Sunday, March 11, 2012

Lupus Patient 2.0

Does this look like a child who was scarred for life?

I am quite unusual for a lupus patient, in that I am not only myself a patient, but the daughter of another lupus patient. While autoimmune diseases run in families, only 5% of the children of lupus patients will also develop lupus. So I’m one of those lucky few. I find it to be interesting to be in this position, because it gives me a chance to interact with, and reassure, lupus patients who are worried about the impact of their disease on their children. 

I often get asked questions and/or for advice about raising a child as a sick parent. I’ve done a lot of thinking about it, and seen how various other sick parents interact with their children. It has been a work in progress for a while. But for now, at least, I have come up with a list that is partly from my own experiences, and partly from those of people around me. I myself do not have children, and I know the most irritating thing in the world is for someone without children to tell parents how to raise their kids. That is not my intent here. Instead, I offer this list merely as observations and advice coming from someone who grew up with a lupus patient parent. 

I should also mention that this list is in no way meant to suggest that my parents did all of these things wrong. Many of the things I suggest I know about simply because my parents did them really well. So do not take this as implicit criticism of my own experiences.

1)    Kids aren’t dumb. Well, on the unintentionally suicidal behavior front… kids are very dumb. But what I really mean is that kids pick up more than you might think. Because of this, hiding your illness is simply not an option. Children will figure out that something’s wrong; it’s much better to tell them than to let them wonder what’s going on.
2)     Be open about your health. This is closely related to the previous comment because I think this is very important. Lupus is, by definition, uncertain and changing. But as these changes take place, I would suggest that you try to help your children understand them. The unknown is almost always scarier then a known problem. To the best of your ability to explain, and your children’s ability to understand, let them know if things are drastically changing in any way. Also, be honest with a child who is scared about developing lupus him or herself. Tell them that it's possible, but not likely.
3)     Be honest with yourself about your own limitations. If you have a very bad memory, as so many of us do, do something about it. A child whom you routinely forget to pick up from school at the proper time will not be able to help taking it personally. I myself am a fan of Post-it notes, which is where I keep my brain these days, but smart phones with alarms, iPads with calendars, and any other means of reminding oneself of time commitments should be used. Kids know these tools exist, and frankly will  wonder why you don’t bother to use them. Fair? Maybe not, but that’s the way kids are.
4)    Do not worry unduly about the fact that you cannot be a “normal” parent. As I said earlier, kids are pretty perceptive at some levels. They can tell when you honestly cannot do something. They may be disappointed, but it will not scar them for life. As an example, my mother is photosensitive. This means that she could never have taught me how to ride a bike. So, over the summer we had a babysitter that would come for a couple hours every day; she taught us how to ride bikes instead. I never felt that this was in anyway inferior to having my mom teach me. In fact I think it worked out great, because I adored that babysitter, and keep in touch with her to this day.
5)    Do not ever blame something that has nothing to do with lupus on lupus. Kids won’t buy it.
6)    If you have a co-parent, try to arrange with him or her how to best support your kids. Maybe you will try to attend Susie’s orchestra concerts, while your partner will attend her baseball games. That keeps you out of the sun, but lets the hypothetical Susie know that both parents care for, and support her.
7)    If you cannot do something to support your child because of your illness, be honest and explain that fact. It’s much better for the child to be annoyed at Lupus than to think you don’t care.
8)    Ask for help. You don’t have to do this alone. Ask a friend to come over and help, hire a babysitter if you can, etc. Even if you don’t have the ability to teach your child to ride a bike doesn’t mean you can’t help it happen anyway, as my own experience shows. And I honestly feel blessed that I had a "second" mom in my Grandmother Hyde; she was always there for me, and I developed a closer relationship with her than I might have in other circumstances. There is no downside for kids to know that multiple people care for them.
9)    Apologize. There will be times when you are grouchy, in pain, and snappish. There will be times when you take this out on your family. That’s human nature. Everybody does it, sick or not. But do try to apologize if you realize that you’ve taken out your frustration with your disease on your child. It will make a difference.
10)  Just do the best you can. As I keep saying, children really can tell when you care about them. And they really can tell when you would like to be able to do more with them than you are physically able. I would personally suggest that having children see a therapist from time to time would be a great idea. Just as a way for the child to have another adult with whom (s)he can talk about the scariness of lupus and impact it has on people’s lives. But in any case kids know when you’re trying, and they will appreciate it. Your physical inabilities really aren't going to damage your children for life.

      The bottom line is that  I think parents with lupus just need to calm down, and realize that, as long as they treat their kids well, it'll all be ok in the end.


  1. Your mom didn't just have lupus. There was the deafness issue, and she has added more over the years (automobile accident survivor) etc. And yet all of you have turned out pretty decent. I know that lupus is something your mother would rather not have shared with you (even though sharing IS good in many cases). But you definitely turned out better than if you had had a perfectly healthy mother who was simply bored with kids and left you to be raised by the television set. Love and honesty can get you through a lot.

    1. I don't share information about people without their permission. I've asked my mother for permission in the past to talk about her autoimmune diseases, but not the other issues. (Just to explain why I was selective).

      Like I say, I think good parents are good parents, and bad parents are bad parents, and physical disease has very little to do with with which kind of parents people are. It's the choices they make that matter, not the things they cannot choose.

  2. Thank you, Sam. You turned eight about the same time I got my diagnosis; when the doctor said lupus, my reaction was, What's that? I'd never heard of it.

    What you may not know is that your old kindergarten teacher pulled me aside one day about a half dozen years into it and told me that my kids were the most compassionate ones in that school and she wanted me to know that. Those times I snapped and then apologized because I was just too tired or overwhelmed that day? You learned to look for why a classmate was acting the way they were and what you could do to help make it better.

    I think we muddled through okay.

    1. Well, none of us have been caught holding up 7-11s yet, so so far so good. :) And I was reminded of one of the things I learned growing up when interacting with a deaf gentleman on the maintenance crew here. If he can't see my lips, he can't hear me. I think he appreciates that (now that I know he's deaf) I make the effort to face him when speaking to him.

  3. Good point. Sorry. Feel free to edit or remove.

    Also, from what I have heard, although I won't elaborate, you had your siblings have done a whole lot better than simply not holding up the local 7-11.

    1. I checked with my mom; she was not at all upset or offended by this post. And yes, we've done more than not landing in jail. I have a bit of a dark sense of humor, which may take some getting used to.

  4. Thank you so much for this. I have done all of these things and my children are fairly well adjusted, especially due to the fact of my multiple marriages, because my partner "didn't get it" or simply couldn't handle it.

    You are totally right about children not being stupid, they are like animals the can smell something off with their parent. Mine knew how sick I was before I did.

    Sure there were disappointments along the way, some role reversals at different periods, especially my youngest who became my caregiver at the tender age of 13. Now that she is older she understands and is no longer my caregiver, I won't depend on my children for that ever again. Its highly unhealthy for my relationships with my kids in my own opinion and experience.

    For not being a parent though you sure hit the nail right on the head with this one!

    Thank you and may God bless you and yours!