3 Ways I Minimize the Effects of the 'Chronic Illnesses Monster' on My Life


I am Mrs. Delaware County America 2016; I’m competing for the title of Mrs. Pennsylvania America in June. My platform for the pageant is “But You Don’t Look Sick” – Invisible Illness Awareness and Support. I have four chronic invisible illnesses that function together in a little fun, dysfunctional family — Chiari malformation, syringomyelia, Ehlers-Danlos syndrome and polycystic ovary syndrome (PCOS).

One thing I don’t think is discussed enough regarding my chronic illnesses is the necessity to define its effects for myself. People choose how they perceive these illnesses, but I think it’s important for me to share how I’ve taken it, quantified it and defined it in my own way. These conditions are defined scientifically and doctors will explain it to you, but really, but what no one answered for me was how these conditions would affect my life, both professionally and personally.

For the last five years I have been confused by the changes in my body — weight gain then loss, chronic pain, migraines and inflammation to name a few. I listen to doctors who tell me how I should be feeling and I’ve looked online to support groups to see how others feel and how they deal with all of this internal physical havoc.

One day, though, it dawned on me, and I attempted to answer the question about what this illness means for me. I was diagnosed with Chiari and syringomyelia in early 2011— I was about to graduate college, get married and start law school. I had (and still am pursuing) my dreams and wanted to know how these things were going to hinder me. Well, I made the conscious decision and decided they weren’t.

It is so easy to get bogged down by the chronic illness monster and allow it to sit in the driver seat. However, I think the most underutilized strategy is embodying the strength and power we all possess to maximize or minimize the gravity of how things affect us.

1. Being flexible and adaptable. I played a lot of “trial and error” figuring out what physical activities I could do and what I couldn’t. It was frustrating to learn there was something I couldn’t do anymore that I used to be able to. It took me years to figure out what physical activities were OK, what gave me discomfort and which just weren’t worth the risks. It sounds silly, but for example, I really miss going on rollercoasters, but the jolting with my head is just something I know I can’t do anymore. Now that I figured (most of) it out, I am down close to 30 pounds from a mix of staying active (within my physical limits) and eating a PCOS-friendly diet.

2. Listening to my body. Let me tell you — this is the hardest one for me to listen to. I’ve always been a busybody (drives my husband crazy!). I’ve always been someone who needs to do something, be somewhere and be active in my community. Sometimes, though, my body just says no. These are days I have to cancel plans, lay on the couch and let my batteries charge. Having a chronic illness is like having a smaller tanked car when everyone else is driving a large SUV. I have a 10-gallon tank when everyone else has double. It’s important to realize and communicate to others that your body requires more trips to the station to refill the tank — these are the days I have to take a step back and just rest.

3. Not allowing my illness to define me. This is key. It’s a lifelong battle, but this is your life. Your chronic illness does not define you, nor should you allow it to ever sit in that driver seat. You are in the driver’s seat so as long as you choose to be. I would have never finished law school, passed the bar exam, held down a full time job, regained my active lifestyle had I let any of my illnesses take the driver’s seat. I control what I do and when I do it.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


Find this story helpful? Share it with someone you care about.


Related to Chiari Malformation

On the Days I Feel Like a Terrible Mother

Sometimes I feel like a terrible mother. My 12 and 15-year-old kids never eat breakfast at home, and I rarely cook dinner. I’m sure they don’t eat a perfectly well-balanced diet, and part of me does not give a damn. I’m not good at planning social opportunities with others their ages. In fact, there have been times when I’ve avoided [...]

The Note That Kept Me Going When I Was Discouraged by My Son's Rare Brain Condition

There are moments that happen in our lives I like to refer to as “blue blessings.” They happen when we are really down and heavy-hearted. They seem to come out of the blue and whisper that it’s going to be OK. They surprise us with their simplicity and the ability to touch our hearts, encouraging us [...]

The Phone Call That Convinced Me to Stop Working and Take Care of My Chronic Illness

Sometimes we all need a push, a nudge from the universe to trust our own inner wisdom. For me, a phone call was the catalyst to propel me to forward to follow my own journey to wellness and healing. After spending more than half of my life looking for answers and a name to call [...]

The Difference That 5 Seconds Can Make

I only had a moment to run in for an emergency stop at the grocery store. I had so much stuff to try to fit in that day, like trying to find big boy pajamas that buttoned down the front. I had just found out my sweet little boy had to have brain surgery. Donna [...]