9 Things I Wish All Medical Professionals Knew About Caring for Patients

I have a rare, genetic, potentially life-threatening and incurable disorder. And yet, despite this diagnosis, I am beyond blessed.

I am blessed because I have access to a comprehensive care medical team dedicated to helping me live well with this condition. They constantly exceed obligation or expectation every single day to help me live the best life possible.

They’re such amazing professionals and leaders, and I wish other professionals could learn from them about patient-centered care in the following nine areas:

1. Use worry/hope dialogue.

It would be easy to fill appointments with dismal news to process. However, my appointments rarely take this format. Instead, my team shares their worries and potential for challenges given the limitations of this disease. But that’s not the end of the appointment. It’s then followed up with a conversation of hope based on potential research, development of upcoming treatment options, my strengths as a human being and my coping abilities. This balance always leads me to feel far more empowered than worried for my future.

2. See me as a whole person.

With this team, I’m never my chart number. Or my disease. Or my medical history. I’m simply me — a unique person. And I feel that every time I’m at the clinic.

3. Ensure fear doesn’t rule my decision making.

This disease can be terrifying. Fear frequently has the potential to walk beside me. But I know my team is there to put that fear into perspective in a transparent manner. Each one of them helps me make decisions based on evidence, courage and hope rather than fear.

4. Help me partner with other medical professionals.

Trying to explain a disease that doesn’t always follow the normal conventions of medicine can be a trying task when engaging with other medical professionals. The attempt to integrate medical terms and treatment plans into my everyday life can be equally as trying. My clinic team is always there to help bridge that gap and teach me how to partner with other medical teams.

5. Never give up.

There are definitely times when I don’t want to hear about this disease again. But the clinic team never gives up. In every interaction I have with them, they are beyond dedicated to keep learning and sharing their wisdom with patients to provide hope exactly when it is most needed.

6. Check in with my caregiver/support system.

Every member of the team knows it takes a support system to live well with this disease. Not only do they acknowledge this, they genuinely take the time to explore what’s working well in this area and what else may be needed for support to ensure I’m not experiencing additional disease burden due to isolation.

7. Be willing to say “I don’t know.”

Sometimes “I don’t know” is the best answer. This doesn’t mean it will never be known; it just means the team is trying hard to come up with an answer instead of guessing. They always take the time to truly explore all possibilities to help me live well.

8. Allow tears.

I’m human and this disease doesn’t play fair. So tears of grief, sadness, frustration, anger, fear and even wallowing are all allowed in the clinic. Each one is met with empathy and compassion. However, tears of joy and triumph are equally accepted and encouraged.

9. Finally, and perhaps best of all, understand acceptance is a fluid process.

They understand chronic disease and rare illness models, and somehow they know how to integrate that into the ebb and flow of my life. Sometimes that acceptance comes easier in times of reprieve from the burden of this disease. Other times that acceptance comes after many challenges before hope begins to surface. Regardless, the clinic team employs a mixture of patiently waiting and gently pushing to help acceptance of this disease over and over again; a gift that helps me to keep going each and every day.

It is my hope that other teams can begin to learn from my team. The potential of patient-centered care and empowerment may depend on it!

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