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I Should Have Given Up By Now But I Won't Let Lupus Win
Have you ever felt hopeless because of a chronic illness? Were you angry and maybe resentful of the loss of your health and independence? Have you ever felt like your body turned against you for no apparent reason? Learn how one woman faced debilitating lupus flares head on, and embraced her life with lupus. By changing her outlook and perspective she eventually regained control of her journey, leaving “The Town of Used To” behind for good.
It’s a fact — I am a death cheater.
There was the time in my 20s when I almost died after being run over by a pickup truck traveling 50 mph. And then there was the lupus diagnosis and subsequent blood clots, mini-strokes, brain aneurysm and other medical absurdities that seem to come along with this chronic illness. Lupus is an autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Through the grace of God, an incredible support system and a feisty personality (What can I say? I’m Italian...), it seems I’ve been able to make a comeback again and again and again. Here’s what I’ve learned: if you have a chronic illness, you will suffer setbacks, pain and disappointments. While there are some things you cannot control, you have to learn to accept your illness instead of living a life full of regret.
Life in “The Town of Used To”
In 2007, several years after my lupus diagnosis and tango with the bumper of a Ford Ranger, I married an incredible man. For the first few years after our wedding, I experienced lupus flares that can only be described as an overload of unthinkable. My illness was so bad at one point that the hospital sent me home, because there was no other treatment they could provide. For a period of time, I slept, and only ate and bathed with the help of a nurse.
I was understandably frustrated and angry, and I was resentful and angry about my chronic physical illness. I wanted to enjoy life with my husband, I wanted to spend time with my friends, I wanted to travel and live as the 30-year-old person that I was.
The loss of health can interrupt so many parts of life — career, finances, intimacy, hopes and self-esteem. We can feel frustration, guilt (because we have to rely on others) and depression. Add a little pride to the mix, and refusal to reach out for any help, and you have a disaster slowly unfolding.
And so began a time when I often used the following phrase, “But I used to be able to… (insert activity, lifestyle, passion, etc.).” And with this, the mental damage began. Eventually, my husband coined a term in our house, “The Town of Used To.” Anytime I would compare my present day with old life, he would roll his eyes and say with a laugh, “Oh crap, we are going back there again?”
Have you ever traveled to “The Town of Used To?” It’s not a good place to visit. I noticed the more time I spent pining for the life I used to have, the more discontentment and pain I felt for the things that were involuntarily taken away from me. My craving for my old health and freedom was leaving me feeling bitter and discouraged.
Through the help of my super smart (and quite handsome) husband, I came to the realization that I had never fully grieved and mourned the loss of my old life. I needed to accept my illness and leave despair and dismay aside. Instead of mourning my lost opportunities, I needed to focus on making the best life I can here and now with what I have.
I made a commitment to change. I began to make a calculated and intentional effort to be grateful and cognizant of the positive things in my life, my life with lupus. It wasn’t easy, and I failed a lot. But if I didn’t change my way of thinking, I knew I’d end up constantly dissatisfied, with one foot in my new world of coping with a chronic illness and the other stuck in the past.
A Simple Thing That Changed My Life
If your mental passport is nearly maxed out with visits to a time that once was, I’d encourage you to join me in committing to not travel there anymore! One of the best things I did for myself was starting a gratitude journal. This was a life-changer for me. Perhaps, you can try it too. It doesn’t have to be fancy, even a notepad will do. You can even download an app on your phone. The goal is to jot down at least two things you are grateful for each day. It can be something as simple as, “I had a little extra time today and took a 20-minute nap,” or something more profound: “I woke up today — I was given another chance to change the world!”
My journal, prayers and support helped me retrain my brain and put a permanent restriction on visits to The Town of Used To. It has taken me years, but I can see the fruits of my intentional efforts and a shift in my way of thinking. Yes, I have a chronic illness, lupus, but no, it does not define my happiness. Today I am grateful to be alive, to have an incredible career and to be surrounded by people who love me and believe in me. I’m lucky to have an adoring mom, a patient husband and a sweet rescue dog. My life, my life with lupus, is defined by me.
And so, here’s to my next adventure, one far away from the hospital and most definitely not in The Town of Used To!
If you need some more support, come visit me at Lupus Chick. I’m your go-to girl for Chronic Illness advice!
Read more about Lupus in Marisa Zeppieri's Book Lupus: Real Life, Real Patients, Real Talk (1st Frist Edition)
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