Facing change can feel overwhelming in life with LEMS

This time of year entails so much change. A new school year brings new teachers, friends, and routines. Stores are full of clothes, backpacks, and freshly sharpened pencils. For most of us, these kinds of transitions are welcome. But life also brings changes that are much harder to embrace.

For those living with a rare disease like Lambert-Eaton myasthenic syndrome (LEMS), change can be frightening. When so much of your life revolves around managing a complex illness, even a small adjustment can feel overwhelming.

When our daughter Grace was diagnosed with LEMS at age 15, our lives changed overnight. At the time, my husband was serving in the Navy, and we were immediately moved to the other side of the state so that Grace could be closer to her doctors. It was an unexpected but necessary change.

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Eventually, Grace settled into a treatment plan that worked well. Her strength began to return, she gained weight, and, most importantly, she no longer lived under the crushing fatigue that had plagued her. For the first time since her diagnosis, we could breathe.

Then her doctor told us he was moving away.

Fear overwhelmed me. This doctor knew Grace and understood LEMS. He had been the one to finally put a name to what was happening to our daughter.

My mind immediately filled with questions. Will we find another doctor who understands LEMS? Will they continue the treatment plan that’s been working so well?

Thankfully, we found another doctor, and Grace continued to receive the care she needed. But the experience taught me something I continue to learn: Change is inevitable.

As much as I would love to keep everything the same, I can’t stop time from moving forward. Doctors move away. Pharmacies change. Grace’s college graduation gets closer. Every shift brings a new layer of uncertainty.

Lately, I find myself thinking about Grace finishing college. What will happen when she is no longer covered by our insurance? Will she be healthy enough to work full time?

Those questions can feel overwhelming, but I’ve found several things that help me cope with them.

Gather facts

An unwelcome change can be stressful, and the questions come quickly: How will this affect Grace’s medical care? What do we need to do to make sure there isn’t a gap in coverage? How will we pay for her medications and treatments? What do we need to do next?

I’ve learned to give myself permission to feel those emotions. But once I’ve had time to process the change, I find it helpful to begin gathering facts. I ask questions and make phone calls. I research and talk to people who have the information I need. Finally, I try to separate what I know from what I fear.

Knowledge is power

I have also learned the importance of finding people who understand what we’re going through. Living with a rare disease can feel incredibly isolating.

Our Lambert-Eaton LEMS Family Association and LEMS Facebook groups have been invaluable sources of information, encouragement, and shared experiences. Connecting with other families who understand the journey reminds me that we aren’t walking this road alone.

Sometimes, knowing that someone else has faced the same question — or survived the same difficult season — is enough to give me courage.

My faith matters

Of everything that has carried me through this LEMS journey, my faith has been the most important. There have been countless moments when I felt anxious about Grace’s care. Some questions about her health I simply cannot answer.

That is where my faith becomes my anchor. I don’t know what Grace’s future will look like. I don’t know who her doctors will be 10 years from now. But I do know this: I don’t walk through this life alone.

My faith reminds me that even when I cannot see the whole picture, God can. I only see a small piece of what God is weaving together in Grace’s life. I don’t know why some things have happened the way they have. I certainly wouldn’t have chosen the LEMS journey for my daughter. But I trust the one who sees the entire picture.

Change will continue to come. I may never welcome it with open arms, but I am learning that I don’t have to know what tomorrow holds in order to face it. Because, while I don’t know what the future holds for Grace, I believe that God holds her future.

And for today, that is enough.

Note: Lambert-Eaton 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 Lambert-Eaton News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenic syndrome.