Managing a chronic illness is difficult – even when you’re a medical professional. For nurse Melissa Edmonds, having myasthenia gravis has impacted every aspect of her life.
“I’ve had to slow down... MG will do that to you, whether you want to or not,” Melissa shares.
A nurse in a critical care setting when she experienced her first symptoms, she soon found she couldn’t care for ICU and step-down unit patients on 12-hour shifts. She had to reduce her hours and accept more flexible nursing opportunities as her symptoms set in.
At 32, she’ll sometimes use a rolling walker at night, when her muscles are most fatigued. Long nights out with friends are taxing. Chasing her two little girls around isn’t always feasible.
Despite the upheavals Melissa and her family have gone through, she remains upbeat. She’s developed a mindset that serves those with chronic illness so well:
Take it day by day.
“Just recently I had to take a few days off because I was tired. In my head, I was beating myself up. I had to tell myself, ‘Stop. Don’t worry about it. Don’t worry about being productive all the time. Don’t beat yourself up about it. Just be up front about what you need.’ It’s the new normal.”
Getting to her MG diagnosis was also a challenge that required patience, flexibility and determination. Despite working in a hospital, she faced roadblocks to diagnosis and treatment that are familiar to many MG patients.
Her initial symptoms of muscle weakness were misunderstood as somehow her fault – she wasn’t taking care of herself, she needed to get more sleep, she was having an anxiety attack. Melissa already suffered with chronic pain, so the doctors compounded that issue with her MG symptoms.
A bevy of tests proved nothing definitive. The neurologists she saw initially said it was nothing.
“That was my first dose of reality as a patient. I felt like I was being judged because they were giving me pain meds and anxiety meds.” Her doctors weren’t putting everything together.
Many times she arrived at the ER, people didn’t believe her symptoms, telling her she was having panic attacks.
In the end, it was three years before a new provider, reviewing her chart and symptoms with a fresh set of eyes, diagnosed her with MG.
Because of her professional and personal experience with medical crisis, Melissa has become an advocate for patient education. When she was in MG crisis not long ago, she pulled out MGFA pamphlets to share with the EMTs and the nurses at the hospital. She wears a medical alert bracelet so medical professionals will know what to do.
“MG symptoms are so different for each person – it's a ‘snowflake disease,’” Melissa says. An EMT might assume stroke if they see facial drooping and the patient is unable to speak well enough to explain. Providing the care team with a clear picture of your disease can be lifesaving.
MG has also changed the way Melissa practices medicine. She is a more thoughtful listener, more willing to think outside the box. She has more patience with chronic pain patients because she has been in their shoes.
“It makes me a better advocate for prescribing meds to them and taking care of them with more compassion,” she says.
To other MG patients, Melissa offers this advice:
“Be kind to yourself. No matter what your symptoms are, it’s exhausting. Whether it’s a fatigued muscle or a fatigued mind, whether you’re 32 or 62, just remember to slow down. We all should slow down sometimes.”