Photograph courtesy of Jenni Grover
“I am not my chronic Illness. I am a babe.”
By Jenni Grover
In 1997, at the age of 25, I was diagnosed with fibromyalgia, a syndrome that causes chronic muscle pain and fatigue, as well as sleep, memory and mood issues. Soon after that diagnosis, I was told I also had asthma, anxiety, irritable bowel syndrome, thyroid disease and more.
For years I struggled, taking test after test and trying a wide assortment of medications, diets and health regimens in an effort to control my symptoms. That was frustrating on its own, but what was worse was the disbelief I’d encounter when I explained my condition to people. I’d often hear, “But you’re way too young to feel that way!” or “But you look fine!” The worst is when people say, “I’m sorry; that is so sad.”
Yes, I am young. Yes, I am fine. And yes, my chronic illness is sad. But I choose more often to focus on the positive: I am creative, and I have choices. And even when I’m cramping and blubbering and whining, I’m still a hottie.
In recent years, I’ve found success through a combination of many approaches, including cognitive therapy, biofeedback, physical therapy, medication, diet modifications, exercise, meditation and an incredible support system. There are plenty of days that I don’t feel great, but I’ve learned to roll with the punches and have fun anyway.
Today, I feel good more often than not. That’s a success I earned, and I’ve learned a lot along the way about maintaining my identity in the midst of a swirl of negative energy. For starters, get your team in order—and not just your healthcare team. I mean your friends, family and all of the other people who help you be the best version of you. I actually count my mailman as part of my team! He sings when he delivers my mail. I have sung duets with him in my foyer. And it may seem like a small thing, but he brightens my mood so much.
I’ve also learned that to really thrive, you have to steer clear of things that threaten your positive outlook. For me, that means being really careful about which support groups I follow and participate in. I quit Facebook groups where people just moan all day, because that’s not helpful. If you’re trying to learn how to thrive and move beyond your condition, seeing miserable memes can be a really big bummer. Instead, look for support groups where you have productive conversations and share strategies.
Finally, I’ve learned to have a sense of humour during my rough times. Last year, I lost access to a lot of my medications due to insurance issues, and my irritable bowel syndrome flared up in a significant way as a result. Suddenly, at 43, I was pooping myself. It was crazy and frustrating, but I decided to find every and any opportunity to laugh about it.
I think one of my biggest successes has been helping others by sharing my story. It’s not something I could’ve imagined when I was diagnosed 20 years ago and started my blog, ChronicBabe, soon after. I get letters from people who tell me I saved their lives, and that they are thriving because they found me, learned from me, and are putting my advice into practice. I’m not sure it gets much better than that.
Photograph courtesy of Stefanie Stefano
“Simple changes have changed the course of my life.”
By Stefanie Stefano
They say when you have one autoimmune disease, it’s more likely you’ll have another. When I was 13, I was diagnosed with Type 1 Diabetes—a tough diagnosis to get so young, but it was pretty manageable. However, when I was 24—just a few months after I got married—I was diagnosed with rheumatoid arthritis (RA), which was significantly more debilitating.
In the weeks leading up to my RA diagnosis, I started to ache in ways I didn’t think were possible. My joints hurt. Everything hurt. I couldn’t even bend down to tie my own shoes, and as someone who exercises regularly and was studying to become a physical therapist at the time, it was disorienting—and depressing. After my diagnosis, I was put on a strong medication for my symptoms for a year and a half. It was one of the worst times of my life. I should’ve been in newlywed bliss, and instead I was taking low-dose chemotherapy—and I wasn’t feeling better at all. I was tired all the time, and even started losing some of my hair. I was slipping closer and closer to a place of losing all hope that I’d ever feel better.
Then I was introduced to a family friend who also had RA, and he told me about an integrative doctor who had helped him a lot. Desperate to get off that awful medication, I made an appointment—and it turned out to be one that changed my life. She recommended I overhaul my diet, cutting out gluten, dairy and anything processed (which are pro-inflammatory foods that can cause autoimmune disease flare-ups) and loading up on anti-inflammatory veggies and fruits. I also started taking a lot of vitamins and supplements, such as fish oil and turmeric (both anti-inflammatory powerhouses) and probiotics, which have been shown to help promote gut health.
