Talking to your kids about Lupus

Likely one of the most boring titles EVER…but totally necessary and, believe me, a skill set in a parenting toolbox that you never thought you might need.

As a mother of five, living with systemic lupus erythematosus…the topic is a hot one among my household.

I had found this article:

You have lupus and you don’t understand it — How can you explain it to your children? By Robert H. Phillips, Ph.D.

Not going to lie…I think it kind of superficially sucks lacks in the realities and comes across as a bit…je ne sais quoi…unrealistic?

For example:

“Resulting discussions, if handled properly, will not only be helpful for your children, you’ll enjoy them.”

No. No, I haven’t enjoyed them. Ever. Any conversation means I’m broken and feel like I carry the weight of the world, but less Atlas muscle-y and more StayPuff Marshmallow-y.

Also, because not only can I NOT give reassurances that I will be okay…I think it’s ridiculously deceptive to do so.

Depth

How much do you tell your kids? Well, the obvious start is to assess their comprehension levels based on their age. Can you talk about some of the medical terms, or do you need to superficially cover the minor details?

My 20 year old son knows that Lupus is a chronic systemic, inflammatory autoimmune disease where my system attacks not just infection but the good, healthy, necessary tissue cells throughout my body to, y’know, live. He knows that my chemotherapy treatment targets B-cells and makes me feel like a big bag of smashed assholes. That’s enough for him.

My 8 year old twin boys know that Lupus makes my joints very painful, my skin fall off, and that Lupus is hurting  my heart and kidneys. They understand that my body feels a lot of pain, a lot of the time, and that’s why Mommy cries. A lot.

I vary my responses to my 10 year old daughter and 16 year old son, accordingly.

I do agree, however, with the concept of determining and telling your children what it is that they’re wanting to know.

Hence –

Want

I think it’s also important to address what information your children want to hear, if any at all. This being said, if your condition is such that you’re in the throes of medical treatments, can’t function or participate in daily activities…you need to have a conversation.

Do I go into the Eeyore or the Whine-1-1? I sure as shit, do not.

If I can’t leave the couch, my kids are told that I’m having a bad flareup and that I would prefer if we watch a movie, or play a game that we can lay out on the cushion. I teach them to compromise when my disease is being the proverbial asshat.

I absolutely do not agree with Dr. Phillips’ condition that you must reassure your children that you are not going to die. We ALL die. What I feel has been best received is that, knowing my disease is affecting my heart and kidneys to the extent that it is, having told my children that I have a possible temporary ”head start.”

I reassure them that my treatments could change my disease for the better and that I’m trying really hard to fight Lupus by attending my appointments for the best health care possible.

Reality

Sometimes, you must have those other kinds of conversations. The kind where your children know your prognosis isn’t stellar. Children aren’t stupid. They know. They know when a bag of chips is being opened three rooms away, and they know when Mommy is fighting a seemingly impossible fight. The kind where you talk about reassuring them that they will be well cared for IF something were to not change for the better, and cared for by whom. Having conversations about connections with spiritual guides and allowing them to…*gasp*…be a part of the conversation. Proactive involvement.

[enter collective guffaws from psychological professionals everywhere, stage left]

Thing is this: My daughter knows where my health stands. She understands that we have some kinds of conversations because, just like life insurance or a fire alarm, we need to have plans and hope we never have to use them.

We all die.

In doing so, my children are allowed to process their thoughts and feelings to the best of their ability. Sometimes, they can manage.

Other times, they cannot. I feel Dr. Phillips is missing out on a really good opportunity to educate parents in the inevitable:

Know your resources.

My daughter had a breakdown at school the other day because of her knowledge of my mortality. She knows it is a very real possibility if we can’t cut the systemic inflammation, coupled with the constrictive pericarditis that is wrapping itself around my heart and the fluid sitting in the pleurisy around my lungs.

What transpired is what parents with chronic disease need to give a few ponders about: The school called and offered my children to see and talk to one of the school’s social workers and psychologist.

I’m not a psychologist.

I could read and re-read All of the Things and I still won’t have the toolbox to help my children deal and manage the very real and the very scary Things.

Do I ever think I shouldn’t have told them?

One day my children will be much older and they will know, inevitably, just how sick I was*. (*gods forbid)

Trust.

Truth.

I still manage the amount of the information I divulge…but I most certainly welcome a whole conversation. I will not save them nor bubble wrap them from the realities of life.

We all die.

So, gods forbid the treatments perform less-than-stellar, I take comfort, as do my children, in the plans we’ve made together. They would be in the throes of deep grief, but I will not have added the fear of the unknown of the Everything on top of it.

In the meantime, I wholeheartedly agree that parents with chronic illness think about ”quality”, not ”quantity”…but I verily believe you can have both, if you’re inclined to be creative in your definition of each.

Modify. Compromise. Adapt.

THIS is how great feelings of closeness can result. My children know they can absolutely talk to me about anything and any part of Lupus and my treatments, thoughts or feelings.

How do you talk to your children about chronic disease? Are you flabbergasted at my approach or are you inclined to involve your children in the process of planning All the Things? Let me know in the comments.

Mother of many masks...

Mother of many masks…

4 responses to “Talking to your kids about Lupus

  1. Right in the feels. I’m sorry you have to go through telling them. I’m just starting the path of chronic illness. I don’t know how I’ll talk to roots in the future.much love and hope.

    • I do the best that I can with what I’ve been given…but the Cosmos could certainly give me a piece of chocolate cake. 😉 I hope, in time, you can find the right words for you and Roots…always thinking of you all. <3

  2. HUGS! Had to say that first…

    If I had to have those conversations I would do exactly what you are doing. My mother handled things that way. The hard conversations were had and we had the chance to savour every moment together before she passed. It was hard, we were grieving but we knew all of the arrangements and details were covered.

    You are doing an amazing job at parenting in a horrific situation. I am proud to call you my friend.

    • I really appreciate you sharing your personal experience with the same. I find I am laden with guilt some days, questioning, but I don’t think I’ve ever questioned my decision to make the kids a part of ALL conversation. I think it’s because I’ve been gifted with judging where they’re at, how much to say at any time, etc. I’ve never Eeyore’d a single part of it. They see me Try and they see me Do. Thank you for such kind words xox

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