Choosing a doctor in your journey with a Chronic Illness can be both exhilarating and frustrating.
Finding a team who wants your health to bloom just as much as you want it to, is the dream. However, it the first doctor you meet with, will more than likely not be the one you stick with. Therefore, it is important to know that it may take a lot of time and effort to find the medical team that does meet your standards. And that’s okay if it does…it will be worth it and you will thank yourself later, I promise.
Telling someone who lives with Fatigue and Chronic Pain that this process can potential take insurmountable time and energy that they don’t have, is not the dream. But, it’s something they should be aware of. And I’m here to tell you how I was able to do it.
How I chose Doctor #1…
Appointment Day
I didn’t give much thought when I was picking from the never ending list of neurologists in the Dallas Fort Worth metroplex. Filtering first by those who took my insurance, then by distance from my home, I selected a doctor in Euless and scheduled my first appointment.
My mom went with me to my initial appointment. We made our usual pre-appointment Starbucks run like we do for any day together, before getting on the road. I remember I-35 was full of construction and backed with traffic. The road was bumpy with many caution cones and road barricades.
Although I didn’t know it yet, the drive to my appointment was the beginning of my termination with Doctor #1.
The drive to the location was rather annoying but the parking was even worse. It overflowed with vehicles and took forever to find an open spot. Once we snagged a spot, we walked through the huge parking lot in the December cold to get to the front of the building. My cappuccino could have gone cold from the walk alone. Already stressful.
Walking into the building was no better. The big, sliding glass doors opened to reveal a brown, muddy carpet from what I imagined was from the late 90s. The smell was that gross, old doctor’s office smell. You know the one I’m talking about? It’s always the same lol. Then we found Doctor #1’s room number on the building’s directory and headed up the dark elevator.
The waiting room had a mix of different colored and textured chairs, arranged in a way that placed you either in view of another patient, or had another patient facing you. Large, awkward waiting rooms always make me feel like an ant.
We went to the front window and were directed to fill out the 26749+ papers on the infamous wooden clipboard. At the time, I had feeling in my hands but by the end of the first page they were cramped from writing, so my mom took over filling out all my personal information.
Once we were called back into the room, I sat on the patient bed and had my vitals checked. The nurse was really friendly, which was a relief.
The Diagnosis
My doctor was very professional and knowledgeable, I give him that. Once we entered into the small exam room at the end of the long narrow hallway, he pulled up my MRI scans. Yeah, this is definitely “Multiple Sclerosis” he said, and started to explain the disease to me and my mother.
Everything was pretty much in one ear, out the other. His words started to blur and I zoned out after he began talking about “lesions” and “gray matter”. I zoned back in when my mom, looking at me with tears in her eyes, asked when I wanted to begin the medicine.
Confused, I looked up at the doctor who was urging me to move forward with Tysabri (a form of medicine to treat Multiple Sclerosis), as he proceeded to list the side effects or areas of worry.
I didn’t want any medicine. I didn’t think my diagnosis was that bad. I really didn’t even know what MS was or why my mom was crying. To me, everyone was overreacting and needed to chill.
What I knew at the time, was that I wouldn’t be making any decisions on a medicine. Especially when the words “similar to chemotherapy on your body” and “incurable” flowed so naturally out of the doctor’s mouth. I barely even knew my disease and you want me to pick a medicine to treat this illness for the rest of my life? I thought.
In the (what felt like) 5 minutes we were at the appointment, I knew my decision was that I would not move forward with any medicine, especially Tysabri. It scared me. It was all still new to me and I hadn’t had the time to process. He expressed his professional opinion that he strongly disagreed with my decision. I felt like he was pressuring me in moving forward on something I was scared of and that didn’t make me feel good.
Most of my experience with Doctor #1 felt “off”. From the days that followed my initial appointment it was almost impossible to get in touch with the doctor or nurses with questions I had. We played phone tag more than we talked on the phone.
It took months to get another appointment and as I continued on without the medicine he was suggesting, he grew annoyed with my reluctance to it. So much so, that he didn’t want to continue the prescription refills I was receiving to “pause” my condition (this was pretty much a steroid that would last me symptom free for 2 weeks at a time). We didn’t agree on a lot of things, which was fine. But the more I resisted, the more he fell away.
How I chose the right Doctor…
It felt like I was a number and not a name with Doctor #1. Most of my life, I sought out employment, professors, relationships, and organizations that made me feel special and not like a ‘dime in a dozen’. I wanted the same for my doctor and medical team. I wanted to feel like I was their only patient with MS, even if I knew I wasn’t.
As selfish as that sounds, it was true. To feel like it, was what mattered to me…that was the kind of attention I yearned for in this time. To feel like they recognized my face, remembered the stories about my family, or even knew my dog’s name. This was what I wanted. And Doctor #1, wasn’t it.
For me to start feeling ‘good’ about the decisions I’ve made or will continue to make in my journey with an Autoimmune Disease, I needed to get real with myself and cut the bullshit. I didn’t like my doctor. And this wasn’t working for me. So began my mission to find my forever doctor.
