To My Parents, Who Are as Unsure How to Navigate Chronic Illness as I Am

Dear parents,

I know this isn’t the life that you imagined for me some 30-odd years ago as you were planning on having your first child. No parent dreams of a life spent in hospital emergency rooms, but yet here we are 30 years later still facing much of the same things.

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As much as I’d love to tell you that it has gotten easier, it hasn’t. It’s still a constant struggle, but it seems that’s just how it’s supposed to be for us.
Now that I, too, am an adult, I can hear in your voice just how much it bothers you, even when you’re trying your hardest to be strong. You’re trying to be strong for me, just as I’m trying to be strong for you. Perhaps it’s time we stop feigning strength we don’t have.

I don’t always know the best things to say either and I don’t know how to warn you when I’m feeling like I’m on the edge of an escarpment and starting to lose my footing.

As a young adult with a chronic illness who’s as unsure about how to navigate all of this as you are, here are the things I want you to know:

1. This isn’t your fault.

No really, it’s not. There’s no way you could have predicted this and even if you had, I don’t regret the life that I have. Even though this disease is genetic, it’s obviously not something that you wanted me to have. No parent would ever wish this upon their child and I can see in your eyes how much having to watch this breaks your heart.

You keep saying sorry for something that truly isn’t your fault. I know how much you’re frustrated that I can’t seem to ever catch a break. All of those missed opportunities are felt by you as much as they are by me.

I know you mean it when you acknowledge that you don’t know why I sometimes seem to be suffering more than other people my age. Sometimes it just isn’t fair but that’s OK.

2. You aren’t going to be able to make it go away.

I know as a parent you inherently feel as though you want to protect me and fix it, but this isn’t something that can be easily repaired.

As a teenager I was so focused on what I was going through that I didn’t stop to even consider how you felt through all of this, but now I remember vividly the first time I noticed desperation on your face and I’ll never forget it.

Over the years I’ve gotten very good at managing pain; however, that particular day I wasn’t able to. I lay in a hospital bed holding mom’s hand and the pain was becoming increasingly worst. I tried to breathe deeply. I held on tighter, and then even tighter. I started rocking back and forth. Moaning soon turned into screaming. I distinctly remember Dad’s face as he ran out of the room to plead with the hospital staff to help. I’m sorry you both had to go through that. It must not have been easy as parents to experience that.

There will be more of those moments. There will be days where you won’t be able to do anything but hold my hand. Just know that I appreciate not having to go through all of those moments alone. Regardless of how much it hurts, it really does help to know that I have your support. You may not always know what you can do but just know that your efforts are enough.

I also appreciate you bringing food simply because you aren’t sure of what else to do. It helps, even when you feel it isn’t. There isn’t a manual for parents to learn how to help their kids go through a lifetime of sickness but if there ever was one, food would be mentioned so thank you.

3. I don’t expect you to have all the answers.

I can’t expect you to know everything, especially given that I myself don’t always know how to communicate what going through this feels like. It’s a roller coaster of emotions. They say that there are five stages of grief (denial, anger, bargaining, depression and acceptance) and sometimes I go through all of them in the same day so I understand how it could be difficult for you to gauge what to say.

Sometimes I have a hard time communicating what I need and leave you guessing, so thank you for your patience in those moments. Even when I am irritated and you feel like you’re doing nothing more than making the situation worst, just know that I can see how much you’re trying and appreciate the gestures.

4. What you are doing is enough.

I really do feel loved and know that you will always be there for me doing all that you can. I can’t count the times you’ve helped me find the strength to keep going. You’re always there to listen to all the things I’ve been feeling and that alone means the world to me.

5. I appreciate all of the little things that you do for me even when I forget to say so.

I really do appreciate every attempt at making things a little easier. Every hug, every word of encouragement, every cold cloth, every ride to the doctor and every prayer; none of them have gone unnoticed. There isn’t a thank you in the world that’s big enough to articulate how much they’ve all meant to me. All of your efforts have made this debilitating condition a little easier to manage so thank you.

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