What It’s Really Like Being A Mom With Chronic Illness

When my son was 2, the joint pain I’d had all my life suddenly got worse. I noticed new things happening to my body, too. I was tired in my bones in a way that no amount of sleep seemed to fix. I was short of breath all the time and getting dizzy walking from room to room at home. As a boxer, I knew my cardio was up to snuff; this shouldn’t have been happening. The headache or two I had each week turned into a daily skull pounder, starting every afternoon and building in power until bedtime. It was getting harder and harder to work, care for my son, and then feel like doing literally anything other than crashing into bed.

Roughly 70 million U.S. citizens, or 1 in 4 people, live with at least one disability, according to the CDC. Only about 6% of disabled people use mobility aids like canes or wheelchairs; the vast majority of those 70 million folks have invisible illnesses: conditions that affect their ability to function, but that you’d never know about unless they told you. I had no way of knowing I was one of them until my symptoms got so bad, it was difficult to function.

By the time my son was 4, I’d been diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) — a genetic connective tissue disorder — along with fibromyalgia and postural orthostatic tachycardia syndrome (POTS). Fibromyalgia is a disorder of the central nervous system in which the brain amplifies existing pain or creates pain in places where there’s no physical reason for it to be. POTS affects the autonomic nervous system, making it difficult for your brain to properly regulate all the “automatic” functions your body performs without you thinking about it, like breathing, heart rate, temperature regulation, digestion, and more.

While I knew my joints were a problem, I had no idea how f*cked up my brain was. But as diagnoses do, finally having names for my conditions allowed me to understand just how wide-ranging their symptoms can be and how much they affect my daily life. I had long suffered with a lot of seemingly unrelated health issues, from painful periods to daily tension headaches, but now I knew that hEDS caused them all.

The Daily Challenges

Not sure how else to say it: If I’m awake, I’m in pain. Whether it’s joint pain, muscle pain, headaches, or TMJ, something hurts every minute of every day. Ibuprofen helps a little, but it only takes the edge off.

Then there’s the fatigue. If you’ve never had fatigue, it is not the same as being tired from a lack of sleep. Fatigue is the sort of bone-deep exhaustion that no amount of sleep can fix. When I’m fatigued, my brain doesn’t even have the energy to regulate my thoughts and emotions. I cry at random, and my thoughts can get pretty dark; I feel like I can’t access my personality or feel joy. Nothing sounds good to eat, watch, or do. I can’t even pay attention to anything, like a show or book, long enough to pass the time.

POTS is what makes my daily life the hardest; simple tasks like picking up toys, carrying laundry down the stairs, or vacuuming make me dizzy and short of breath. Sometimes I get blurry vision or black out a little. It’s not possible to chase after my kid or play soccer in the yard. These are things I might be capable of in pain, but simply can’t do when my autonomic nervous system won’t allow it.

(Side note: Having these issues doesn’t preclude me from the other normal aches and pains of living. Your girl still has period cramps like everybody else.)

The Unpredictability

While those symptoms never really go away, all three of my conditions come with flare-ups — periods where symptoms intensify following a specific trigger, or sometimes at random. Some of my triggers, like alcohol, are avoidable. Others, like getting overstimulated, are not (you can only do so much when you live with a 5-year-old).

It’s difficult not knowing how you’ll feel week to week, day to day, or even hour to hour sometimes. It means a lot of flaking on plans, telling my son “sorry, Mama can’t right now,” and letting even commitments to myself fall through. Banking on the future is just... not a thing. Once your health bottoms out, you stop expecting your body to be reliable and start making plans through the lens of, “Can I do that at my worst, or will it be OK if I cancel?”

The Admin

Everyone on Earth is busy, I know, and parents in particular have so little time for themselves. Personally, I would just be happy to gain back the time I spend on f*cking health care admin work. Managing my health is basically my part-time job.

Making appointments, new patient intake paperwork, researching symptoms and treatments, picking up prescriptions, messaging doctors, gathering documentation for insurance appeals, actually going to the appointments, doing physical therapy exercises — it all eats into so much of my time during the week. It feels like I’m constantly spending so much time and money (even with insurance), basically doing the jobs of all these people who are supposed to help me for them, and all of it to only feel a little bit better.

The Guilt

There is a big impact on your family dynamics when you have chronic illness. My husband is incredibly supportive and has never once complained about picking up my slack on days I don’t feel well. But I often feel the urge to “make it up to him” in my mind by going above and beyond cleaning, meal prepping, and doing other housework when I’m able. Pushing myself this way has sometimes resulted in a flare, and I’ve had to work on just accepting his support and understanding that it’s not conditional. He does it because he loves me and wants me to rest, not because he expects me to pay him back later.

You would think the hardest person to explain my chronic illnesses to would be my 5-year-old, simply because they are invisible and so complex in nature. But honestly? He has taken it all in stride. The first few times I had to set a boundary — “I’m sorry, buddy, Mama can’t chase you outside” — I definitely got some pushback. But over time, he has learned how to make accommodations without me even asking.

If my body hurts too much to sit on the floor and play, he says, “That’s OK!” and brings the toys to the couch. When I am too fatigued to dream up dialogue for the Pokémon figurines he wants to battle me with, he grabs the remote so we can watch a movie and cuddle. I feel guilty and like I’m always telling him no, but in reality, I’m usually saying yes, just in a way that won’t cost me. That’s fair and an important thing for a kid to learn. I hate toxic positivity and the whole “I’m grateful for my condition because it made me a better person” shtick, but it does make me proud to see him adjust so fluidly to others’ needs.

Logically, I know all these things, but the feeling of guilt is still there. It probably always will be because I will always love my family and want to give them everything. I just try to handle it as it comes, another symptom among all the others and not a reflection of anything I’ve done wrong.