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Living With Chronic Illness Doesn’t Mean Giving Up Who You Are – An Interview With Spoonie Author Lala Jackson

By July 24, 2017 August 25th, 2018 Autoimmune Disease, Chronic Pain, Interviews

Do you believe that a diagnosis of chronic illness is the end of the line for you? That now you can’t do anything you planned to when you were well? Lala Jackson has some good news for you! For this piece, I talk with the author of Beyond Powerful: Your Chronic Illness Is Not Your Kryptonite as she explains her unique and positive way of navigating chronic illness while inspiring others!


1. You were diagnosed with type 1 diabetes in childhood. What unique challenges did this present to you as a child?



I’m not sure why, but my diagnosis didn’t much phase me. I think I had felt SO horribly for months before my diagnosis that, by the time I was diagnosed, and my care team helped me feel better again, I was just happy to start feeling like a human being.


In some ways, I feel like it’s harder to get diagnosed later in life—when you’ve been able to live more life as “normal”—that you remember what that feels like and miss it more.


“Being diagnosed at 10 meant that everything in my life was really just a new adventure.”


Being diagnosed at 10 meant that everything in my life was really just a new adventure.


I was also lucky to have an endocrinologist who stressed to my mom that I should be encouraged to do anything I had done before my diagnosis. I was diagnosed on Thanksgiving Day and in the hospital until the Monday following.


Five days later, I had been scheduled to go on a backcountry snowshoeing trip in the Cascade Mountains near Seattle, and my doctor implored my mom to let me go. She did—I can only imagine however reluctantly—and I instantly learned that, while taking care of my health in such physically demanding and remote locations was a big responsibility, I could still do it.


I think that made a significant difference in how I saw this new thing because I never had the idea that it limited me in any way.


My mom also never tried to limit what I could eat. She let me learn how to eat and take care of myself the hard way—which I know some people would have a strong negative gut reaction to.



If I decided I wanted pizza or a piece of cake at a friend’s birthday party, she just made sure I knew how to dose my insulin correctly for it. Eventually, as someone with type 1 diabetes, you just realize that all of the carb-heavy food just doesn’t FEEL good to eat, so, you start turning it down.



I felt like that was a much better approach to the “No, my kid can’t have cupcakes anymore” approach that some parents with T1D kids take. There was never that kind of restriction for me to rebel against, so I learned early what I needed to do to take care of myself.



If anything, it’s become harder as I’ve gotten older. At 10, I didn’t really understand what the long-term complications could be. Now, I wonder just how long I’ll have my eyesight or how long my kidneys will last.



Things feel more real as we get older, and the weight is a bit heavier because we understand exactly what we’re carrying, I think.


2. Did you feel alone in your autoimmune disease, or were you around other children who struggled with a chronic illness?


I was the only one I knew with type 1 diabetes or any other chronic illness, but I always had enough fun explaining what T1D was that I didn’t mind. I felt a bit like a scientist/doctor with all my new medical, nutritional, and medicine dosing knowledge, and I think in a way it made me feel special.



I went to a few ‘teens with T1D’ support groups as I got a little older because my mom wanted to make sure I had that support, but I found that none of us ever wanted to talk about our diseases. We just wanted to watch movies and be normal kids.



“We just wanted to watch movies and be normal kids.”




3. In your opinion, what are some causes for the incredible rise in chronic illness among Gen Xers and Millennials?


I’m a big nerd, so I love reading about all of the science of chronic and autoimmune disease. An Epidemic of Absence: A New Way of Understanding Allergies and Autoimmune Diseases by Moises Velasquez-Manoff was an awesome deep dive—he explains one of the theories for why our immune systems have started turning against us more and more, resulting in allergies and a steep rise in autoimmune diseases like type 1 diabetes, multiple sclerosis, and more.


The basic gist is that, for thousands of years, humans lived alongside parasites, lots of germs, in close proximity to disease, etc. which essentially always gave our immune systems a job.



It wasn’t until the intense focus on cleanliness, which was in response to plagues wiping out major populations, that we started getting allergies. Our immune systems wanted to fight something and in the absence of parasites and diseases, it turned inward.


I think something like that combined with a society that tends not to value wellness and keeps everyone running at crazy speeds with very little consideration to whether our insane work ethic is actually good for our health is a ridiculously dangerous combination.


