Hellobee

When I look back on my first few years of motherhood, I was very lonely. There were a number of compounding factors that led to this.

One was that I was a graduate student living five hours away from my own parents, two hours from my husband’s family, and at least that, if not more than that, from all of my friends. I was friendly with my neighbors and those I went to classes with, but wasn’t really close to anyone yet.

Another was how young I was. I was 22 when I gave birth to Snowy. Mr. Snowflake and I hadn’t planned to start our family so young, and none of our friends were close to thinking about starting families. Now, as we are 28 and 27, a couple of our friends are just starting to have families. Our parents were older than us when they had us. Being so young in this experience, despite having lots of support (much of it long-distance), definitely made me feel alienated and lonely much of the time. I didn’t feel like I could relate to older parents or to my childless peers.

And then there were my illnesses. Illness is an incredibly isolating thing. Being undiagnosed, which I was until I graduated from grad school in 2016, was even more isolating for me than now having my diagnoses. I knew something was wrong with me. I felt absolutely awful pretty much everyday. I was never pain-free. And yet, I had no clue WHAT was wrong with me. I couldn’t get support from those with similar conditions because I didn’t know what those similar conditions would be. And the pain forced me further into self-isolation. The summer and fall of 2016 before my diagnoses, I cancelled so many social events. Mr. Snow spent several weekends attending weddings and family occasions out of town without me because I worked Sundays and my health prohibited traveling. So he and Snowy would go visit family, and I would feel so so alone.

February 28, yesterday as I draft this, was Rare Disease Day. I have over a half dozen conditions. Some are considered rare diseases; most are just massively underdiagnosed. Having disorders that even your doctors have to Google can also be a very lonely, isolating experience. I am surrounded by mostly healthy people. Healthy coworkers, healthy spouse, healthy child, healthy extended family. I am the one sick fish in a sea of mostly vitality.

Every day I have worries about how my illnesses affect me. Even when I’m not worrying about them, I’m just faced with the reality of my symptoms. My illnesses don’t define me: I am so much more than a disabled person. I am a mother, a wife, an educator, a writer, a sister, a daughter, a friend. That being said, my illnesses still ARE a big part of me, whether I acknowledge it or not. They impose very real limits on my life. If I do not listen to them, they can cause awful flares or worse.

This post probably seems very depressing so far, but that isn’t its intent. In fact, in recent years, and especially recent months, I feel much less alone than I ever have.

A huge part of feeling not alone to me has been my slow acceptance of myself as disabled and chronically ill, and my learning to advocate for this. I started writing about my disabilities and chronic illnesses openly, first on a small personal blog and then on The Mighty, at the beginning of 2017, so I’ve been writing about them for just over two years now.

Through being open about my disabilities and struggles, which has come to include writing about parenting and my opportunity to write openly here about chronically ill and disabled parenting, I have found a huge community of people supporting me that I never ever would have expected. Not everyone has been supportive, but a lot of people have been, people I would have not expected to be part of my village. I have so many people praying for me, supporting me, telling me that they’re there for me on my hard days, both in person and especially online.

There has been a lot of talk–good talk!–from the disabled community about Selma Blair and her openness about her illness and disability caused by Multiple Sclerosis (MS). She looked so incredibly fierce with her cane on the red carpet, and was so inspiring to people like me, other users of mobility aids, to use our canes and walkers and wheelchairs and not be ashamed.

I love that Selma is open about her reality as a disabled working mother. Her example makes me braver: it makes me want to also go forth fiercely, honest about the reality of my illnesses but also making the most of them. Her openness makes me feel like I don’t need to hide: I can be open. I can ask for help. And in doing these things, I have found a community of others. Family, friends, other moms, online and in real life, in church and in chronically ill circles and in places in between, all people that are thirsting for honesty and genuine human connection. All people that make me feel less alone

I am never alone, and neither are you, even on the days you might feel like you are, on the days it is hardest to reach out.