A patient’s experience addressing mental health and Pompe disease

In my last column, as part of “The Pompe Community Diaries” series, I introduced 37-year-old Michael Thames, a behavior analyst from South Carolina who has Pompe disease.

When he was younger, Thames was confident in his ability to be self-sufficient. But from the beginning of his training in the U.S. Air Force, when he started experiencing symptoms of Pompe disease, and through his eight-year diagnosis journey, Pompe eventually became the “I can’t fix this” disease in his mind.

In a recent video chat with Thames, we discussed the mental side of this disease. Excerpts, edited for clarity, follow:

AW: Describe the mental side of your Pompe journey.

MT: For me, [a Pompe disease diagnosis] was the first major “I can’t fix this” moment. I didn’t have the coping skills for being diagnosed. The future was so uncertain. Something was wrong with me, and it didn’t feel fixable. Quiet moments bummed me out. My day to day got harder.

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Tell me about your experience turning to therapy for help.

At first, I was embarrassed to seek therapy. But about four or five years into searching, I decided to give it a shot. I had a great therapist who helped me start talking. Initially, I didn’t have the right attitude and saw it as a chore.

My therapist was big on cognitive behavioral therapy, which aims to help people change their thoughts and behaviors. I learned that being diagnosed with Pompe disease was, in fact, a traumatic event. Therapy helped me talk to someone about trauma in a nonjudgmental way.

What did you find helpful in therapy?

Working with therapists wasn’t a cure. They were guides who challenged me to do my homework. Homework was very important for me. It made me realize how often I was engaging in negative thought patterns and what some triggers were.

Physical pain periods were and still are difficult. But I learned that I am in control of the thoughts around the pain and can choose whether to focus on them. Doctor appointments and daily activities are great examples of constant reminders of me living with it. Before therapy, I would think, “How much longer am I going to live? How much worse will the pain get?”

Therapy helped me accept negative thoughts but then process and move past them. Thought patterns went from spiraling into an absolutely negative abyss to “Yes, that’s the condition I have. That does suck. I’ve had this thought before. I’m going to try my best to let this thought go.”

What would make you feel better from others, including parents and friends?

For me, it would be for people to not pretend [my Pompe] isn’t real. I grew up in a very traditional household, and I’ve advocated for more communication. Just checking in means a lot. For example, during infusion days, it’s nice to receive texts asking, “How are the infusions going?”

Everyone’s comfort level when talking about Pompe disease is different, so I think it’s important to let people know how much we want to talk about it. I’m an open book about it, so I’m happy to discuss it.

The same goes with friends. Just checking in helps. I think it’s difficult for some people to understand that they don’t have to tiptoe around the issue. They can be very up front when talking with me about it.

Medical teams could always ask more, too, such as, “How are you progressing or regressing?”

Really, everyone can be more open about it with me. Another example: I appreciate that my boss will sometimes ask how my workload is and if it’s too much. That means a lot, because it’s thoughtful and at the same time doesn’t minimize me, which is nice.

Tell me what drains your batteries.

I work with adults with disabilities as a board-certified behavior analyst. I work four days a week in the field. It takes lots of energy to be an effective trainer and bring my A-game consistently.

With Pompe, I’d say I have a lower tolerance of stress. At the end of day, I’m a husband, dad, employee, and son. However, on top of all that is the added stressor of living with Pompe disease, which lowers my overall energy levels and stress tolerance.

I remind myself that I have to work out. I have to expend energy to work out. My energy level does swing a lot.

What in general would make it better for you mentally?

More sleep. Some “me time” during lunch to recenter myself and meditate. Breaking big tasks into small tasks and knowing that I can’t get it all done and that’s OK. Also, simple stuff like thinking, “Am I hydrated? What am I eating? Have I checked on myself lately?”

Accepting who I am and being my own cheerleader is also important. I’ll never forget my therapist saying, ‘Tell me what makes you a good person.” After the chain of negatives during my prediagnosis journey, I hadn’t talked about the good in a long time.

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.