May is Lupus Awareness Month and when Mother’s Day is celebrated [its May 10 this year] and as someone who is a lupus patient and a mother, I wanted to share some things I have learned parenting with chronic illness.
For starters, just what is lupus?
Lupus is a chronic illness with no cure that is classified as an autoimmune disease, meaning your immune system sees the body’s own cells as invaders and mounts an attack against itself.
All types of chronic illness share one common thread; overwhelming fatigue.
Lessons I have learned
1) Getting pregnant
Lupus does not mean you cannot get pregnant. I found that part quite easy to accomplish to be honest, it was the pregnancies themselves that nearly did me in! There are genetic factors in lupus but there is no guarantee your child will inherit them. I understand some feel why take the risk, but for those who really want a family, lupus most likely will not prevent that—talk to your healthcare provider!
1) A tale of two pregnancies
When a lupus patient is pregnant, she is generally considered “high risk,” meaning she and the baby will be monitored closely, usually with extra lab work and more frequent ultrasound imaging. Most, and I use this term real loosely, have a cessation of disease symptoms throughout their pregnancy. Like the disease itself, no two lupus patients will experience pregnancy the same. I want to stress if you are one who does not experience a lull in flares, pregnancy can be an extended exercise in abject misery. I promise you it is worth it.
2) Sometimes the cow is dry
I really wanted to breastfeed. I wanted to participate in every part of being a mother, but this one aspect was definitely denied me on my first go round and most of my second. As a private person, it is a struggle for me to share this, and I only do so now because I vividly recall when taking my lack of lactation to Google, looking for answers or commiseration from my gender, I was hit with a tidal wave of unkind comments and judgement, but precious little advice or empathy. I went to the lactation specialist, I adjusted diet, I drank Mother’s Milk tea, I took the goat’s rue, okay? You name it and I probably tried it—all to no avail. Please don’t beat yourself up if you can’t breastfeed whatever the reason why. Yes, I agree it is usually best, but your child will still grow up healthy. Proof? My eleven-year-old is taller than me and my fifteen-year-old who was essentially born premature is also nearly as tall as me. They may be less energetic than I would like them to be, but ain’t either one of them dumb.
3) Fatigue is real and you cannot fight your body!
Accepting a diagnosis that is going to change your entire life—from how you dress, the activities you enjoy, to skincare products you use—can be challenging. Most likely a main factor in your fighting to be taken seriously at a doctor’s office to achieve the diagnosis in the first place was exhaustion. I am not going to lie—being a mom is tiring. It doesn’t matter if you are 100% healthy or you are fighting battles no one sees, a support system is key. I’ve said in the past it takes a village to raise a child, and it especially does among the chronically ill. There are days when you really are going to be too exhausted to get out of bed and slap so much as a sandwich together and those are the days you need someone in your life who recognizes this and allows you time to rest. Lupus has taught me that the whole body is needed for it to function and the same is true of the family unit, so you older kids with chronically ill parents, y’all need to step up!
4) Focus on the good days
Lupus sufferers all know there are good days and bad when dealing with this beast. I have learned to make the most of both. When my kids were younger, we went to the park or threw a ball around outdoors on my good days. On the days I didn’t feel I could get out of bed; the kids and I colored or watched movies—either way memories were still made.
5) Not everyone believes science
People understand the effects of cancer because they can generally see them. The same is not always true of lupus. People generally cannot look at a lupus patient and go, yep, that one there has got lupus.
From the outside looking in, people have a hard time understanding you are in fact sick. Chronically.
It’s our fault really because we make it look so easy enduring anything medically horrible a human being can experience with high tolerance. This is why when people hear how you are sick, or all the times you were hospitalized because you legit almost died, they tend to look at you with the blessed naivety of the healthy and say, “But you don’t look sick. You can’t be as sick as all that.” But you are, so instead of expending energy trying to “prove” you don’t feel well, concentrate on normalizing smiling and walking away. You don’t need that stress!
6) Don’t be myopic!
Yes, lupus is challenging and it pretty much all sucks, BUT… we are not the only ones dealing with chronic illness, or struggles in life for that matter, so even when others can’t find it within themselves to show empathy, be that person. We all need more people who genuinely care about others—don’t let lupus suck the compassion out of you too!
7) Parenting is not for the weak
It doesn’t matter if you are chronically ill or healthy, parenting is not for the faint of heart. Some days, some moments, might have you second guessing your decision, but nothing on earth compares to your child bringing you a flower they picked just for you or watching your child go into the grocery store because you can’t and come out with not one, but two pre-cut packs of watermelon because it’s all mom can eat when she is sick. Life is often harder than it needs to be, but it is in these precious moments we discover why it all matters.