Confronting loneliness and isolation in life after diagnosis

When my husband, Ty, received his myasthenia gravis (MG) diagnosis over three years ago, I didn’t know what to expect at first. Initially, we were in fight-or-flight mode. Between trying to figure out how to manage his symptoms, going to specialist appointments, and creating a new routine, we didn’t have much time to focus on anything apart from what was happening in our home.

Things only got worse after his MG symptoms progressed. On top of MG came a Graves’ disease diagnosis, which can also significantly affect the muscles. It began to impact almost all of Ty’s voluntary muscles, and doing simple tasks became more difficult by the day. From my perspective as his caregiver, it seemed like my husband only had the strength of a newborn baby at times.

It felt impossible to find time to do anything other than manage the disease. His voice was no longer strong enough to speak consistently. My time was limited because I was taking care of our two boys and now Ty. As a result, some of our relationships with friends and family changed, which was a hard pill to swallow.

Play dates with friends and their kids no longer happened because leaving Ty home alone wasn’t an option. Double dates were something we had looked forward to, and that wasn’t possible anymore, either. Attending family holiday gatherings wasn’t even a thought at that point. Slowly but surely, our “normal” lives became a distant memory. We felt lonely.

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Despite the drift in some of our relationships, others grew stronger. We decided to make a conscious effort to appreciate the ones that remained consistent instead of lamenting those that weren’t. Our options for connecting with others were limited, but there were people like my mother who showed support in the ways that they could.

My mom lives five hours away and works full time, yet she found creative ways to make sure we felt love from afar. Simple gestures like FaceTime conversations to cheer us up meant a lot. She would frequently send us encouraging Bible passages to remind us that there is hope. Her actions taught me ways that I could show up for others, too, should they ever end up in a similar situation.

The most support came from someone we hadn’t expected: our oldest son, Chi, who was 14 years old at the time of Ty’s diagnosis. We tried our best to make home feel as normal as possible, but with the condition Ty was in, it became difficult to conceal what was happening.

Chi never hesitated to help with anything that would make our daily lives smoother. He even started doing more chores without prompting. He asked questions to truly understand of how MG affects his dad. Chi’s humor brightened our days, and his check-ins continue to warm our hearts today. I don’t think he fully grasps how much his presence and actions mean to us.

It’s easy to blame yourself for not finding a way to stay connected with loved ones as you’re learning to navigate a new chronic illness. It’s even easier to blame others and feel like they’ve abandoned you or no longer prioritize you. But if someone were to invite us to an event, we likely wouldn’t be able to attend anyway. So is anyone truly to blame? I don’t think so.

The truth is that chronic diseases are hard to manage for anyone, and they don’t affect only patients. Some people find it hard to face their loved ones when they’re in a vulnerable state, so they avoid them. Others may have a hard time finding the right words to approach a patient about their experiences.

I had to learn to accept our new reality and to not take things personally. Ty also adopted this mindset and focused more on his mental health. We stopped assigning the responsibility for showing up to others, because in the end, you never know what others may be going through, either.

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.