I made the choice upon diagnosis to keep my illness a secret. It's easier for my and for my child if the world doesn't know. This way I don't have to explain, answer questions, or accept pity.
Health Parenting

The Truth About Parenting When You Are Secretly Battling A Chronic Illness

I made the choice upon diagnosis to keep my illness a secret. It's easier for my and for my child if the world doesn't know. This way I don't have to explain, answer questions, or accept pity.

The author of this piece has chosen to remain anonymous. 

I have an autoimmune disease, but no one knows. Ok, a few people know, like my mother, husband and best friend. But I can count on one hand the people who know I am afflicted with this disease.

When I was first diagnosed, I was in shock. I was always healthy, took care of myself and never felt “sick.” After getting this diagnosis, I felt terrified over what could potentially happen to me.

Like many people, I held the notion that anyone with this disease was really sick, confined to a wheelchair type of sick, because the only people that I knew who had it were advanced cases. However, after being diagnosed, I researched everything related to this condition and found out that the majority of people do not end up disabled and do live full lives, but given that there are so many public misconceptions about it, I was hesitant to talk about it with anyone.

I never wanted to be seen as “sick.” I don’t want anyone’s pity or that look that people give you when they are feeling sorry for you. It just felt so exhausting to explain it to all of these people. To share the story of how I found out, of what the diagnosis means, of having to reassure people that I was in fact still feeling fine. All of that just felt daunting. So I told virtually no one. I kept living my life. I did all the things I was already doing: working out, eating well and taking a medication aimed at keeping the disease from progressing. This required me to give myself a shot every day. So every night before bed, I stab that needle into my arm, thinking I will do anything to prevent this illness from ever manifesting in a disruptive or debilitating way.

Sometimes I had to be creative so no one found out. When I was younger and went on trips with friends, I would hide my injection needles in my makeup bag and disappear into the bathroom at night to take that shot. Now, when we have friends or a babysitter over, I make sure to hide the needles and needle disposal container.

Why not just share this with some friends? What is the big deal?  To me, it was a big deal. A really big deal. It is one of those things that is so personal and that once you share it, you can never take it back, so it felt really important to be careful with whom I shared this information.

As outgoing and social as I could be, I was always very private about my own life. Sometimes, I would meet people so open about their life and circumstances that I was both shocked at their openness and at times envious that they could speak so freely, not worried at all, about their most private issues. But when this diagnosis happened to me, I just personally never saw much to be gained from telling everyone about it. I wanted to absorb this on my own with the support of the very few other people I had chosen to confide in.

On the outside you would never know anything was wrong. I am blessed to be in the group of people with this disease who have no obvious symptoms, no physical impairment, but I do struggle with debilitating silent symptoms. One of these being extreme fatigue. I know all moms are tired, very tired, but imagine feeling “newborn baby” tired every day. Some days it is like being back in those early days when your baby woke up every hour and you thought you were delirious from fatigue.

During those kinds of days, which sometimes go on for weeks at a time, I feel so much guilt when I can’t do certain things. I have to prioritize what is most important and let the rest just be. I often force myself to wake up early and exercise because I feel stronger and it protects me against my disease (and I like my favorite jeans to fit!), but mostly on these terrible days I just make sure my son is taken care of, fed, clothed, finished with homework and, most importantly,given a lot of love. But on those brutal days, especially in the bitter cold weather, it is hard to do anything extra. My body just needs rest.

Sometimes, the guilt over this is all-consuming. My husband is a saint and helps out in any way he can, but when I see moms and kids all running to the park after school or going to a million activities on the weekends, I feel the guilt creep in that I can’t take my son more places or do more that day.

Some days, when people ask why we didn’t come to a school festival or event, I just smile pleasantly and say one of my pre-scripted answers: “We were feeling a little under the weather, we had guests over, or we already had plans that day.”

Thankfully, I am blessed with an easy-going little boy who may love to be out but also really loves to play at home, so he has not expressed any disappointment if we have to miss something. I try to create fun things to do at home when we can’t make it out. On those particularly awful Saturday mornings when I feel the debilitating fatigue come on, we have our routine that we call “bagels and snuggles.” I toast fresh bagels and we curl up on my bed together watching episodes of his favorite show, the Thundermans. Some Saturdays that is all I can manage.

Sometimes my friends affectionately joke that I am “that” mom at school pick up, the one with her hair done and heels on (not because I am some holier than thou mom, but because that is just how I am more comfortable), and for me it feels better to look nice on the outside when I often feel so broken on the inside. When the PTA president joked with me at a recent event and said, “Seriously, do you ever have a bad hair day?” I just smiled back, complimented her as well, and in my mind I thought, If you only knew how I felt on the inside.

For now I will just keep going, keep trying, keep smiling, but always keeping in mind that behind every other mom’s smile, there may just be a secret that she is not ready to share.