Dating & Doctors

I promise I am not going for click bate or deliberately trying to be provocative with the title, but I strongly believe finding the right doctor is akin to dating.

It’s been a decade since I went on a date, but I remember the hopes and disappointments of dating life — very high highs and very low lows. As I traversed the precipitous path of chronic illness, I quickly realized the same hope and disappointment applies to finding the right medical team. Doctors are not one-size-fits-all. They are human beings with different characteristics and talents that will attract and keep different patients. They have the power to make you feel unbelievably loved and cared for or disappointed and dejected.

Play the field

Similar to the book (or movie) He’s Just Not That Into You, I realized I just wasn’t into a lot of the doctors I saw for MS and it took me a while to realize that was ok. Let me write that again to ensure I adequately convey the gravity of the statement: it’s ok to not like your first doctor and to play the field, there are more fish in the medical sea. The mistake is thinking the doctor you’re given when newly diagnosed or the person who was first available, is supposed to be your forever or that you as the patient can’t make a change if your needs aren’t met. If you’re the one in a million who found true love on the first round, more power to you!

I’ve seen five MS specialists (plus one amazing fellow) at five separate hospitals in two states. I’ve had countless fellows, residents and nurses as part of my care team as well. None of the doctors I saw were bad people or bad doctors. Without hesitation I would recommend each of them as superb professionals; they just weren’t right for me. It took time, energy, good insurance with low copays and tough conversations to come to that conclusion.

Do your research

At Cleveland Clinic, the doctors work with the marketing team on physician bio videos that you can watch on the website. I search and watch the video for every doctor I see. I love learning what brought them into medicine, if they are articulate, what they are willing to share about their hobbies and families and why they chose their specialty. It provides a springboard for connection. I also google stalk any potential match to see what they share on social media, where they’ve published, are they involved with advocacy organizations and if they are used as a media spokesperson. (I never even google stalked my real dates, sorry doctors!)

It’s imperative as a patient to hone what you are looking for. For me I never cared if my medical professionals were men or women, where they went to school or how many years they had been in practice. Their professional pedigree was almost superfluous. I cared about how they spoke to me and how they made me feel.

I appreciate when they are punctual but understand if the reason they are late to my appointment is because they ran long with another patient. I know that could be me next time. I never like to feel rushed or made to feel as if I’m keeping them from where they really want to be. This is a big one in my opinion. In normal (non HSCT years) I see my neurologist once maybe twice a year so every minute I have with them counts. They don’t get to rush me, this is my time.

Preparation is key

I always prepare for medical appointments with an agenda. I’ve said it before but organization and planning give me peace so I play to my strengths. I use the NOTES app in my phone year-round to track questions, feelings, links and symptoms. I of course want to review the clinical aspects (findings from my MRI and results of any blood tests) but also tell my story so they understand how the neuro exam and my disability score translate to real life. A worsening score on my reflexes is great but can I walk up the stairs? Do I have energy to make dinner? Can I stand upright and balance when I try to vacuum? Where am I at with my disability and how is it impacting my life? I don’t sugar coat where I’m at and I never downplay my experience.

Be brutally honest

I know it’s uncomfortable, awkward and embarrassing to discuss all the effects of MS on the body but you have to. Your medical team needs to know what’s going on. They don’t know what you don’t tell them. They aren’t mind readers and they can’t guess or infer nor should they have to. Use your words and tell them every twinge, bizarre feeling, unexplained reaction and side effect you experience. Let them make a clinical determination with all the information.

Memory is fallible and worse when emotions are high…aka when you are at your long awaited doctor’s appointment so be sure to write things down. Also, if you know it’s going to be a difficult appointment, bring someone with you. Another person hears things differently, can absorb information and take notes during the visit. In COVID times you might not be allowed to have someone in the room but we all have cell phones. FaceTime or go old school and call a friend or family member and have them on speaker. It is your choice (and your right!) to dictate who is a part of your medical journey. You don’t have to go it alone.

Ask all the questions

Like any good relationship, you should feel open to ask questions and be able to set expectations for what you need and want from the relationship. Same goes with your medical team. I ask how I can contact them — MyChart, email, direct phone line? How long will I have to wait for a response? Is there a difference between a symptom flare, a relapse or heading to the Emergency Department for when I should reach out? Are they communicating with other doctors in their practice or other specialists in my care team? Are there other resources available outside of my doctor that can help? Asking the last question is how I learned about MS-specific physical therapists, support groups and patient advocacy panels to improve care for MS patients at Cleveland Clinic.

Try an open relationship

Lastly, second opinions are a good thing. If you have a doctor who gets weird, territorial or antagonistic about you seeking a second opinion from another doctor – LEAVE THEM IMMEDIATELY. Medicine is a practice after all and they are practicing on you. Doctors need other doctors because there is too much damn information on any given health concern for one person to absorb. Health information changes at an exponential rate. You want a doctor who says “I don’t know” and asks for help and wants to talk about you with their peers. Medicine should be collaborative, that’s why you have a care team not a care individual.

If you feel stuck

I recognize my medical privilege. Since diagnosis, I’ve consistently worked for large organizations with excellent healthcare coverage. I am intentional in the companies I apply to work at for this very reason. If insurance or geography has you stuck with your current doctor ask them for recommendations for other specialists in their practice. If you do not feel comfortable or confident to ask for a change think about others in your medical team like your primary care physician, nurse practitioner, physical therapist or infusion nurse. The sky is the limit. Most medical professionals want to help.

I have dated around the medical world and it’s exhausting but oh so rewarding when you meet your match.

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