We sit in the waiting room as we have so many times before. I can’t help but look around and note it is full of older people. And me. It has been this way for quite some time. You’d think I would have been used to it by now, having been diagnosed with lupus all those years ago. But it seems each visit brings with it the searing reminder that I am not like the others. Young or old. Because while still young, I need to be here now.
I inhale deep, feeling my anxiety rise, as I scour my purse for an activity for my two-year-old daughter. Anything to prevent the dreaded meltdown. I can feel what little energy I have pouring out of me as I search, and my aching joints faithfully remind me of my unrelenting disease. I tell myself we just have to make it through. Make it through one more appointment.
But there are so many appointments. Too many appointments for me and my girl.
Five minutes pass, and we watch as a tall woman in a white coat and stethoscope exits the waiting room. I can’t help but recall my own white coat and stethoscope tucked carefully away at home. And with it, my career as a nurse practitioner.
I exhale slowly, knowing I wear a different coat now. A stained coat, in need of a good dry cleaning. I am a stay at home mama. Or at least that’s what I tell people. It somehow seems easier than explaining the ins and outs of debilitating disease. I’ve just grown tired of scaring people, and watching the discomfort of my reality rest on their faces.
My reality, like so many with an invisible illness, is far from what it seems. While I have a two-year-old attached to my side, my life has felt anything but youthful. My reality is that of chemotherapy and hair loss. It is that of prednisone and weight gain. It is all-consuming exhaustion and a wheelchair. It is hip replacement surgery and a handicapped sticker for my car. It is rashes and anemia. It is enlarged lymph nodes and painful swollen joints. It is going from doctor to doctor and jumping from one health crisis to the next. It is feeling beaten down and, too often, out of control on all accounts.
But these are not play date conversations. These are not the type of things you can lead with around the table of juice boxes and animal crackers. It seems the sicker I become, the more irrelevant I feel among my own peer group. Discussions regarding the latest preschool or outdoor adventure couldn’t be further from my reality. Didn’t they know it took just about all I had to make it to said playdate?
I have struggled for a long time with what others think of me. I have never wanted to appear weak, so I have put on a brave face in public only to fall apart in private. But that only works for so long. Because sometimes invisible illness becomes visible.
I have longed for others to see me, not as a victim or a lazy person, and not as a weak person or “the sick one”. I think, too often, healthy people can become numb and even callous as new health crises repeatedly arise for those of us who battle chronic illness, and without them even realizing it, we are placed in one of the above categories.
But we are more. More than a label or category, and those who stick by us see our gold.
Truthfully, I no longer have time to worry about such things. Because now I’m a mama. And that girl of mine, she lights up my whole world.
Even still, most days I feel like I’m drowning. And I can’t come up for air.
Motherhood for me has come at a price. Because being a mama, to me, means putting her first. Every single time. This has meant less rest, ultimately leading to activation of my disease. It has meant shielding her from the darkness of chronic illness so that she can feel safe. It has meant sucking it up in countless waiting rooms when I feel like I’m going to pass out on the ground but stubbornly know I can’t because I need to be strong for my girl. It has meant not doing my hair or even taking a shower every day because I know I’ll need that energy to care for her instead.
It has been said that every mom is faced with guilt of some kind, commonly referred to as “mom guilt”. Being a mom with a chronic illness has added a whole new and unwelcome piece to this pie. More days than I’d like to admit, it is all I can do to get off the couch and play with my girl. My guilt haunts me as I tell my daughter we can’t play outside during most of the day, as I need to avoid all UV exposure. My guilt weighs on me as I watch the dishes pile in the sink, knowing there are three loads of laundry that haven’t been touched in ten days. My daughter thinks of this pile now as her new fort.
All the while my body screams at me for rest.
People often look at my daughter and ask my husband and me if this is the happiest time in our lives. And I never know how to respond. The joy that my girl has brought to both my and my husband’s hearts is unexplainable. She is, by far, our best gift in life. But most days I just wish things weren’t so hard. I wish we didn’t have to face the crushing pressure of my disease. I wish we could live easy. Even for a little while.
Being a mama is hard. Being a sick mama is harder.
Sanober Khan says, “This life has been a landscape of pain and still, flowers bloom in it”. And that girl of mine? She is my flower.
Erica Maver is a 33-year-old nurse practitioner, blogger and stay at home mom to her two-year-old daughter. She is the wife to the most wonderful man. She has been living with lupus for the past 12 years and writes about facing pain of all kinds under the umbrella of faith and finding hope in dark times. You can read more from her at her blog: https://hecarriesmyworld2.blogspot.com