Who Has Your Back? How I Learned to Navigate Complex Medical Appointments

By: Ronna Boles

Do you find going to multiple doctors’ offices and providers daunting? 

I do. I’m easily distracted by the sights, smells, and sounds of the doctor’s offices and find my mind swirling. It is overwhelming to mentally process the multifaceted disease that is scleroderma. 

As a mom of two, wife, and small business owner, I found myself opposed to adding the title of “patient” to my resume. Just when I thought my plate was full, there came a diagnosis that took over my ability to think clearly and act without fear. I quickly became aware I needed to find a way to manage all my questions because one provider might defer to another, or I may have a new symptom I need to make sure to remember to bring up with that specialist. 

Let’s talk about how we can manage all this information to best inform our team of doctors to achieve the best possible outcomes as patients.

Bring a Support Person

My biggest help has been to bring a buddy. This may be a family member, trusted friend, or supportive spouse. My support person is my husband. He is an extra set of eyes and ears for me; this way I can get the most out of appointments despite the short time allotment. Also many symptoms are experienced outside of the doctor’s office. 

Before diagnosis, I went to all my appointments alone, but after diagnosis, I found my mind was not able to comprehend all the information I was given due to how overwhelming the experience was. Is this my new normal? I often told my husband I was unable to think or conceptualize the future because every moment felt very “full on.”

Having him there has been invaluable, especially when I have been told I need to pursue more testing, add or take away a medication, or seek a referral to another doctor. I have also been grateful for his presence when I have received bad news. The perspective of another person who knows how tough you are, but can also sit in the discomfort, is important. If someone can’t physically attend an appointment, many doctors are supportive of having someone join by phone so you can still have the support you need.

Keep a Running List of Questions

I have found keeping a running list of questions in my notes on my phone is helpful. It’s labeled “Scleroderma Q’s” and I often add my questions before appointments. When I am asked if I have more questions, I will pull out my phone to make sure I have covered everything. I will often add the provider's answers there as well. This may include actions they want me to take, medication changes, or suggestions for further monitoring. 

Having questions written down helps ensure I don’t forget important information in the moment.

Use Your Health Portal

It has also been helpful to access my health portal app and read my doctor’s notes from our appointment. This helps me make sure we are on the same page with the information I shared and what was discussed during the visit. I have found referral notes there, helping me know when to expect a phone call or when I need to schedule the next appointment myself. 

Find Community and Connection

Lastly, my support group has become a monthly highlight. On top of sharing similar diagnoses, we share experiences, encouragement, and suggestions for navigating scleroderma. There is something comforting about connecting with people who truly understand what living with scleroderma feels like.

The shared wisdom and support from others navigating similar circumstances has been incredibly valuable.

Facing Scleroderma is a daunting life to lead, but I believe you will be pleasantly surprised when you turn around and see who has your back. I would encourage you to be vulnerable to the possibilities and see where they lead. 

BIO:

Ronna lives in Estes Park, Colorado with her husband and two children. When she's not running her small business, longarm quilting for others, you can find Ronna with a book or outside enjoying what nature offers in the Rocky Mountains. 

IG handle: @scleroderma.life