When it comes to the most important roles in life (in my opinion – spouse and parent) no one gives you a handbook with practical, helpful tips and tricks.
And so it was when I received my autoimmune disease diagnosis. My rheumatologist gave my illness a name, and started me on medication, but he didn’t provide any advice on what it would mean for me long-term, what I should do that day, and the day after, and the day after that one.
Thankfully there are other patients out there, telling their stories and sharing their experiences.
I recently read Ilana Jacqueline’s Surviving and Thriving With an Invisible Chronic Illness: How to Stay Sane and Live One Step Ahead of Your Symptoms.
It is the book I wish my doctor had handed me that November morning all those years ago.
While I admit some of the advice and some of the anecdotes don’t apply to me (I’m not trying to decide if I can move out of my parents’ home, for example) I’m still glad I read it. And as you can see from the photo, I still found a number of passages to highlight and mark with sticky notes.
“Life with chronic illness is about managing expectations while keeping the hope alive enough to still make plans for the future.” (So beautifully put)
“Chronic illness isn’t something you beat or fight. It isn’t a race or a life-long quest to return to normalcy. You don’t reverse, battle, or spar with it. Chronic illness is something you outsmart.” (I haven’t figured that part out yet. I admit, most of the time I’m still trying to resist my chronic illness, still trying to prove I’m tougher and stronger than it is.)
“Acceptance isn’t defeat: It’s a declaration of self-respect under irrefutable circumstances. This is where you are and you’re going to make the best out of every moment of it.” (I had never thought of acceptance in terms of self-respect.)
“Learning how and when to ask for help is going to be a huge asset to you in life.” (I continue to struggle with this one.)
“It is your body and your responsibility to treat it with confidence, intelligence, and above all, compassion.” (An important lesson for every human being.)