by Danielle Dwiggins
about the author:
Danielle Dwiggins is a nurse, wife, and mother. Her son has Duchenne and she was recently diagnosed as a carrier of Duchenne Muscular Dystrophy.
Fighting for Myself
As a mom and a nurse, I’ve always taken care of others before myself.
It’s easy to fall into burnout. How am I supposed to take care of myself when everyone else needs me, especially my son? I can fight the good fight for him, but how can I still have enough to give to fight the fight of a carrier?
As anyone in the DMD community knows, the answer is simple: we don’t really have a choice but to keep fighting. Burnout comes and goes, but DMD is forever. We started the DMD journey knowing it was our son we were fighting for. But when it became a fight for myself too, I fell apart.
How does one rebuild knowing that they caused their son’s fatal illness AND discovering one’s own chronic illness? This is where I’m lost. I have cared for many with chronic illness as a nurse and have helped them cope.
But who is here to help me? Not the doctors I fight to get the proper care, the ones who don’t believe the symptoms are real. Not my family who also carries the same burdens of having a son with DMD and autism.
The First Fight: Doctors
I had my first cardiology appointment in December of 2021. The doctor performed an EKG and echo, all of which were normal. He told me they do not do cardiac MRIs because they were unnecessary, and insurance does not cover them. He said not to come back unless I had symptoms.
I was frustrated and confused: this was against everything I’d researched and been instructed on about carrier care. And my son’s neuromuscular doctor was the one who sent me to this doctor. I quickly lost trust in my son’s healthcare team because of this.
My life changed when I attended a cardiology session at a conference in April of 2023. I knew the cardiologist presenting was destined to be my doctor. When I got home, I quickly got in contact with his office. Two months later I drove 4 hours to see him. For once I was taken seriously.
When I told him why I decided to seek him out, he was surprised about the doctor I’d seen two years earlier because of how accomplished he is. No matter how accomplished a doctor is, they do not know everything about carriers. But this new doctor asked all the right questions and ordered all the right tests.
My first cardiac MRI scared me, as I did not know what to expect. A small space, IV contrast, lots of breath holding for what seemed like forever. Weeks later, I received my final results: subclinical cardiomyopathy. That meant no physical symptoms, but the MRI showed abnormalities.
At first I was devastated and feeling lost. It eventually turned into anger towards the carelessness of the first doctor I saw. It turned out the MRI was necessary, it was covered by insurance, and I had a heart condition without current symptoms.
We are supposed to trust our doctors’ knowledge and take them at their words, but with rare disease it’s not always black and white. It scares me that other carriers may go without proper care because of this trust. For some carriers, they may not get care until it’s too late.If you feel in your gut that you need something more, follow it.
If you feel in your gut that you need something more, follow it.
The Second Fight: Myself
My husband has admitted that even though we didn’t know before our son’s diagnosis that I was a carrier, that he still feels a deep-down blame towards me at times.I know this is part of the grieving process, but it’s not easy to hear. I understand how he feels, and I know that many carriers feel this way about passing the gene to their children. Overcoming the guilt is only one of the battles we must fight as carriers.
I know this is part of the grieving process, but it’s not easy to hear. I understand how he feels, and I know that many carriers feel this way about passing the gene to their children. Overcoming the guilt is only one of the battles we must fight as carriers.
I constantly fight the battle of keeping things in balance. My son requires care, my daughter still needs me, and my husband still needs a wife. I have not prioritized myself; there is not enough time in the day. My getaways are for doctor appointments and physical therapy. My whole body hurts all the time, I’m tired, I’m weary. But everyone needs me. That will never stop.
I recently burned out severely. I’m writing this on a mental health day because I cannot go on like this. My son has many people fighting for him because he cannot fight for himself. But I’m fighting for myself because I’m the only one who knows how.
With Duchenne, there will always be an uphill battle. Life is too short to stand at the bottom of the hill, looking up. If we keep fighting, we can make it to the top and live a balanced life. And then, just maybe, everything will be okay.
More To Consider