Young and Chronically Ill

Posted on by Julie Jacobsen Deck

It’s difficult to find resources and support when you are young and chronically ill. There are lots of blogs, if you can find them, but even then, it’s hard to find someone who has the same diagnoses and severity of symptoms, AND a similar life story. The most common story you read in blogs and books is about someone who had a life and then got sick. They had a career, a family, a “normal” adult experience and then they became chronically ill. (Not to discount their stories in any way, it’s just hard to read about someone who was at least able to experience a lot of great things before chronic illness took control of their lives when you are a young person who has never experienced any of those things and may have to come to terms with the fact that you might never experience any of them.)

There aren’t many books about young people with chronic illness, fiction or otherwise. There is, however, a plethora of books about young people with terminal illness (AKA cancer)- in which the characters either die (and the rest of the characters learn important lessons) or miraculously get better. This type of book usually contains romance (because somehow these characters are seriously ill but have no symptoms that stop them from going out and having normal young adult experiences like dating).

Young people with chronic (often invisible) diseases are greatly ignored and have to deal with people doubting or even denying their illness on a daily basis. Friends and family members drop away. Worrying about the future takes on a whole new meaning.

I am the sole caregiver for my chronically ill daughter. Over fourteen years of frustration  led to my writing a fiction book with a chronically ill main character. It is not a self-help book. I tried to make it as realistic as possible, with the character’s long journey for help as she deals with doctor’s misdiagnoses and family members’ misconceptions. I hope it is a book that chronically ill young women can actually relate to, instead of more unrealistic books about “sick” teenagers falling in love!

Toni Bernhard’s article “The Extra Burdens Faced by Young People with Chronic Illness” really sums this up. It will probably be a tough read for young chronically ill people (basically a list of all the things you worry about and deal with on a daily basis!) but it will hopefully educate others who may not understand the extra burdens you face and help them understand your young experience. Read it here: https://www.psychologytoday.com/blog/turning-straw-gold/201403/the-extra-burdens-faced-young-people-chronic-illness

If you’re interested, you can also find more information about my book here: https://juliejacobsendeck.com/youre-still-sick-2/

 

6 thoughts on “Young and Chronically Ill”

  1. This is a very important article, thank you for writing it! I wrote a similar piece once (here’s the link, if you wanted to check it out: https://fibronacciblog.wordpress.com/2016/06/11/young-people-get-sick-too). The piece you shared from Psychology Today is a very good one too and I can relate to it quite a bit.

    What you said about the extra frustration of chronically ill young folks who never got to experience a halfway normal life is very true. As one who had a normal life and then got sick, it makes me doubly grateful for whatever years of normalcy I had! Thank you for that. 🙂

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    1. Thanks for the comment, I’m glad you liked it! Your piece was really great, so true that people just don’t associate “chronic” with “young”. My daughter got sick when she was 12, and got progressively worse in her late teens. So while she was able to finish high school and even go to college, it was definitely not the “normal” experience that most people have, when she had to constantly work around symptoms and sacrifice any kind of social life just to get through it. It’s hard being the mom, too, to accept that I couldn’t “fix” it for her.

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      1. Yes, I can understand your frustration. It is hard to accept that we can only do so much for our loved ones and cannot ease their suffering as much as we’d like. I think doctors feel similarly towards chronic illness patients too. Like they’re in the job of fixing people, and it’s not working for the chronically ill. :/

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  2. Judging by your response, I think you have been luckier than we have with the doctors you’ve seen. Over the years quite a few doctors have tried to make my daughter believe she was imagining her symptoms, other doctors have told her that her symptoms were her fault and to stop looking for a pill to solve her problems! Those things happened while I was in the room with her, I shudder to think what might have been said to her if I hadn’t been with her! We’re still hoping to find a doctor who might actually care enough to help her, though.

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    1. I am sorry for the late response, I am only seeing your comment now for some reason! Anyhow, I happened to have my share of doctors shaking their heads. Nothing in my brain indicated anything was wrong with it in the usual sense of the term. Nothing to explain the then-intermittent but severe back/head/neck pains (other than migraine) or the seizure-like muscle contractions. Because I had a long history of anxiety, panic and depression disorders, I am pretty sure they chalked it all up to that, and I did not fight too hard for a “real” diagnosis while I could afford not to. If they thought I was making this crap up, luckily they had the good sense of keeping their mouths shut – which was clearly more than what you and your daughter got! 😦 Then completely by chance, I ran into my current doctor. He was the first person who listened to everything *as a whole* – not piecemeal – and eventually worked with me towards a diagnosis.

      Overall, this was *way* better experience that I have seen most have in the chronic patient community. I am grateful every single day for my current GP who is really one of the best, most caring, doctors I have ever met! I wish more people were like that.

      Truly sorry for what you and your daughter had to suffer… I feel like this treatment is akin to revictimizing the victim when you feel bad and you go to a doctor, only to be insulted. 😦

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