My Illness Through My Children's Eyes: An Interview
When I was first diagnosed with AS, my number one worry was how my illness was going to impact the lives of my children. I have two young boys, and they are the center of my entire universe. I constantly worried that my illness was taking a bigger toll on them than what they were letting on. They are both observers, and they suck everything in like a sponge. They are also both very intelligent, which makes it difficult to hide pain and emotions.
They understand my illness
One thing that has really shocked me is their understanding and compassion surrounding my illness. Some days it feels like they have a better understanding of my illness than the adults in my life do. For this article, I thought it would be interesting to interview them both separately so I could hear straight from them how they perceive my illness and how they feel it has impacted their lives.
**I want to note that my children have two completely different personalities. Noah is 9 and on the autism spectrum. He sees and feels things differently than most and has a peculiar way of describing thoughts and feelings. Liam is 7 and is very calm, nurturing, and sensitive and feels emotions very deeply.
What do you think ankylosing spondylitis is?
Liam (7 years old): It’s where your hip goes out all the time.
Noah (9 years old): It’s a thing where you have something inside of you that’s bad and it can affect a lot of your body parts.
How have things changed for you since I was diagnosed with AS?
L: Actually, not much.
N: I get worried sometimes when your back is hurting and your hips are hurting. So I try my best to not make you in pain so I say to only do things “if you want.”
What hasn’t changed for you since my diagnosis?
L: Nothing changed.
N: What hasn’t changed is us being on the internet. (LOL)
What has changed about me since my diagnosis?
L: You have not been going around the house that much.
N: When you groan it kind of scares me, like I’m worried about you.
What has stayed the same about me since my diagnosis?
L: Pretty much everything, you’re still the mommy.
N: You still laugh and you still tuck me in at night. Actually, a lot of stuff hasn’t changed about you.
Does anything about my disease worry you?
L: That your hips might go out on the stairs and you would fall and then we would have to go to the hospital.
N: The only thing that worries me is that your hips are hurting so bad and you have to use those to walk. I worry about more side effects. (I think he meant more symptoms popping up)
What is one thing you think you can do for me that helps me?
N: I can get stuff myself and I can grab stuff for you.
What’s the most annoying thing about my illness?
L: You’re sleeping in the bed for so long.
N: The most annoying thing about your illness is that, well, nothing is annoying about it. It is sad, but it’s not annoying.
What’s your wish for me or us for the future when it comes to AS?
L: To not feel pain anymore.
N: I wish this can stop and you can live back to your normal life, happily ever after.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?