Tuesday, November 6, 2007

Lupus and Social Isolation in Adolescence - Part 2

Originally posted on Saturday, December 10, 2005

Part 2: Parenting a Teenager with Systemic Lupus

Parenting a teenager with systemic lupus may at times feel like you are dancing in a minefield.

You have to make choices in how you will parent your child. Should you run in crisis mode or should you approach your parenting as a challenge with the ultimate goal of raising a child into a successful adult?

We want to protect our children.

In particular, when our child is ill we want to shelter her from the tough things that life throws at us.

But, when parenting a teenager with lupus, you need to ask yourself, "How much sheltering is too much?"

The best way to find the answer?

Sit down with your teenager and talk with her... no, more than that... LISTEN to her.

You may want to try to start by just saying, "I want to be a good parent to you, but I need your help. Please tell me what it is like for you having to deal with this lupus and being a teenager?"

And then be quiet and LISTEN.

Take in what your child is saying.

You are probably going to be hearing a recurring theme:


This is something that I first noticed when participating on a lupus message board. Our younger members persistently brought up their struggles with fitting in with their peers.

Of course, this is the resounding fear of most teenagers, but the difference for the teens with lupus is that the lupus is actually interfering (big time) with their ability to just be a normal teenager.

Your teenager with lupus probably lacks the physical stamina to keep up with her peers. If her friends are planning a full day of activities , your teenager will not be able to keep up with her friends. If her friends our going to be outside at the beach, or on a picnic... she can't be in the sun.

If she tries to explain this to them... her friends will not understand. They live in amazingly healthy, active bodies that can burn the candles at both ends.

Your child does not.

This only compounds the grief and frustration of having systemic lupus.

She may try to keep up with her friends, but then she runs the risk of pushing herself into a flare.

If she does not push to keep up in socializing, she risks being "out of sight out of mind" in her relationships which will only increase her social isolation.

As a parent, what should you do?

1) Ask your child for input. She has to live with lupus for the rest of her life. You are going to have to teach her how to do this with as healthy an attitude as possible. Listen to what she has to say.

If she won't talk to you, ask her to write you a letter.

Refrain from criticizing what your child has to tell you.

This will slam the door shut between you and her.

Just get the lines of communication going.

2)  Take each problem as a challenge... a goal for the both of you to obtain.

If she wants to go to the school dance, then maybe you are going to have to compromise and keep her home for a day of rest prior to the dance so that she can have the energy to enjoy.

3) Understand that lupus causes a "brain fog".

Mental activity for many of us with lupus is physically exhausting.

Your child has to put in a full day at school and then come home and deal with homework.

Teach your child to do tasks in mini-bytes. Fifteen minutes of homework, ten minute break. If she needs a nap, then she should take a nap.

Imagine how frustrating it must be to try to get your schoolwork done, needing to rest a lot, and still trying to maintain a social life.

4) If she really can not keep up with school work, you may have to contact the representative of special education in her school district to see if her work load can be amended.

Lupus can be a physical disability; she may be eligible for an adapted curriculum. (The concern here is to try to do this without having her classified... this can cause further anxiety for her of being labeled "different".)

5) Teach your child to prioritize.

If there are several things that she wants to do, she needs to make a list and top off with what is the most important.

She is going to need to learn to maintain her health by learning to focus on what is important in her life. Most of us with lupus don't have the energy for wasting our energy on non-essential issues.

She may need to evaluate her friendships and prioritize who she should expend energy on. You need to teach her how to do this in a way that won't alienate her from her peer group.

If she is trying too hard to garner the approval of non-supportive teens, she is going to have to take a look at that.

There may be other peers in her social circle who may not be the most popular, but who have treated her kindly and may potentially be good friends for her.

6) Talk to her physicians about how to help her adapt and make sure she is present and participating in this.

7. If the challenges are too overwhelming for you or her or the both of you... seek professional counseling.

Do not hesitate... just do it.

If you need help, get it sooner rather than later.

The longer you wait the more challenging it becomes to resolve an issue.

Chances are likely, already, that your teenager with lupus is already struggling with depression and grief.

Early intervention is the key to preventing a lifetime of suffering.

Here are some of the following issues that I frequently encountered when counseling teenagers with chronic health problems:

- Fear that no one would ever fall in love with her
- Fear of never being pregnant or carrying a child full term
- Fear of having a shortened life
- Fear of being "stuck" with parents forever
- Fear of being perceived as different.
- Fear of rejection.
- Social anxiety
- Panic attacks
- Risky behaviors (ie: alcohol, drug, sex) in order to "fit in"
- Lack of assertiveness skills
- Passivity (can occur when child has been over protected)
- Fear of never being able to have a career
- Fear of not going to college and being left behind by classmates
- Anger regarding medication and medical procedures (feelings of being controlled and losing control)
- Depression
- Suicidal ideation (People would be better off without me)- REQUIRES IMMEDIATE MENTAL HEALTH INTERVENTION
- Anxiety from chronic pain, chronic infections and/or medical procedures
- Non-compliance to medical treatment recommendations

I can not overemphasize the importance of contacting a LICENSED counselor to help you and your child navigate through the lupus. My experience as a social worker has been that people perceive that they are weak if they need counseling. The reality is that the people who came to seek help, were incredibly STRONG. They had the ability to know they needed help and had the courage to request help.

You have to shop around for a good counselor. Most counselors are incredibly professional and do great work with others, but when you are seeking mental health services you also need to "gel" with your counselor. You are making yourself emotionally vulnerable and you need to feel emotionally safe to do so with your counselor. So there is a need for your personalities to mesh a bit. That sometimes requires shopping about.

Ask your child's physicians for a recommendation, and check out your local lupus support chapter(s). Local chapters should know who is the best to work with in regards to lupus.

You can read more about parenting teenagers and lupus in teens here:

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