When to Tell Your Child You Have Lupus?

Hi, everyone. I’m a 43 year old mother of an 8 year old boy. I was diagnosed with SLE, fibromyalgia, Sjögren’s, and other autoimmune issues when I was 26. I would say I have a moderate to occasional severe case of lupus. What’s really starting to weigh on me is my son is beginning to ask questions like, “Mommy, why are you in bed all the time?” Or I’ll have to miss one of his school performances because I’m feeling so poorly and have to make up an excuse as to why I couldn’t attend. I don’t want to lie to him. I want to tell him what is age appropriate. He’s an intelligent and observant child. I’m just not sure what to say. Has anyone had to tell your youngsters about your disease(s)? How do you go about it without making them take on part of the burden?

I keep hoping and praying I get better before I have to tell him, but I seem to be getting worse. I just don’t know what to do. Any feedback would be much appreciated. Thank you, Kim

Hi Kim! I don’t know that there is any easy way to tell them without them taking on the burden. I felt a connection with you and wanted to reach out because I am about 40 with 10 year old twin boys and an 18 year old son and I have the same diseases you do. Whether we tell them or not, or only explain a little the fact of the bitter truth is these diseases not only make us sick but rob our children of normal parts of childhood-having their parents be there like other kids with healthy parents. Trust me-they notice, whether you tell them or not. They may try to understand in their limited little kid way, but it makes them hurt and angry. I miss my son baseball practices and games and any other outdoor activity that is on tight bleach type seating where I can’t spread out a huge umbrella, or like with this June heat and sun driving out to the fields and being out in it throws my into a huge flare. It makes them really angry sometimes, or last week when I had a terrible flare and was bed ridden for 3 days and my youngest kept begging me to go play catch in the back yard and I couldn’t even get mysel dressed let alone play catch an he got angry- why can’t you be like other mom’s why do you have to be sick in bed all the time! I just want you to play with me! Trust me whether we tell them about our disease or not, no one knows more about how much our limitations are on regular life than our children.

Wow, Heather. That was very powerful. Thank you for reaching out. I really appreciate. I feel for you and completely understand what you’re going through. It just breaks my heart to see the disappointment on my son’s face when I can’t do things with him as you’ve described. It really sucks! Thank you, again, for taking the time to write your comment.

I describe this illness in easy to understand 'my body is allergic to itself' And then explain when it is acting up it makes you feel really bad- very tired, achy etc and you have to rest so the 'allergic reaction' can die down He may be able to associate with some of his friends allergies and begin to comprehend Kids understand more than you think but this way it is not presented in a frightening way such as "I could die" or other equally ominous statements

Each child and family situation is different. That being said, I feel it is important to communicate with our children about what is going on. Just as I can't imagine keeping my husband in the dark concerning what is going on with my health, I can't fathom leaving my son in the dark about it either. He's been with me on this journey of discovery, just like my husband has. He may not know as much about it, and may not be as in-tune with me as my husband is, but he knows very well what's going on.

In fact, it was HIS reactions to my pain that really helped push me to start this journey in the first place. He knew, and still knows, that sometimes touching momma hurts her. He's thirteen now, but I really started hurting about four years ago or so. So I kept him mostly up to date on how things were going... I didn't over-educate him, at least as best as I could, so that he wouldn't be frightened, but he was old enough when I got my diagnosis this year that I did tell him the risk of dying. I made sure he understood that we were working against such a thing, and that it wasn't something we thought likely to happen, but I felt it unfair to expect him to possibly face my death without having some sort of warning before it got scary, if that makes any sense.

I have been very blessed in that he has been understanding and loving the whole way. He is super gentle when he knows I'm hurting, he willingly fetches things for me so I don't have to go up and down the stairs, he carries things for me so I don't have to haul them up and down those same stairs. And when I sometimes get super cranky at him and then have to apologize because my pain crept up on me and made me snarly, he pretty much always backs down from his huffy teenage reaction and is forgiving and understanding.

It is my belief that if children know WHY things are this way, why their mother (or father!) can't get up to play, or sleeps a lot, or whatever, that they will learn and adapt. But, as I began with, each family and each child is different, and I know it isn't always possible to have things work quite so well as they did in theory. ::hugs:: Hang in there. Let your kiddo in on your struggle, and you'd be surprised at the kind of support someone so young can offer!

My mum was diagnosed with Fibro, Chronic Fatigue and Spinal Arthritis when she was 40 and I was 4. She retired (Law clerk) and became a stay at home mum. My childhood was different from my friends in that my mum didn't go to work and couldn't participate in many school things (selling raffle tickets, any candles or flowers- she is allergic to most "chemical" smells) but my childhood was great because I knew what was going on and our bond became stronger because of it.

