“I Have a Chronic Illness and This is What I Want My Parents To Know”

Dear Mom and Dad,

I know when you found out you were having a baby there were so many different emotions running through your head at one time. Happy, sad, excited, worried, overjoyed, stressed, but when it came down to it, you couldn’t wait to see the perfect little human that you produced. The cute little button nose, those sweet little baby rolls. Eventually though, perfect probably meant something different than it did to many other parents. because your child has a chronic illness. You’ve been to the multiple doctor appointments, hospital stays, and endless pharmacy trips. You’ve seen your child endure things that you never thought they would have to be put through when they were born into this world, yet they face it with the most courage and bravery you’ve ever seen.

There are some things that you don’t get to see though, and here’s what I wish you understood about my chronic illnesses:

I promise that I’m not lazy when I’m unable to do something. Sometimes I just am physically incapable to be able to do what you have asked. I know it’s frustrating for you, but it’s also frustrating for me because I often can’t do things that I used to be able to do. I even have to cancel plans because of the symptoms my body spontaneously throws at me.

Speaking of having to cancel plans… Many of my friends don’t understand the things that are going on, so they often leave instead of giving me support when I most need it. It’s frustrating and heartbreaking. That’s when I need you to be supportive instead of continuing to make me feel small for the things that I may take longer to do.

Plans don’t always get to go as planned. I’m not putting off college because I want to or because I want to live in your house the rest of my life. I have many goals, but school has to be on hold because my body can’t keep up just yet. When that time comes, don’t belittle me for having to put it off for a year or two. I’ll get there – it just might take me more time than most people.

I don’t like the hospital anymore than you do. You can say how awful the ER is because you only have a chair to sit on, but when I’m stuck behind the same 4 walls, for months at a time, too sick to even leave my room, it doesn’t make it that much fun either. The PICU stays, the endless surgeries, the 15 IVs in 4 days, the multiple brain surgeries, infusions, chemo, code blues, rapid response calls, and coming close to dying isn’t really my idea of a party.

Just because I’m ready to try the next procedure or trial my doctor tells me is promising doesn’t mean I’m eager to get something new, or want to continuously get things done. What it means is I want to get better and I don’t want to give up. It means I’ll do whatever it takes, even if it does mean a risky new painful procedure that I’ve done extensive research on. After a while many things outweigh the cons and many pros come to the surface, that’s when that trial or procedure is worth it.

Please just help support me when it comes to my decisions with my health. I will gladly take into consideration your opinion and what you think is best, but when it comes down to it this is my body that I have to take care of for the rest of my life. I do need to have some say in what type of decisions are made and whether or not I’m okay with trying them or sticking with them.

Just because I don’t always tell you or show it, I am very sorry for all the financial stress these illnesses put on the family. I know it costs a lot of money for out of pocket things and insurance and it’s incredibly stressful. However, I am so grateful because I know that without your help then I know I wouldn’t be able to make it without the additional help.

I don’t always mean to be cranky, or snap at you. But just as when you have a bad cold or sinus infection and don’t feel like doing something– that’s what I deal with daily, but some days worse than others. Some days the pain is too much and I lash out at whoever is there, and I’m sorry.

Saying things like “I wish I could just stay at home all day”, or “Must be nice not to have to get up and work all day,” and “I wish I had _____ so I could stay home all the time” isn’t something I find funny or helpful at all. It’s actually hurtful. I would love to be able to be out of the house all day, and work or go to school. I would never wish or want you to experience the daily pain that goes through my body just so you could skip a day of work.

Telling me I’ll get better if I just start exercising more, trying this new fad diet, or thing you read on the internet that has worked on 4 people you read about doesn’t mean that it’s right for me. I am working hard with my doctors and I trust them to help me control my diseases. I don’t have random symptoms, but actual diagnoses with real names. Most of them are chronic, meaning I’ll always have them whether they’re constant or come in flares. Regardless, they are still there and I won’t be “healed” even when symptoms are well controlled.

Don’t underestimate what all I know about my health. I’ve been seeing these doctors and hospitals since I was little, I pick up on the names and hints of doctors trying to sugar-coat things, I know what every machine is used for and I’ve taught more nurses than I can count how to use my feeding tube. I am very well versed in my illnesses, medications, allergies, medical history and surgeries, previous specialists and appointments, test results and what most labs should be. Many doctors are impressed by how much I do know about myself, so don’t write me off just yet when we go to an appointment.

If you want to be a true advocate for me when I’m in a critical situation you could at least start with knowing the names of my illnesses. I know some are complicated, long, and rare, but when I’m unable to speak and info needs to be given promptly it’s an easy task.

I’m sorry it’s hard for you to see your little perfect button-nosed little girl go through the unimaginable, please understand it’s not just affecting you. When one person in the family suffers, the whole family does.

Just like a chronic illness always remaining, so will the need of support from you as parents and supporters.

Love,

Ellen