Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at email@example.com or tag @folksstories on Twitter with the #askada hashtag.
My Daughter Is Making Fun Of My Lupus! Help!
I have Lupus. I also have a young elementary-school-aged child who doesn’t know that there is anything “wrong” with me. Her father died young, and she is extremely sensitive to hearing anything about sickness or death.
Lately, my daughter has been doing something that really bothers me. I get rashes and sores on my face and other parts of my body, and when they happen, she teases me about them… sometimes in front of her friend! When I asked her why, she told me my skin embarrassed her.
I’m heartbroken. What should I do about this?
I can understand where you feel stuck. Lupus is a chronic condition that you’ll be managing for the rest of your life. Because of her father’s death, you’re trying to protect her from the realities of illness, and keep your diagnosis private. You don’t want her to panic that she will lose you, too.
However, it’s also your responsibility as a parent to teach her to be respectful, empathetic, and kind. How would you have reacted if she teased her teacher, a supermarket cashier, or one of her friends if they were the ones with a skin condition? You would have spoken up for them, right?
Which means you should also speak up for yourself. Doing otherwise teaches your daughter that making fun of people is acceptable.
It’s time to talk to your daughter about your autoimmune disorder. The Lupus Foundation of America has a great resource on how to talk to people about your condition, but if you’re feeling extremely anxious, consider working with a family counselor. This will allow you to work through some of the fears you have about sharing the news, and you’ll be able to discuss it with your daughter in a safe space when you’re ready.
There’s one more thing I want to address. Your daughter mentioned that your sores were embarrassing her. Often, embarrassment stems from other people’s outside opinions. It’s likely that your daughter’s friend originally pointed out the rashes and sores to her, and because your daughter didn’t know why you had them, she wasn’t able to explain it to others. In other words, had she known the sores and rashes stemmed from Lupus, she likely would have stuck up for you.
Don’t feel defeated. By making the effort now to communicate with your daughter, and show her what behavior is appropriate and what is simply hurtful, you’re strengthening your relationship for the future and helping her to develop into a caring young woman.
I’m Afraid To Go Outside, And My Friends Are Starting To Notice
I’m having trouble leaving my house. I suffer from extreme anxiety that something bad will happen to me if I do.
I do leave on occasion, but usually only if it’s an extreme emergency. I used to get by inviting friends over, and turning down offers to go out, but it seems like people are noticing and really laying into me about being reclusive.
I want to change. I don’t know how to change. I don’t think I can change. Help.
Here’s the great news. It sounds like you have a good support network. You’ve managed to hide your fear of leaving your home for some time, while still maintaining an active social life. Your friends are now noticing that you are exhibiting reclusive behaviors, and they want you to get help. Consider these people your A-team, and lean on them hard as you work through your anxiety and fears of leaving.
You’re just going to need to groom them and teach them what type of help is acceptable and healthy, and what really isn’t helpful at all. Forcing you to leave your home or nagging you to do so by talking about how “easy” or “simple” it is just won’t help. Ask them to support you, listen to you, and tread at whatever speed you’re comfortable.
You’re going to need to groom [your friends] and teach them what type of help is acceptable and healthy, and what really isn’t helpful at all.
Here’s the part that’s going to be more difficult for you, though. You can’t stay inside forever, which means you need the help of a mental health professional. Since getting out is hard for you, you might consider using one of the many apps, like Talkspace, that can pair you with a licensed therapist in your state for online sessions. Hopefully, with time and support, this will lead to you feeling better about braving the outside world.
Just asking for help makes you such a brave person. You’re young, you have a good support network, and there’s a whole world of potential just outside your front door. Know that you can beat this.
Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email firstname.lastname@example.org and tell us your problem