When I began this journey with autoimmune and chronic disease my children were 5 and 7 years old. I want my kiddos to be kiddos as long as possible. They shouldn’t have to be concerned with adult things like bills, work, stress, illnesses and so on. So for a long time I didn’t tell my kids anything. Nothing at all.
But there’s a problem with that and I didn’t realize it at first. My condition, the number of doctor’s appointments and the side-effects of the meds I was on impacted their lives.
The symptom that showed up first was fatigue. And not “I didn’t get enough sleep and now I’m tired” or even “I am physically exhausted from all the work I did.” It’s a literally can’t force my eyes open, can’t drag myself out of sleep, can’t function fatigue. I’ll talk more about fatigue another day.
But basically, fatigue is a major factor in my life now. Just as with my pain – some days are better than others – but it’s a major factor nonetheless. It’s hard to hide from the kids. It causes me to experience a great amount of guilt.
Mommy’s too tired. Mommy needs to rest. Mommy can’t run around and do all the things with you that she wishes she could.
These are my realities. And it breaks my heart.
I think every good parent worries that they aren’t doing absolutely everything right – none of us are perfect, none of us can do everything and anyone that is a conscientious parent would worry about that at some level. Not worry about it to the point of obsession, but be enough concerned about it that we always try to do our best, and try to be better.
So there’s the normal amount of “am I the best parent I could be” parent guilt and worry. And then there’s the “this invisible disease that you guys don’t really understand, or for that matter even really know about, causing me to be a far less physically active with my children.” I have a huge fear that my kids will look back on their childhood and feel like their mom was lazy or didn’t play with them.
And then there was the medicine. Some medicines that I tried had horrible side-effects. One made me feel like a zombie…I didn’t just have periods of fatigue, it was non-stop. Some of the medicines were self-injectibles and my children were aware that I was giving myself shots. And depending on which set of meds I’m on at any giving moment, there are often MANY different medicine bottles on my bathroom counter. Far more than the average 36-year-old mom.
The doctor’s appointments and blood work. I tried to schedule my appts for when they were in school, but during the summer they’d know about them and occasionally they came with me to get blood drawn for labs. They were aware that I was going to doctors more than most people.
So I finally realized that it would better to be more upfront about it all. Hiding things from them to “protect them” just made is so that they didn’t have a clue why things were changing. And although I don’t want my fatigue or pain to be an excuse for not being as active with my kids as I’d like, I would like my kids to realize that it’s not because I’m lazy, don’t want to or don’t care.
But how much is the right amount? How much do I share? How much can they understand without scaring them or making them worry? These are not easy questions.
Mostly I refer to it as “mommy’s health issues.” The kids know that I have health stuff going on that causes pain, fatigue, made me so that I can’t wear contacts and that causes me to go to doctors and try to figure out which meds will work for me. But I haven’t addressed the “autoimmune” aspect yet. We haven’t talked about the fact that it’s permanent…there is no cure. And we haven’t talked about that fact that depending on which autoimmune diseases I have exactly, they may be degenerative and I may get worse over time. They have said “I hope I don’t have those issues, too,” to which I respond “me, too!” after which I say a quick prayer that they don’t.
For now that’s where we’re at. I don’t know if it’s enough, too much or about right. But mostly I’m just cranky that this is one more stress and concern in my life caused by the fact that my body is attacking itself. Stupid diseases.