I lie in a dark room, pain throbbing from the front of my eye to the back of my head, feeling like my eye is straining in its socket and praying to be released. I have stomach cramps and nausea, but within a few minutes, my alarm will ring, and I will have to rise from the ashes to get my son and daughter ready for school. As my husband is traveling, all responsibilities for my six and eight-year-olds rest on me. Pretending to be cheery and energetic while trying not to vomit or scream from the pain is how I get through the morning routine. I nearly get through the entire routine until I get to the bus stop, and with the quickest goodbyes, I rush home to the toilet bowl. From a young age, I knew I wanted to be a mother, but I didn’t account for living with chronic illness as a mom.
From the age of 18, I have suffered from a variety of symptoms, including low energy, neurological restlessness, hair loss, weight loss, weight gain, nausea, extreme stomach spasms or cramps, recurrent kidney infections, swelling, rashes, tremors, exhaustion, migraines among many others. My symptoms can change from day to day, year to year. Each time I go to the doctor due to new symptoms, I am diagnosed with another autoimmune illness. I have accrued five autoimmune illnesses along with Mast Cell Activation Syndrome. I take a cocktail of drugs and supplements daily, along with a weekly shot and a monthly shot.
Autoimmune illness is when your body begins to identify a part of your own body as ‘foreign’ and strikes an attack on it. In essence, your body is attacking and destroying itself. The CDC defines chronic illness as ‘conditions that last one year or more and require ongoing medical attention or limit activities of daily living or both.’ I have both, a long condition that also affects my daily life. Not one of my autoimmune conditions has a cure and, in fact, are rare and under-researched. Many of the medications I take daily are experimental and have no proven research to back up their efficiency.
I have recently become more outspoken about my health conditions. Years ago, especially in my 20s, I pretended they did not exist. What surprises me is when I talk openly about my illnesses, others tell me about theirs. Many moms, just like me, are challenged daily by chronic illnesses, yet we still pretend that we are okay. One of the biggest challenges with chronic illness is that many of us don’t look ill. There is no way of telling if I am currently in a flare-up or struggling to get through the day.
My biggest question regarding my illness is how this will affect my children long-term. Will they spend years in therapy talking about how they got home from school and their mother was in bed with a migraine? Will they withdraw from me as I cannot provide the energy they need at this age? Will their learning development be impacted as I am unable to be fully present 24/7? These are the questions that keep me up at night.
My biggest challenge living with chronic illness as a mom is not about medications or quality of care. It is the guilt associated with not being able to give 100% as a parent. It is the guilt of knowing that I have to put my health first, which may mean missing out on a soccer match, not being able to help with homework, or missing a school performance. I worry that all of that will accumulate into mental illness or chronic illness for my children. Their inability to cope with stress or anxiety will, essentially, be my fault.
At times, I mourn the mother I should have been. The mother with all the energy and great ideas for crafting and outdoor activities. The mother who does not become exhausted after a long walk or the mother who has to lie down after a busy day at work. I wish I could give all of myself to my kids, and I wish I could balance my illness, my children, and my job much more efficiently.
As much as I have never given up on a cure or remission, I have to be realistic about my limitations. I have to rely on my husband much more than the healthy moms I know, and I am lucky to have an empathetic and understanding husband who knows when to step up, even without asking.
I hope talking openly about chronic illness helps other mothers to think more realistically about their limitations regarding their health. I hope it spurs those around them to aid and support them during those nightmare flare-ups. Talking will only create awareness, and hopefully, if our children can see our network embracing and supporting us during those rough times, they, too, will come to understand that their mother loves them more than the world but sometimes, to be the best mother, she has to look after herself first.
