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).

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

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.