Moreover, it’s become so “normal” to be tired all the time, to feel like crap, to not eat to fuel our bodies, to never sleep, that when we start to feel drained from all of it—because there’s no way we can’t—people think that’s just part of getting older.


In reality, we’re running our systems down and sending them into health crashes.


Furthermore, doctors have a habit of not listening to these very real issues that are created because they think you’re just tired from everyday life. It becomes a never-ending cycle of sickness that our society isn’t built to support.


4. How did you feel when you were diagnosed with fibromyalgia? Relieved? Crushed? Somewhere in between?


Being diagnosed was at the end of several years of not feeling well and never being able to get an answer. In the months before my diagnosis, my pain levels had gotten particularly bad, and I was having a lot of blood tests come back with kind of scary results.



In the last few weeks before my diagnosis, I and one of my doctors had become pretty convinced that I either had early-stage MS or another autoimmune disease like lupus.


That was pretty overwhelming. I didn’t want another big thing added to my plate.


I think the frustrating thing about fibromyalgia is that it’s so long-term and there’s no real “FIX.” I don’t like taking medication, but I can be okay with having to give myself insulin because it’s something my body should be making anyway.


I very deliberately chose not to go on medication for my fibromyalgia, but I also have the clearance to do that because, for the most part, I can manage my symptoms with very strict attention to lifestyle choices around what I eat, my sleep, how I manage stress, exercise, my work life, etc.


In a big way, it’s a relief that it wasn’t an absolute requirement that I go down the route of more intensive treatments, which would have been the case if it were a diagnosis like MS.


But, there’s certainly an almost constant feeling of mourning—I hate that I can’t run at the pace I want, that I can’t always make it out to things with friends that I want to.


If I push too hard, I crash. It just is what it is at this point.



“If I push too hard, I crash. It just is what it is at this point.”



And, it’s hard to feel like I can’t keep up with the life I want to have. Making myself rest is a really good skill to learn, and I can acknowledge that, but, it can be really difficult when it starts to make me feel isolated or like I’m not doing enough.


5. What factors contribute to your positive attitude towards living with chronic illness?


This is going to sound overly simplified, but most of my positivity comes from not liking to be sad. When I was younger, I had a pretty tough home life, and that felt heavier than my chronic illness did.



Once I was able to get out of that situation, I realized how good feeling good was. I started to realize it was a choice. There will always be truly awful, depressing, horrible things to see in the world. There will always be downsides to being chronically ill. It will always come with a lot of heaviness and so many things that could absolutely crush us if we let them.


I generally don’t think about them because, simply, I don’t want to. I have to live with this thing either way—I can either choose to live with it and feel awful about it or live with it and choose to see the things that keep me happy.


Either way, I’m living with it. The work is the same.


6. What prompted you to write your book, Beyond Powerful: Your Chronic Illness Is Not Your Kryptonite?



I started out wanting to write about stories of courageous women. I’ve always been fascinated by how much bravery and resilience I see in my fellow women—we are an indomitable group.


As I started trying to formulate exactly what I wanted to write about, what stories I wanted to tell, and what point I wanted to make, I was in that tail end last few months before my fibromyalgia diagnosis.


I was working full time for a type 1 diabetes focused non-profit, trying to write this book, new to New York City and trying to explore, and I realized that just writing about brave women, while not writing about what some of the bravest of us go through, was full of crap.



I ended up being diagnosed with fibromyalgia about halfway through writing the book as it is today.


7. How can individuals living with chronic illness benefit from reading your book?


My advance readers have described the book as a boost of hope and inspiration to get back to the life they want.


I don’t try to act like chronic illness is a great thing, I’m not trying to say that this life is sunshine and rainbows, and I acknowledge that we are all in different places of health.



But, I do think reframing and choosing to focus on the good side of things is incredibly helpful when we’re trying to keep going, and that’s exactly the habit that I pass on to my reader.


It’s a simple, conversational read, and I want my reader to walk away from it knowing she’s far more powerful, far braver, and far stronger than she originally thought.


She can be who and how she wants to be in this world because she chose it, not because any health diagnosis gets to dictate who she is.


8. If you could sum up your book’s message in one sentence, what would it be?


Living with chronic illness doesn’t mean giving up who you are.


I want to thank Lala Jackson for agreeing to do an interview for I Told You I Was Sick and getting her answers back to me in record time.


To learn more about Lala and to purchase her inspiring book, visit LalaJackson.com.


Photograph of Lala Jackson courtesy of John Arthur Photography.


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