From day 1, mum was 100% honest with me in a way that I could understand as a child. I learned more as I grew up (I'm now 18) but what I knew made it easier to understand what mum was going through. I have watched my mum go through Fibro flares that have made her muscles knot to the point she couldn't get out of bed, and I've also seen her run around the backyard with our dog seemingly without a care in the world.

My advice would be to begin by explaining the basics to your son. Poobie's advice is a great place to start for an 8 year old. Him understanding that what's happening is not his fault will give him peace of mind that he doesn't even know about! (I went through fazes at the beginning thinking I was a bad child for making my mum tired). Have conversations with him about how you are feeling on a particular day or if you have a muscle knot that prevents you from doing something let him feel it (lightly) and teach him "gentle hugs". Knowing that mummy is sick but will be "okay" is a great relief to most kids.

One of the things that made my mum and I so close was our after-school talks. I'm not sure if you are still working but mum retired when she was 40. Everyday after school I would come home, make her a cup of tea (in the microwave) and we would talk about my day for anywhere from 15 minutes to 2 hours, rotating between sitting on her bed (her laying down) or the couch depending on how she was feeling. This kind of interaction is so valuable because it sets a routine that can be altered if you are having a good day or a bad day. Seeing you in whatever state you are in also allows your son to ask questions about what you are experiencing and gives you the chance to help him understand. I don't think childhood is defined by what a parent can do with their child but it is about being present with your child.

With today's technology, you don't need to miss any performances your son has. Kids know when their parents aren't at a performance and it hurts if they don't know why. If you are too poorly to make it, have a mother of one of your son's friends film the event and watch the tape back with your son later. This will allow him to give you the highlights and for you to encourage whatever he is doing (school recitals, baseball games, plays). One of my favourite things to do as a kid was showing my mum when I did something, whether it was a drawing or a dance recital.

As a kid, I did take on more roles than most of my friends, not because I necessarily had to, but because I wanted to. While not all kids are the same, help will come in age-appropriate steps. For me I started making tea in the microwave at 5, on the stove at 8 and in a kettle (mum finally bought one) at 12. My steeping and milk skills evolved over the years as I grew up.

As I went through my pre-teen years, I did get angry sometimes that I couldn't go to certain things because mum couldn't drive that day or couldn't take me. I soon realised when mum told me she was sorry but she couldn't change what was happening that I needed to think of her feelings as well.

Your journey is something that your son should be involved in. It removes some of the barriers these illnesses cause by bringing you together. While some people think it robs them of a "normal" childhood, I personally think my unique childhood was awesome! I am closer to my mum than most of my friends are with their parents and steps ahead in life skills (I was doing grocery shopping at 14 and moved across the world for uni at 16).

I hope my perspective as a child of a parent with these disorders help. It may seem daunting now but it will get easier and you remember to "Just keep swimming" :)

I would say that you have to be honest with him. Kids are smarter than we think , in a way he already know mommy is not okay. I would consider taking him to your rheumy apt in case he has questions of the disease itself. Most important I think you make him feel important and needed in your life . Like remember mommy to take her medication .

AusCanGirl, thank you SO much for your perspective and the time you took to share. It’s made a great difference in my thinking of how I’m going to approach this. Thank you. And my prayers for your mother and family.

It’s difficult with younger kids. I was diagnosed 4 years ago and my daughter was 15, she went with me to the Dr I did not think I had lupus. She found out later that day, at 15 she was concerned I would die right away and started go ogling the illness so I had to educate her on lupus. If I could do it over I would not have brought her to the appt. But ironically, knowing I have lupus has brought our family closer and more people are looking out for me and caring. I say tell your 8 year old in stages don’t tell him the name first tell him the symptoms then as he gets older tell hhim more. This is a life long process.

Hi i was diagnosised at 8 & I’m 41. I told my son when he was 6 i did some role play with his toys & then i made an appointment with my Rheumy who allowed him to ask questions & took the time to explain on his level. As time has passed i’ve gotten worse but we discuss the stages as they come. He understands my absence & my bed ridden days but whats best is he knows he can ask & i’ll be honest. He’s 13 now & the one thing i do is always propel him to be a kid & enjoy having fun. We have a movie night that we both look forward to you’ll find away & he’ll love you just because you’re mommy. God bless you & your family.

I’m just so grateful for all the wonderful feedback. Thank you.

This is difficult...each child is so different. I think when they ask it is a good idea to tell him the truth...but a little at a time.

Same advice I give when going to a new doctor...least they get overwhelmed. There may be some books out that are age appropriate to help tell children about chronic illnesses. I think the more calm you are when you tell him the more easily he will accept the news. Good luck.

Kim…thank you so much for the post and thank you to all of the responses…my 7 yr.Old daughter was asking me questions tonight about my SLE and what it is. My son is 4 and knows something is wrong too. What are some ways you have all explained this on an elementary school level? Nicole…how did your Dr. explain it? I like the body being allergic to itself explanation. It certainly affects kids and us parents who feel bad that we can’t do the things the way we want to with our children…and/or as much as we’d like to.

