because they are rushing, request more time.
New symptoms or drug reactions
If you feel unheard, especially if this is surrounding a new symptom or perhaps a reaction to treatment - gather as much evidence as possible. Keep a symptom diary to show this is not just all in your head because you have been documenting it, too. It gives them something extra to review. Again, other patient experiences can be a useful tool.
If you feel anxious when talking to your CF doctor or struggle to remember things you need to speak about because you feel too nervous – make a list of questions to help prompt you. Alternatively, you could send an e-mail rather than doing it face to face during a clinic appointment.
Taking somebody along to support you can make a huge difference to anxiety levels around clinic or hospital admission day. Always take in something that feels like "home" or a "treat" during a hospital stay to comfort you on those particularly difficult times.
Needle phobia or procedure stress
Something that is prevalent in CF is the presence of needle phobia, procedure anxiety, and complex CF-related PTSD, and stress. These fears feel very real and are not usually based on “things hurting” but rather on the traumatic memories still imprinted deep in our psyche.
CF teams today are reasonably good at acknowledging all the associated anxieties that come with the constant prodding and poking. Do not be afraid to speak up and ask for help. That could mean speaking with a psychologist, having freeze spray or numbing cream before a needle, or asking for some sedation leading up to a procedure.
I find if I have somebody new accessing a line, it helps to explain my needle phobia to them and tell them exactly what I need them to do to help me feel “okay”.
Confusion or being kept in the dark
Ask questions. No question is a silly question - this is your health after all. If you want a "rip the band off" approach rather than things being sugar-coated, tell them. In my experience, a doctor won’t commit to giving you indefinite bad or good news because they are not God and the will of the ways can always change but they will usually be as honest as they can be with you if asked.
I think many of us have high expectations of our care providers and rightly so. Mistakes should not happen, but they do. No doctor is perfect, they are only human after all. When errors are made by your doctor, it can feel like your world has come crashing down and you do not know who you can trust anymore.
I think the key here is to firstly raise the concerns as soon as they arise - don't wait it out. This can be done verbally or by letter. If don't feel comfortable, ask somebody you trust to step in and do it for you. Then ensure they are adequately resolved. Then comes the hard bit, re-building the trust you had with your doctor. Depending on the severity of the mistake, this can take some time or you may wish to relocate to a different hospital and start afresh.
What tips do you have for talking with your CF doctor(s)? Share your thoughts in the comments below!
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