It Is Okay!

Lying to myself is what I do to cope, or not. Survival is complicated when you have a chronic illness so my defense mechanism is lying to myself… and others.

If I’m being completely honest, I lie to myself every morning when I wake up. I start my day by telling myself it’s going to be a good day and I will feel healthy. I lie to myself saying over and over in my mind “I feel good” even though my joints hurt and I woke up just as tired as when I fell asleep.

Lies run rampant in my mind as I try to push myself to lead a “normal” life. I didn’t choose this condition nor do I enjoy having painful joints, palpitations, and fatigue so I choose to push through. Push through to live as best as I can. The painful reality is I will never live a “normal” life. I was a single mom and nurse that worked 32 hours a week. I ran from morning until night just to get up and do it all over again the next day. My new reality, living with lupus, is about unpredictability. I never know what will happen from one hour to the next. There are many days I miss the person I used to be. The person that could pack up and hit the road for a little adventure.

Now, I need to plan ahead, make sure I have my meds, check out if they have handicap accessibility, stairs vs. a ramp, how far is the walk into the location from the parking lot. One of the things I miss the most is being spontaneous. My life consists of books, tv, movies, and music. Not much living if you ask me, no concerts, festivals, hikes, scuba diving or beach activities. I didn’t get to live the life I planned. I miss out on a lot but I tell myself it’s ok. It’s not ok!

I have a lot of less than emotions, feeling less than enough. I don’t want to be a burden or a bummer so I’ve learned to limit my time with others so they only see the surface that looks ok. My son and close friends know how to watch for signs when I’m not feeling well. The telltale signs like when I limp because of hip pain or unsteady gait when I get dizzy from palpitations.

I tell myself and others it’s ok. It’s not! Not only is life a challenge for me but it’s also challenging for my family. They say it’s ok too. It’s not ok!

Life is a struggle and I don’t want to admit the truth. I don’t want to be judged by others so I fake it as best I can. You know the saying fake it until you make it. Well, that’s my motto. I think there’s a lot of us that don’t let on about our problems, that tell ourselves everything is ok even when it’s not. It’s kind of a little white lie. It doesn’t hurt anyone. Besides, do we really need to divulge everything to everybody? Is it really lying when someone asks how I am and I respond with ok or good even though I’m feeling terrible? It’s easier to lie and say I’m ok than to let on that I’m not.

Every day is a challenge when you live with a chronic condition like lupus. I focus on what I can do. No sense in wallowing in the I can’t, or the past. In my mind, I’m healthy and can do anything but in reality, I have limitations. It’s not ok but I fake a smile and move on. I remind myself to be grateful for what I have and that things could always get worse. Maybe it’s not really a lie that I’m telling myself but it’s all a matter of perspective. Once again I tell myself it’s all going to be ok. Maybe I am good, I’m alive to enjoy another day.

Michele Palermo

Michele is a retired registered nurse who spent 15 years in Emergency Medicine. That's where she learned there's a fragility to life. Diagnosed with lupus, after going through a divorce, taught her to be a survivor instead of a victim. With her career shortened by illness she turned to books. She fell in love with the written word as a young child. To her, words convey emotion. Her new passion is writing. As an aspiring author, she hopes to inspire others on this roller coaster called life.

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