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5 Things I Wish My Parents Realized About My Life With Chronic Illness

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Everyone with a chronic illness knows that the only people who really understand are those who have an illness, too. Whether you have made friends with people who share the same disease you do or not, people with chronic illnesses make up an amazing community that support each other and understand each other, because we’ve gone through a lot of the same things. 

For all the healthy people out there, living their lives completely carefree, it’s hard to think that someone could be struggling so much, an invisible struggle. Some people try to understand and support us, and some don’t, leave us hanging, and drift apart from our lives. Even the closest people to you cannot fully understand your illness unless they could spend a month in your body. My parents, who are huge supporters of me, are a great example of this. They know the realities of my life, but there are still things they don’t know or understand. Simply, because they will never be me. 

1. I hide a lot of my pain, problems and symptoms… because there are just too many.

Since dealing with chronic pain from Lyme disease, autoimmune encephalitis, and many other conditions for seven years, pain is not new to me. Discomfort is not new to me. When you see me smiling and having a good time, it doesn’t take away the pain. I have an incredible capacity to hide the amount of pain or distress I am in, because I want to have fun, but inside I am often still struggling, and you often don’t see that. I don’t want to complain, so I keep a lot to myself.

girl lying on bed looking up with tears in her eyes

2. I feel bad about your situation too, and it makes me guilty sometimes.

I don’t want to be a burden to you, but I definitely feel like I am. I am highly aware of the extremely high medical bills, from every doctor that doesn’t take insurance. I know ambulance rides are extremely expensive and I get a lot of them. To make matters worse, I feel guilty that you work less than ever before to take care of me. I see the distress on your faces as I get taken to the hospital, see you make stressful phone calls and wish it could all go away. I know I’m the one with the illness, but the illnesses impact the entire family. I have worried about our finances and if we have enough money for all my treatment. I feel guilty because it’s extremely unfair, but there’s not much we can do about it. But I want you to know that I am extremely grateful for all the money, time and commitment you have given me to try to make me feel better.

3. I cry more than you think.

I am a strong person, but I do break down. I cry myself to sleep, I stay up late Googling how to fix things, and cry about wanting my old life back. I cry about things I have missed, friends I have lost, feeling isolated, and being healthy and active. You know me as having an extremely positive mindset and someone who never gives up, which is true, but it doesn’t mean that my illness doesn’t take a toll. You don’t hear me crying at night, and I don’t want to disrupt your sleep either.

4. If I wake up in a bad mood and lash out you for no apparent reason, I probably had a bad night.

When I’m up all night in pain, mad and annoyed, can’t fall asleep, and everyone else is sleeping, it is frustrating. Especially when it happens all the time. When you may think I’m having an attitude the next day, you don’t realize it’s because I probably spent two hours immobile on the bathroom floor, woke up every other hour, my whole body felt like it was breaking, and I was dealing with it by myself in the middle of the night. It’s hard to get quality sleep, and even without it, I try to wake up with a smile because I survived the night. It’s nothing you did, it’s the disease making me irritable.

5. I wish you realized how my illness made me lose aspects of my childhood innocence. 

The chronic illness world can make you grow up very fast, and I feel that’s very true for me. Stressful doctors appointments since I was in middle school have made me need to be mature beyond my years, and dealing with life-changing medical problems, that many people cannot relate to, makes me feel like I went from a child to an adult. I wish I didn’t have to worry about medical appointments, medications, and how to deal with my life of chronic pain at such a young age, but now it’s really all I know and remember. I wish I could have been more carefree as a preteen and early teenager, but I know that living with a chronic illness has made me a more compassionate and understanding person. It made me mature when I should have been able to just be a kid, but it has also given me wisdom to help others. 

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Originally published: November 14, 2016
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