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/