WAIT… LUPUS CAN DO THAT?™
An AZ Butterfly Warriors Educational Series
#05 PARENTHOOD
Becoming a parent changes your life.
Then sometimes lupus changes it again.
It can change how you play, how long you stay awake and even how your child is able to hug you.
Wait… lupus can affect how someone parents?
Yes.
😳THE WAIT… WHAT?
My children were eight and three years old when I was diagnosed.
In a matter of weeks, we went from wrestling, playing and being physically silly together to me being in so much pain that it hurt simply to hug them.
Nothing—and no one—prepares you for how quickly life can change.
How do you explain to a three-year-old that Mommy wants the hug, but her body cannot handle it right now?
They were too young to understand lupus. They only understood what had changed.
Mommy used to play.
Mommy used to wrestle.
Mommy used to say yes.
Now Mommy was saying, “Not right now,” “Please be careful,” or “That hurts.”
The pain was only part of it. My pain medication could leave me sleeping for as many as 18 hours a day.
At the time, I could not imagine how I was supposed to be an effective parent when I could barely stay awake long enough to participate in my children’s lives.
Then I heard the words that broke my heart:
“Mommy is always sleeping.”
They were not trying to hurt me. They were telling the truth as they understood it.
I knew the medication and the sleep were not choices. But knowing that did not quiet the guilt. I felt like pieces of their childhood were happening while I was asleep—and like the mother they knew had disappeared almost overnight.
Parenthood already comes with guilt. Lupus pulled up a chair and made itself comfortable.
🤔 BUT WHY?
Lupus can bring pain, fatigue and symptoms that change over time. Flares may also be unpredictable. That unpredictability does not stop because someone has children who need breakfast, homework help, rides, attention and approximately 47 answers to “Why?”
Young children may not understand what lupus is. They understand what they can see.
They notice that Mom or Dad is sleeping.
They notice when the park becomes a couch day.
They notice when a parent says no to something that used to be normal.
A child can feel disappointed without being unkind. A parent can be doing everything physically possible and still feel as if it is not enough.
Both things can be true.
The male perspective belongs here too. A father with lupus may feel pressure to remain the strong, active parent or provider. He may worry that asking for help makes him appear unreliable. If he used to wrestle, coach, repair everything or carry everybody, losing those abilities—even temporarily—can hit his identity as hard as it hits his body.
The activity may change, but the love did not.
👀 WHAT YOU MAY NOT SEE
🦋 The parent may be awake but using every bit of energy just to remain present.
💜 Saying “not today” may hurt the parent as much as it disappoints the child.
🦋 Medication side effects may take away hours the parent desperately wants back.
💜 The parent may grieve the version of themselves their children remember.
🦋 Asking another adult to take over may bring relief and guilt at the same time.
💜 The parent may be learning a completely new way to show love while fearing it will not feel like enough.
💜 WARRIOR TO WORLD
The non-lupus parent or caregiver is part of this story too.
They may be handling more meals, appointments, school activities or bedtime routines.
They may feel protective, tired, scared or frustrated—and then feel guilty for having those feelings.
The Warrior may watch someone else do what they once did and feel grateful, replaced and heartbroken all at once.
That does not make either person the enemy. It means the family is carrying something heavy.
The Lupus Foundation of America offers support resources for people with lupus, caregivers and parents because these experiences affect the whole family.
Communication will not make the pain disappear, but it can keep children from blaming themselves and keep adults from quietly building resentment.
It can sound simple and imperfect:
“My body needs extra rest today. You did not cause it.”
“I am not upset with you. I am hurting.”
“I can’t wrestle today, but I still want to spend time with you.”
“Today needs to be a couch day. What can we do together from here?”
“I need help with bedtime tonight.”
“Please don’t make decisions for me. Ask what I can manage first.”
Parenting from the couch is still parenting.
Listening is parenting.
Giving advice from underneath a blanket is definitely parenting.
But saying that does not erase the grief. Sometimes the parent still wants to get on the floor, run through the park or stay awake through the entire movie.
We can honor the parenting that is happening without pretending the losses do not hurt.
🦋 THE BUTTERFLY BOTTOM LINE
Lupus may change how a parent shows up, but it does not decide how deeply that parent loves.
A child’s disappointment is not proof that the parent failed.
A co-parent needing rest is not proof that they do not care.
A father asking for help is not less of a father.
A mother sleeping because her body or medication demands it is not choosing sleep over her children.
Families may need new routines, clearer words and different ways of spending time together. Love may have to change shape.
Different does not mean absent.
And different does not mean less.
NOW YOU KNOW. 🦋
To the Warrior raising children while managing lupus: you are allowed to grieve what changed without calling yourself a failure.
To the co-parent or caregiver: helping with the physical load matters, but so does remembering that the Warrior is still a parent—not another child to manage.
To the children who grew up with a lupus Warrior: your disappointment was real. So was your parent’s love.
What did the children see?
What was the parent carrying silently?
And how can families talk about the difference between “I don’t want to” and “I physically can’t today”?
💬Yeah. Let’s talk about it.
Real conversations. Stronger communities. Brighter tomorrows.
— AZ Butterfly Warriors
WAIT… LUPUS CAN DO THAT?™ is an AZ Butterfly Warriors educational series that goes Beyond the Visible to explore the surprising, misunderstood and often unseen ways lupus can affect the body and everyday life—explained in language everyone can understand.
SOURCES & FURTHER READING
This content is provided for lupus education and awareness. It is not medical advice, diagnosis, treatment or mental-health advice. Lupus affects each person differently. Please consult a qualified healthcare professional about individual health concerns.
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