Lupus Is Going Down

Helping You Live Well With Lupus

talking to your kids about autoimmune disease

Talking to your kids about your lupus can be rough. Yet, it’s necessary. Read how the “I have lupus now” with your kids can be easier and comforting.

But, before I get into the how’s and why’s of talking to your kids about your lupus diagnosis, I have a confession to make.

When I began experiencing disease activity after a long period of none, I didn’t handle it well.

Disappearing into a deep pit of depression is more like it. And, I tried to hide it from those around me, including my two daughters. Basically, I isolated myself from everyone.

And, that led to me almost losing any kind of relationship with girls.

Before, it came to that I experienced a wake-up call and struggled my back to a healthy relationship with them.

So, this post springs from my failures and successes(after I fixed myself and how address my disease ). Honestly, I write this because I don’t want anyone to ever go through the pain I put my daughters and myself through.

By sharing what I’ve been through, maybe I can help.

So, how do you go about telling your kids, “I have lupus now”?

Be Honest

Start With Yourself

First of all, you have to be honest with yourself and with others. You have an autoimmune disease, and things are going to be honest with yourselfchange(Source ).

Really, I think that’s where my problem started. I was in denial. Although, it wasn’t denial of being diagnosed. No, I had dealt with that 23 years ago when I was 14.

In short, it was the fact that I had a long run of no symptoms. Then, suddenly, symptoms returned with a vengeance. In fact, I suffered a stroke five years ago.

And, instead of coping with it, I denied it. Consequently, things got worse. I was distant. My fatigue made me want to sleep all the time.

So, I didn’t spend time with my kids as much. Also, I tried to hide my pain from them. For example, when I get out of bed I tried my best to not limp in front of them.

Tell Them The Truth

But, that was pointless. In fact, they knew something was wrong. And that’s the point. Kids know when something isn’t right with mom or dad.

So, what was the result of denying the truth that was evident to everyone but myself?

Not only did our relationship crumble, it almost exploded. Yeah, my kids didn’t want to be around me anymore. They quit talking to me. Even more important, they began to suffer emotionally and psychologically.

I had really messed up. Unfortunately, I didn’t realize the damage I had done until my oldest daughter started suffering from anxiety herself.

And the moment I realized the damage I was causing, I had to tell them the truth.

When I finally opened up, this is what I shared with them:

  • What was going on in my body(For more about my experience with lupus- read my post Can Men Have Lupus? )
  • How it made me feel
  • That things would change- lifestyle habits like eating and exercise
  • Sometimes I’m going to have to say no or maybe depending on my energy level

Show Them Your Acceptance

accepting your lupus

Along with the other information, you need to convey to your kids that you accept your lupus. It’s a reality. And, there’s no cure.

While expressing this to them, also be sure to express that you’re going to be okay. Yes, you have a disease, but it’s not going to get you down.

For me, I had to tell them that I was going to let it defeat me any longer. The damage was already done.

All I could do was cope better from that point on. And, I shared that with them.

I’m not going to lie. It was a long, hard road back to a healthy relationship with my girls. But, it has been worth the effort. I can say now that our relationship has been stronger than it ever has been.

Use Terms They Can Understand

Along with being honest, you need to use terms they can understand.

Be honest- All those medical terms associated with lupus can be overwhelming. To tell the truth, I struggled with understanding it all when I first heard it. And, I’m sure you felt the same way.

systemic lupus erythematosus

For instance, even Systemic Lupus Erythematosus is a mouthful. Most of the time, phrases like anti-nuclear antibodies, antimalarial, and immunosuppressants sounds like they belong in sci-fi and not medicine

Fortunately, my daughters are teenagers. This made it easier. I can only imagine what it would be like to talk about lupus to younger children.

But, you need to, so you have to find a way to make it not sound so scary.

For example, you can explain how the immune system is the part of the body that keeps bad things from making you sick. But, with lupus, your immune system gets confused and attacks your own body. So, you get sick.

Also, you could use an analogy. Incidentally, I use the analogy of Star Wars(because the new movies just came out and because we’re Star Wars geeks). Specifically, I compare lupus to Jedi knights attacking the Republic instead of the Empire. It’s terms they understand.

Finally, remember the KISS principle. KISS- Keep it simple, Simon. Don’t go into more details than you have to.

Give Them A Voice

Another great point to consider is that you’re having a conversation. And, that goes both ways. In other words, let them have a chance to discuss and ask questions.

If not, it just comes across as a lecture. And, no one likes those. I know I do. And, I used to give lectures for a living.

As far as asking questions, the most probable question they’ll ask is if you’re going to die.

Think about it for a moment. You’re sick often. You probably go to the doctor quite a bit. And, if you’ve had any hospitalizations, then to a child’s mind, this equates with dying.

Along with the death question, they may ask you if it’s cancer. Answering their questions provides a great opportunity to inform them. Also, it will calm their fears.

As for my daughters, since they’re teenagers, their other questions were self-focused. In other words, they wanted to know how my disease would affect them.

In addition to letting them ask questions, let them vent. Yes, I’m suggesting you let them raise their voice and get upset. Since their reality has been challenged, they need to process this change.

Once again, this is an excellent opportunity to bring healing to your relationship with your kids. As for my daughters, there was much hurt and anger to work through. And, that first conversation was the beginning.

One last tip- Let them control the conversation. Yes, it’s your disease. But, this “I have lupus now” conversation is really about them.

Reassure Them

Ultimately, your kids are just wanting to know that they are going to be okay. Yes, they’re concerned about you. But, deep down, they just want to know they’re going to be safe.

So, you need to reassure them. Sure, you are in pain. You have a disease. But, that’s okay. You’re okay.

It’s not going to change who you are. And, you have to mean it. No matter who bad it gets, you have to stay positive and be there for them. Learn from my mistake.

reassure them of your love

Moreover, you need to reassure them that you’re still going to be there for them. You’re still their parent. That hasn’t changed.

Other things may change. You may have to quit your job. Hopefully, not. Money may get tight. Medical bills do add up.

But, your love for them will never change.

When it was all said and done, that’s all my daughters wanted to know. That, and why I was sick so much. Oh, yeah, they also wanted to know why I didn’t tell them sooner so they could help. Because, that’s the kind of kids I have.

They just wanted to make sure we’re going to make it through this.

So, now, I reassure them every chance I get.

The “I have lupus now” Can Be a Healing Moment

As you can see, our “I have lupus now” conversation was exactly what my relationship with daughters needed. Actually, it was the last straw for them, and a last ditch effort for me.

Just think- If I had talked to them sooner, I could’ve prevented so much heartache for them and myself.

Don’t get me wrong. I’m not bad parent. But, I was so lost in my own pain and brain fog, I just didn’t think about how I was affecting them. Add depression, and the situation just spiraled out of control.

And, it was almost too late. Thankfully, it wasn’t.

Today, we have a healthy relationship. My kids are daily check on me. They also do more to help out around the house.

And, when I have the energy, we make trips to the mall for shopping therapy. They say it’s good for me. Personally, I think they’re spoiled. But, that’s all on me.

You see, I want to spend quality time with my kids when I can’t spend quantity of time. So, I invest my time in things they love, shopping being on the top of the list.

And, we wouldn’t be at this point today if I wouldn’t have come out of my funk and had that conversation.

It can be a healing moment. It was for me. It can be for you.

I hope this post helped. If it did, please share it socially. Helping each other is the lupus warrior way.

Wishing you better days ahead,


I have lupus now- telling your kids

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