Adventures in Anxiety: How do I build a care team to support my mental health?

We’ll get right to the post in a moment — but first, a programming note: This post is a little US-centric. Okay, a lot US-centric because of the way our healthcare system(s) is organized/not organized. I will try to keep this as general as possible, but it will be colored by my cultural experiences and biases.

It goes without saying that mental illness can be tiring. And when you first get a diagnosis, you have a lot going on. Now what? How do you proceed? One critical step is assembling your team of folks to help you get (more) well.

My dream? An inter-disciplinary/inter-specialist meeting with me and all of my medical professionals, sitting around a table together planning on how to get me well AF.

The reality? Me running between different doctors and tracking my own records and medications and making sure everyone has information they need to help me get better.

When I look back on the past almost-five years, I’ve learned a lot about navigating doctors and therapists in an attempt to piece together holistic care. Here are some tips I wish I had received when I was starting out:

What is your ideal end-state? Let me start by saying that this “ideal end state” continues to evolve as time goes on. And, at least when I was first diagnosed with GAD, I had lofty goals such as “Get out of bed before 11am” or “Drive to the airport without having a panic attack.” Anyway — get clear on how you want to feel (physically, mentally, emotionally, spiritually) to help you identify who to add to your care team.

Who do you need to get there? Now that you have those goals, which can you tackle on your own, and where can you find extra help? This is the part that was a bit overwhelming for me as I tried to disentangle symptoms and get some clarity. This is one reason that it’s helpful to build a lasting relationship with a primary-care physician — they can help you figure out how to round out this team.

Here’s who I included:

Primary care doctor: At this time I had seen my primary care doctor for about 8 years (she’s since moved on, so I have another doctor, and switching has been NOT FUN), so because of this history she knew a lot about me medically as well as temperamentally.

Psychiatrist: This was the most critical piece of the team, as he is is the person responsible for all of my medications (as a reminder, psychiatrists look at mental illness from a medical perspective and see the solution as medication — we’ll get to the behavioral/talk-it-out person in a moment). I’ve heard from some folks that finding a psychiatrist has been tough. I got lucky on the first try, thanks to a recommendation from my primary care doctor. My psychiatrist has literally been a lifesaver.

Therapist: Since I wasn’t exactly sure what a psychiatrist did (I had never seen one before!) I had wrongly assumed that he would help me talk through what was going on. He cleared that up about two minutes into our first appointment and suggested I find a therapist or psychologist to help me deal with the behaviors and emotions that I had. I had seen this therapist a few years prior, so we just re-started our relationship. Note: Make sure you see someone who is licensed by your state/province/country/governing body. In the US, you can check this with your state. Legit therapists should have a Masters’ or PhD in counseling, therapy, psychology, social work, or something similar, and should not hesitate to share their credentials with you when asked.

Other specialists: The gut is the second brain, so I also found a gastroenterologist to visit from time to time. I found a sleep center that I didn’t end up using (thanks, Sleepio!).

Lifestyle specialists: I’m very thankful for both of the personal trainers that I’ve used since I started this anxiety journey, as they’ve helped me stay happy and healthy, using exercise as stress-management. The other team member some folks have recommended is a dietician, something I haven’t yet pursued.

What does each of these people do, and what is the overlap? This part is super-hard. These folks have their specialities and work contentedly in their silos even though we know that the mind and body are interconnected. Instead of waiting for them to prompt me, I would try to ask two questions of them:

- What should my [other team member] know, from your perspective?

- What information do you want to know from [other team members]?

For example, some of the medications I took had an impact on my digestive system, so it was important to get clear on those side effects and how to mitigate them. Another example would be monitoring all my medications (those for anxiety and those for other things) to check their interactions and what tests we need to run to make sure all of my numbers are good (say, two medicines tax the kidneys, so we have to make sure we’re not over-taxing them).

As much as I wished that all of these folks did the integration, that’s not been my experience. It’s meant that I had to become my own advocate and shine a light on the overlaps that I saw (or that they identified after I asked them).

How can I be a “good” patient? A few months into this process I realized that it might be useful to think about how to be the best possible patient. That included:

  • Tracking symptoms/challenges: This helped me change or tweak my treatment based on what I was experiencing. I had answers when they asked me how treatment X was going, enabling them to do a better job on my behalf. I carried a tiny notebook with me everywhere so I could record in real-time.
  • Confirming that records were appropriately shared: Ugh, what a nightmare. Medical records in this country are a royal pain in the behind. I have spent many an hour making sure that each person has the info they need, but it has been worth it because I am helping my providers integrate what others know.
  • Practice good appointment ordering: Figure out what your appointment cadences are, and book early (and often) to make sure you stay on top of things. First of all, why struggle when you can get help? Secondly, figuring out the right cadence (who to see before someone else) means fewer appointments and more productive ones (in the long-run).

How can I be sure it’s working? You’ve got your goals — how are you doing? Reassess from time to time. Be open about seeking second (or third) opinions. At first I was not thrilled with my gastroenterologist, so I found another one and it was eye-opening to see the differences in perspectives. This is your life and your health — if something feels off, trust your intuition and get another look.

And finally, a note about privilege: I am lucky to work at The Company. Is my medical insurance perfect? No. But it’s pretty damn fantastic. I can’t imagine how much more difficult this would be a) without insurance or b) with other not-as-good insurance. I also appreciate that I live in a city that has enough doctors/specialists to meet the needs of the population — I don’t have to wait too long for appointments, nor do I have to drive to receive care. Finally, economic privilege means I can buy the best possible treatment. From my work with former prisoners, I know firsthand that being mentally-ill and well-off is a very different experience than if you are mentally-ill and poor.

xo, Sarah

P.S. It’s travel season! Next week’s Adventures in Anxiety will kick off a multi-part series about how to handle family dynamics and travel logistics as we head into the holidays.