Within a few months, I went on my first run in more than two years and sobbed tears of joy the whole time. I didn’t think I’d ever run again. When my symptoms were at their worst, my husband had to carry me up our stairs and help me lift my feet. The fact that I could exercise again felt like a miracle. Then, last summer, I did a triathlon—and four months ago, I had a baby. These felt like major victories.
Nowadays, I’m managing my symptoms by sticking to a very clean, anti-inflammatory diet and keeping my stress levels as low as possible. I’ve been off medication for more than a year, and when I do get a flare-up of pain, I almost always know why. If my daughter is up all night, that lack of sleep can cause pain. Or if I stray from my diet a bit, I’ll have stomach issues or joint pain.
What I tell everyone dealing with a chronic issue is that it’s crucial to be your own advocate. I was blessed in that I happened to stumble upon a family friend who shared his story with me and pointed me in the direction of a wonderful practitioner. I’ll never forget my endocrinologist saying to me, “Why don’t you just take the medication? It’ll be easier than not eating all of the things you’ve now cut out of your diet.” But for me, that wasn’t the answer.
When I look back to the days right after my RA diagnosis and where I am now, it’s remarkable how much my attitude has shifted. Now I know I can deal with whatever is put on my path.
Photograph courtesy of Julie Cerrone
“It’s just a bad day, not a bad life.”
By Julie Cerrone
Psoriatic Arthritis. Avascular Necrosis (AVN). Complex Regional Pain Syndrome (RSD). Depression. Anxiety.
That’s a list of just some of the chronic health conditions I have, but I do not and will not let these diagnoses define me. This concept took me a while to grasp. But I’ve decided to define myself as the person I am on the inside—the person I was before my diagnoses, but with a little more experience, a lot more confidence, and determination like no other. (Make sure you know these seven surprising arthritis symptoms.)
My health issues began when I was about 10 years old, when I started to feel an unrelenting twinge in my left knee during softball practice. I had my first knee surgery when I was in fifth grade. The docs thought it was a torn meniscus, and the surgery didn’t do much to help the pain. Through middle school and high school I was always in physical therapy; you’d find me sitting on the sidelines during gym class because I was either on crutches or wearing some sort of brace on my knees.
Five surgeries, several wrong diagnoses, and 17 years later, I was finally diagnosed with what had really been behind my symptoms all along: psoriatic arthritis, an inflammatory autoimmune disease which causes pain, swelling, and/or stiffness in one or more joints, sausage-like swelling in the fingers or toes, pain around the feet and ankles, and extreme exhaustion that doesn’t go away even with plenty of rest. I was also diagnosed with Avascular Necrosis (AVN) of the knee, a condition where part of your bone dies due to a lack of blood supply.
In 2012, I had to leave my job as an information technology consultant and go on disability for almost four years. I spent a solid year feeling really depressed and alone—in addition to being in pain.
I’ve always been a very positive person; I have my mum and dad to thank for that. They taught me to do my best to overcome challenges, not dwell on the negatives, and try to live life to the fullest. But figuring out how to do that while you're sick isn't easy.
A few years ago, I began reading a lot of blogs by people with chronic illness and started participating in Twitter chats and Facebook groups. It really helped me to learn about how others have dealt with their conditions, and I realised I wanted to use my experiences to help others who were struggling, too. So I started a blog and used my personal mantra—It’s just a bad day, not a bad life—as its name.
I never realised that blogging would change my life completely. It's snowballed into working with different pharmaceutical and healthcare companies, speaking at conferences, volunteering and more. I’ve also become a certified holistic health coach, as well as a yoga teacher. All of this has helped me see that there might be a reason for all of my health challenges. Maybe I was meant to face them not only to help others, but to also propel me down a new path.