One of my earlier columns emphasized the importance of incorporating a focus on mental health aspects of care by doctors treating patients with rare diseases or any particularly daunting medical condition. 

Having a disease like Duchenne muscular dystrophy (DMD) made just searching for a therapist I was comfortable speaking with another quandary. It was a Goldilocks type of journey. It took more than 3 attempts to get this just right.

Around 6 years ago, mental health was starting to become more of a subject at the forefront of my mind. Initially, I was only talking to a social worker provided by the clinic where I was treated. This was twice a year, which didn’t seem like enough for me. So my quest for more frequent outside counseling began.

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To this day, I use Psychology Today’s digital platforms to locate nearby mental health providers. I feel the variety and quantity of search results make it a very invaluable tool in this area of health care. I narrowed it down to someone in the general vicinity of where I live and who accepted my Medicaid insurance, and who was not affiliated with the hospital that provides my core care.

As is typical policy to receive services from a mental health specialist, I filled out an intake form so the therapist could know some of my background. Of course, I mentioned my diagnosis of DMD and how it has impacted me mentally. I was in the middle of our session and instantly knew this wouldn’t be a good fit. The therapist thought I had multiple sclerosis (MS) and suggested I find treatments for it. I didn’t go back.

The next provider I found was about the same distance away, and I was drawn to the fact that they had seen people with significant physical illnesses before. I saw them for several months, and I felt much more comfortable during the sessions. However, the appointments were in the evening and not exactly a short drive away, which didn’t sit well with my chronic fatigue.

Read more about DMD therapies.

Next, I located a therapist a little closer to my home and who was well-versed in discussing trauma—something I feel I’ve endured due to my medical challenges. When I arrived at the building for the first session there was a glaring problem. There was a step at the front entrance that my wheelchair couldn’t scale. Despite this, I returned on a few occasions with a portable ramp and made good progress at the appointments. Eventually, they added a ramp, and I continued to see the therapist. And when they moved on to open their own practice, I followed.

I continued to build a good rapport with this therapist over the next year. We discussed subjects I hadn’t with anyone before. The COVID-19 pandemic started during this timeframe, and we then switched to virtual therapy. This went on for a few months until I felt we reached a point where the list of issues I wanted to discuss had been exhausted.

As the pandemic seemed to mercilessly wear on I started to feel lonely and cut off from society due to being stuck at home for so long.

So, I restarted my search for a therapist to help me with these new issues. The search led me to where this all began. I decided to get counseling from the very same social worker I first discussed my mental health with at the hospital. They had a practice, and to me, the background they had with the DMD clinic gave them a unique understanding of my situation. As such, we are currently having virtual sessions about once a month.

After undergoing this long journey, there are a few things I’d recommend to mental health professionals who encounter a patient with a rare medical condition. 

At a minimum, please make sure your location is accessible. If this is fine make it a priority to have a video option for your clients. Though in-person therapy can certainly have its benefits, there are days where I’m just not in the best shape to leave the house. COVID has also made this commonplace for so many. If you’re unable to accept the patient’s insurance for whatever reason, consider offering a sliding scale for payment.

There are probably qualified professionals out there who want your services, especially if your specific background suits them. They might just need to sacrifice a little money to see you.

Mental health struggles will likely always be a part of my life with DMD. I’d like to avoid making the search for a therapist one of those stressors.