My husband and I rarely disagreed — until his myasthenia gravis diagnosis
Initially, we had very different approaches to his disease management
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Myasthenia gravis (MG) was the first major challenge my husband and I faced within our marriage. Before Ty received his diagnosis, life was smooth. I wouldn’t say things were perfect, but there was very little we disagreed about. Even when we didn’t see something the same way, the situation was rather easy to resolve.
Ty’s first symptom was ptosis, or droopy eyelids. Every once in a while, he would blink, and one eyelid would take a few seconds to reopen. I urged him to make an appointment with his primary care doctor because I had a gut feeling something wasn’t right. While he immediately scheduled a visit, he didn’t seem worried at all. His lack of concern alarmed me, but I ignored it.
At the appointment, Ty’s doctor thought the ptosis might be caused by allergies. That’s the thing about autoimmune diseases: They can take years to diagnose. The nurse in me still suspected that something else was going on, so I pushed him to schedule an appointment with an ophthalmologist. Again, Ty didn’t seem worried, and I was puzzled and slightly irritated by his passivity.
The ophthalmologist immediately suspected MG and referred Ty to doctors who specialized in treating it. I asked Ty if he was scared, and he told me he wasn’t. I should have been relieved that he was being so positive, but instead, I was annoyed that he wasn’t as afraid as I was.
The pressure begins to rise
Over a year after the ptosis started, Ty started experiencing double vision so bad that he had to wear an eye patch to avoid seeing two of everything. Then came the extreme muscle weakness that significantly affected Ty’s ability to do daily tasks. This is where we began to butt heads a bit.
My concern for his well-being grew. Despite the lack of strength, he would still push through what I considered unnecessary tasks, further weakening his muscles. That’s what happens with MG. Repeated use of the muscles worsens symptoms.
That didn’t stop him. I would offer to help with things, and he would decline. My anxiety began to rise through the roof because I felt he wasn’t listening. I started to feel like he didn’t care enough about himself to just stop and rest.
Many days felt like a back-and-forth between Ty trying to prove how much he was still able to do, and me trying to convince him that he shouldn’t be doing so much. It got to a point where I had to beg him to go to the emergency room because his choking had become too frequent. Of course, he refused. He was determined to power through.
I shut down. I still helped with everything he needed, but I had to accept that we just didn’t see his disease management the same way. We started tiptoeing around MG-related conversations to keep tension at a minimum.
Finding common ground
Therapy and taking care of my mental health as a caregiver gave me a new perspective. In my sessions, I realized I could be more understanding of Ty’s response to his illness. His life had changed beyond his control, and he was simply trying to maintain as much control as he could. What I viewed as stubbornness, he viewed as perseverance.
Through his own reflection, my husband learned more about how I’m affected by his MG. He read articles and listened to podcasts to better understand a caregiver’s experience. He now recognizes that I’m not trying to control him when I ask him to relax. I’m simply concerned and trying to protect him as he’s always done for me.
After months of uncomfortable conversations, we found a way to trade defensiveness for curiosity. Instead of firing back at each other, we decided to pause and really try to understand what the other person was feeling. By owning where we were going wrong individually and practicing patience and vulnerability, we were able to return to our safe space.
Though life was different, we got back to being ourselves. One of our favorite sayings is: “It’s not us against each other, it’s us against the problem.” Somehow, in the midst of this struggle, we lost sight of that. We vowed to never allow this disease to disrupt us in that way again.
Note: Myasthenia Gravis 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 Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
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