Looking for a holiday stocking stuffer?! Look no further!
Fabulupus is the latest book to receive the Lupus Foundation of America seal of approval. Written by Jessica Kundapur and Jodie Nimigon-Young, the book is a guide to living well and being successful as a young adult with lupus. Using their personal experiences of navigating young adulthood while dealing with lupus, Jessica and Jodie provide tips and tricks for dealing with friends, family, finances, planning a career, maintaining a social life and more. We talked to them to find out more about their motivations for writing the book, which you can purchase here.
What inspired you to write Fabulupus?
Jessica Kundapur: The main inspiration was simple; there were no books specifically for young people with lupus! I was diagnosed when I was 26, and though many of the books I read were helpful, none related to my life as a young person. I was still in school, I was dating, I was trying to figure out my career goals, and I was trying to have a fun social life – all while managing a chronic illness. What inspired me to write Fabulupus was that I didn’t want to give up (on anything!) and the other young people I met with lupus didn’t want to give up either. This book is for them.
Jodie Nimigon-Young: I had been involved with volunteering at different levels (local, provincial and national) since my diagnosis, and had heard many stories and the same questions/concerns from youth and their families, that I knew this information, support and encouragement needed to get out there. I had always wanted to write a book but the task seemed daunting to approach solo, which is why I was involved in youth newsletters (in different iterations, when they existed). When Jessica approached me to write a book with her, because she liked my writing style in the newsletter articles, and was equally challenged with initiating to write a book by her self – I immediately jumped on board.
Why do you think it’s important for young people with lupus to read this book?
JK: Fabulupus provides specific tips and inspiration on managing your illness and life in the present and helps young people with lupus plan for a wonderful life for the future. Fabulupus shows that while lupus is tough, you can have an amazing life and reach your goals; but it does take a lot of acceptance, flexibility, patience and creativity.
JNY: This book is the ultimate assurance that you are not alone and that you can come out a better person, on the other side, after facing challenges on a regular basis. There are a lot of useful strategies to tackle different everyday, real life situations that youth face (with or without lupus). We provide examples from our own lives to show how we are all human, that living well with lupus is ever evolving and a constant struggle to strike a balance – but that it is worth the ride.
Is Fabulupus just for young adults with lupus? Can others benefit from reading it?
JK: Anyone with a chronic illness will have faced what they’ve perceived as disadvantages and roadblocks, and this book helps people with a way of dealing with obstacles. One example is the common fear of a ‘gap’ in a resume. Many people (lupus or not) face this same issue and we help guide people with how they can “fill the gap”. More importantly, we empower our readers to not be ashamed that there are gaps, to encourage them to be proud that they were conquering a flare or another difficult time in their lives.
JNY: This book is for anyone with any chronic health condition, those who love them and even for those without a chronic condition who need a little boost through a challenging life circumstance. Even we have found useful information in the book, while re-reading it!
What advice would you give to your younger self that you wish someone had told you about growing up with lupus?
JK: I wish someone had told me that I would still be able to accomplish my goals, though I would have to do it more slowly and with some creativity. However, the message I got was to be “less-than” and to accept that I can’t have what I truly wanted. I learned this is not true- you can reach your goal, but it can take more time (that’s okay) and you need to ask for help (also okay!).
I also wish people would have told me that I could invent brand-new and unexpected goals –like writing a book!
JNY: To continue pursuing my dreams, not worry about what other people think about how I get there (or what I should be doing, or that some things may not be possible because of my illness). It may take some time, but I will get there and have everything I ever wanted – including being stable with lupus, married with children, and working a career I enjoy.
Which chapter resonated most with you when you wrote it?
JK: For me it was the Career chapter because when I was diagnosed, I really thought my ambitious career plans would be over. Writing this chapter allowed me to reflect on how to be flexible, adaptable, and find activities that I really enjoy and this was the basis of what would become a thrilling and fulfilling career path.
JY: There are two, Relationships and Spirituality. These are areas which hit more home and personal for me. Others which were helpful with practical information were Education, Employment, Finances, but didn’t hit me as emotionally.
Can you give us an example of a time you could’ve used the advice you give in the book?
JK: I wish I knew more about the scholarships and resources that were there for students with chronic illnesses. I also wish I had devised a personal ‘disclosure strategy’ with my employers. I often felt I had to keep everything a secret, rather than ask for help and get the extra support that I needed.
JNY: Someone should always check with their doctor or other health professional (depending on situation you are seeking assistance) before 100% following advice in any book. Otherwise, the book is rather universal.