I quit Doctor #1. I actually stopped calling and scheduling appointments and they never followed up. That was when I knew I made the right decision to quit my doctor.
With lots of research, I found Doctor #2. I’ve been with Doctor #2 for 5 years now and I love him and his team of nurses. That being said, it should be known that not everyone can find their forever doctor this quickly. If it takes you more than 2, or 3 or 4, or more than 5…it is okay. Your journey is special to you and you deserve a doctor who you feel a connection with.
Pay Attention to These When Choosing Your Doctor
Energy & How You Feel
You know your body better than anyone. Paying attention to the energy you feel around someone or some place is really important in your healthy journey. As for me, my gut instincts are my strongest, most reliable form of decision making. If I’m not totally in, I’ll know it.
One thing I learned by being on the real estate development team for the Macarthur medical office building in Texas was something the architects said. I wish I had heard it before making my decision with Doctor #1, but it has stuck with me ever since. They said:
Someone’s medical appointment starts from the moment the patient sets eyes on the property. And for some, even before that. Going to the doctor can be very emotional because in most cases, patients are seeing a doctor for less-than positive reasons. Designing and creating a space for the patient to feel safe, calm, and supported is incredibly important for them to feel like they have had a good experience.
How true is that?! I loved that their job as architects went past the point of designing a space, but one that met the patient (and doctors/staff) where they were at in their day. They thought about the experience and how to adhere to their thoughts and emotions. That was what I wanted in my journey. A medical team who could do the same for me on that level.
Doctor #2 was located in the back portion of a community of medical buildings. With a convenient parking lot and lots of trees, you can easily access the front door. As soon as you open the door you are greated with high ceilings, floor length windows, updated flooring with the tile that looks like wood, and a consistent furniture theme throughout with small waiting room. The room smelt clean and new and the songs from an up to date playlist played over the speakers.
So far so good.
Communication
Being able to reach and communicate with your doctor is important, but how your doctor and the team communicate with each other is also something to take note of.
Getting in touch with Doctor #2 was no problem. They have multiple admins who answered calls and directed any questions to 1) the nurse who treats you and 2) the neurologist.
If I called the admins for more information, they had a swift chain of communication with both the nurses and neurologist. Unless it was a serious issue or we were discussing annual results, my immediate point of contact was my nurse, who always got back to me within 48 hours or as soon as possible.
The team’s communication was very reliable and everyone seemed to be aware of what we had last discussed or where we were at in our communication.
The Entire Medical Team & Their Practice
Doctor #2 had a team of nurses who you were matched with. My nurse (who’s name I won’t share) is an angel and I know all about her son and some about her ex husband. She knows about my dog Luna and my husband Collin. She knows I only take an IV on my left arm and she never has to prick me more than once, thank god…I’m terrified of needles.
Doctor #2 actually knows Doctor #1 from their time at University together. When I met with Doctor #2 he asked me where I’m at mentally and emotionally before speaking about my physical health. We discussed goals with reality, and he explained why I should take medicine.
The reason I agreed with Doctor #2 was simply in his calming but real nature. He understood this was all new. He shared with me that he has many patients of all ages, shapes, colors, religions, etc. He understood it was big issues for me. And he reassured me that in his care, he would do whatever it takes to make me feel comfortable.
*Gut feeling* – this is it. This is your doctor.
He told me in taking the medicine, it would be done here, in his building, with his team and him readily overseeing the treatment. It was a relief to know that I wouldn’t need to schedule with a separate infusion center. Instead, with Doctor #2, I could see the same nurse for each of my treatments and feel comfortable with a familiar face through the hours long process.
Now, when I go for my medical infusions (which I’ll share in another blog post), my nurse offers me the treats they’ve receive from nearby vendors that day…which are always the best cupcakes and sweets.
The Technology
Doctor #2 uses MyChart for medical records and has created a Client Portal through their website. You can choose to receive emails or text reminders to confirm your appointment and review documents beforehand so that the day of your appointment, everything has been taken care of.
If you chose to review documents during checkin instead, you are given an iPad (eliminating the need for the infamous wooden clipboard and medical papers) to review and/or update any documents electronically.
The entire process is easy and up to date, which allows me to feel secure in my health journey.
Your Overall Experience
Overall, I love Doctor #2. He and his team answer all my questions and make me feel special when I come to their building. Their team is kind, patient, and so put together, that I feel like I’ve checked into a luxury medical center in Beverly Hills lol.
In fact, when I told my doctor I would be starting this blog, My Soul Purpose, he was ecstatic and told me I could reach out to him for any questions or information if I needed.
So yes, it is okay to ‘fire’ your doctor. If it’s not right, don’t force it! And yes, it is possible to find a doctor that can meet your needs. And yes, it is worth taking the time to research and review your options. I lucked out with only having to try one other doctor, but when you know, you know.
Read more about life with Chronic Illness on the page, My MS Journey Series.
