There is almost no greater compliment than when someone meets me for the first time, and has no idea that I’m sick. I call it the Autoimmune Mom life.
The Autoimmune Mom life is all about the disease of not looking sick.
Over a decade ago I was diagnosed with multiple sclerosis. At the time, my diagnosis was a tremendous relief. You see, I had been having some scary symptoms. I experienced sudden vision loss, impaired cognitive function, and debilitating fatigue. Next, doctors and nurses spoke about possible causes using words like “stroke” and “brain tumor”. Ultimately I was terrified.
Multiple Sclerosis (MS) is an incurable, chronic autoimmune disease. MS affects the central nervous system. Multiple Sclerosis symptoms can be unpredictable and vary in intensity. There are more than one hundred autoimmune diseases including Lupus, Rheumatoid arthritis, and Guillain Barre Syndrome. Early on, I found support from resources such as the National MS Society. Nonetheless, my disease progressed as the years went on. Before long I lost touch with what it was to feel “normal”. The disease of not looking sick, when I was actually deeply afflicted, slowly took its toll. Most of my peers have no idea of my mobility challenges, diminished energy, and my quest to retain cognitive function.
In the end, my autoimmune disease shapes my approach to parenting. But not how one might think.
As a result of my autoimmune disease I have developed creative ways to work around my symptoms. Sometimes I “cruise” from surface to surface (like a toddler) to combat my physical instability. Even on mornings when my feet feel like cement blocks, I know that my children depend on me. I have to get through this. As a result, my day to day parenting is nimble and adaptable. Furthermore, my children have a solid appreciation for adversity. They see that I consistently weather health struggles and go to great lengths to be successful and strong. They also see my flaws and limitations with stunning clarity, and honor them. I have forged a path wherein they themselves have become more resilient and aware.
Knowing my limitations is really important. I regularly worked 16-hour days, filling my days with multitasking and overwhelming responsibility. I’ve grown to accept living like that isn’t possible for me now. Overdoing it just one day can lead to a full week of recovery.
There is a lot of discussion surrounding children with special needs and their unique challenges. Parenting a high needs child, requires lots of resources. However, I find less awareness surrounding parents who have a disability. While all parents will acknowledge parenting it hard, it’s a tougher gig for those with a disability. Autoimmune disease truly is the disease of not looking sick.
When a child looks at a mother with an autoimmune disease (or disability), they don’t see the disease. Children see their Mom. I cannot shelter them from my disability. Instead, I can offer reassurance and love. For me that is the Autoimmune Mom Life.