For slightly older children, ~7 and up, there was a story my mum used to help me understand the tiredness aspect of her conditions, its called the spoons story. You can make it interactive and tailor it to specifically to SLE, Fibro etc and for different ages.

Basically, the story goes, You get a certain number of spoons for your day. Each spoon represents an activity. 1 spoon can let you make breakfast, another spoon and you make lunch. Sometime you get to the end of the day and you get a choice of making dinner and spending time with family or doing something else (i.e. the laundry or going to the movies). Running out of spoons makes you run out of energy and thats when mum has to lay down.

I read this story when I was about 10 and it ends with the decision of how to make dinner and go to bed with one spoon. That bit is a little confronting for a kid but explaining the lack of energy or maybe why mum/dad/whoever has the illness can't do a chore or go somewhere with something tangible for spoons is very helpful.

Here is the link for the story


That's a good idea, AusCan! Perhaps even use "spoons" as a code word, parent to child, to communicate the problem (not feeling good) in a light-hearted way that isn't scary. Plus, I don't know a child who doesn't like secret words or signals, and being included in on that sort of secret word (which admittedly most normal folks totally wouldn't understand) might help too. It makes our child(ren) feel special and included without also scaring them.

I think my son is kind of avoiding getting to know Lupus too much better than he already does, now that I think about it. He's been staunchly avoiding reading about Spoon Theory. Perhaps he scared himself by looking it up on his own, and now would rather just hear it from me, if he needs to know whatever. I can't much blame him on that, really. I'm still learning how to deal with it, so I can only imagine his struggle to do the same, but from the outside. Thank you for the thread about including our children. It's giving me food for thought on my own kiddo. It can be so easy to get caught up in how Lupus makes ME feel, I don't always stop to think about how it makes him feel. This bears some mulling so I can continue to try and help him deal with it.

There are a couple children’s books about lupus on amazon,it’s been along time sense I’ve had to address this issue,I was as forth comming as I could be through the years and my daughter did her thesis in college on systemic lupus and got an A…I was very proud that she had really took the time to educate herself on my illnesses…I think she actually knows more about it than I do…

Wow. You guys are amazing. I really feel supported as I take in all your information. I’m processing everything at the moment. If I may add an aside: it’s rare that I get to play with my son and yesterday we played a simple Pokemon card game together AND I was also able to make dinner. In my eyes, that’s a great day. He was so happy. I hope to have more days like this with him.

Hey Kim! I have four kids ages 21,18,10,8 yrs old. I completely understand your worries about telling your son. My older children knew when I found out in 2010 but previous to that I was just diagnosed with RA in 2006. When meds weren’t helping me they did further testing and found out I also had lupus, sjogrens, RA, and fibromyalgia. My heart goes out to you because there’s nothing more painful for a mother to have to lay in bed while there child is having a school event and you can’t attend due to feeling so bad. I finally told my little kids last year and I feel so much better now. I think of course your son will worry about you but let him know mommy will be ok your not going anywhere but you feel sick sometimes and you can’t help it. You can reveal some info about how you feel whatever makes you comfortable so that he knows you love him very much and want to be there but you just can’t. I will tell my kids make sure you take lots of pics and I will be as involved as I can without being there. I will get really excited when they get home and let them tell me all about there event. I do cry though it is heart breaking but I try to be strong in front of my kids because I believe that gives the kids strength too. You will feel a sense of relief telling your baby about what your going through and he will probably want to start helping mommy a little more when you are having bad flares. Kids are so much smarter than we give them creditor for sometimes. Our kids know when were sick my kids can tell by the look on my face when I’m not feeling well. I encourage you to open up and let him know. Even if you get better a flare up can happen again so this way he will already be informed. Best of luck to you I know this is hard and I’m sending prayers your way. You sound like a wonderful mommy we all want to be supermom and it’s hard to deal with this. Take care and let us know how your doing!

Thank you, Lili. Seems you, like the other moms, really understand what I’m going through. Much appreciated! :slight_smile:

Hi Kim

I was diagnosed when I had 4 mid term miscarriages so about a year before my son was born. I found as he grew he questioned more what was going on with my health issues. he is now almost 22 and a very nice young man ( if I don't say so myself :) ) What seemed to work best was to be as honest as possible and only answer the question he had at the time of the conversation. If something else occurred to him after we talked he would simply come back. I treated my disability as a matter of fact thing mommy has lupus and that sometimes makes me too (tired, sore, fill in whatever applies) to go for a walk with you and Daddy maybe when you get back we could (play a board game or cards or whatever sedentary activity you like ) I hope that helps being a good parent is hard having Lupus as part of the mix can make things even trickier God Bless