The year of two thousand and nineteen is coming to an end. As I spend time reflecting on the passing year, there are a few observations that stand out as recurring themes woven throughout each passing season, each holiday celebrated, each moment of love and loss. Each day learning and living with lupus.
Let’s be real - with managing a chronic illness, like lupus, every year is an accomplishment. So whatever may or may not of happened this past year, pat yourself on the back, because you survived. If you are reading this, you are still alive, and able to tell the tale of every peak and valley of 2019. And though the past is gone (like my See’s candies from Christmas) there are somethings that I “gleaned” from my lupus journey in 2019 that I felt were worth imparting to you - before we ring in the New Year, and 2019 becomes a distant blip on the radar of life.
Here’s my top five:
1. The Truth Is Incontrovertible: Winston Churchill once said, “The truth is incontrovertible, malice may attack it, ignorance my derail it, but in the end...there it is.” Did you spend a lot of energy defending your truth in 2019? I know I had my moments. Why do we do this? Well, like most people living with chronic illness, we just want to be understood. We want to be accepted, validated, and loved...just as we are. Trying to explain that lupus is the unreliable party, not you, can be so tiring, but, you try and try and try to enlighten. Often, to no avail. However, I have decided (and I hope you will too), that in 2020 I will see things a little more clearly (see what I did there) and simply live my truth. Not force it on others, not try and make people understand. Just live in it. If others don’t fully understand what I’m going through...then its on them, not me. On the flip side, I will try and show grace to others, because I am pretty sure I don’t know what it is like to walk in their shoes either. Harper Lee, who wrote To Kill A Mockingbird, said it this way, “You never really understand a person until you consider things from his point of view... Until you climb inside of his skin and walk around in it.”
2. It’s Not Enough to Just Survive: Yes, some days you just plain survive. Some days you just make it through by the skin of your teeth. I get it. But, there comes a point - when it is time to start living. I mean, really living. I mean, finding joy, and passions, and things that make you laugh, and beauty, and travel, and all of it. Because you deserve more than being in “survival mode” all the time. You deserve to make the most of the finite days you have on this planet. So live...as much as you can. Who says that just because you have lupus you have to be a professional patient? Who says you have to hand over the reigns of what you look like and how you act to lupus. You don’t. So don’t. You’ve done enough surviving, it’s time to live.
3. Let Them In: Lupus is not a sprint, but a long marathon of hurdles, with little time of rest. Most of the time, you forge through this race solo. Partly out of instinct, partly out of ego. “I’ve got this. I don’t need anyone’s help. I can do this on my own.” I can’t tell you how many times those words have echoed through the lofty chambers of my mind. However, I have discovered that people want to be there for you. Yes. They do. You just need to remind them that there is a hand that wants to be held. When you have been hospitalized, are having an important doctor’s visit, or having treatment – let them in. People are not mind-readers. And on the flip side, don’t feel like you “deserve” to be alone in this because you don’t want to burden someone else. Sending a quick text to someone important will save your spirit! People’s prayers, well wishes, and visits are incredibly uplifting, even when you had to remind them about whatever is going on.
4. We Conquer By Continuing: Listen, the last time you checked your address, I don’t think it said you lived on “Easy Street” - so let’s just be real. Your life will be hard, it will get messy at times, you will have set backs, and valleys to traverse. But don’t you dare give up, because, as my soul sister, Helen Keller said, “The marvelous richness of human experience would lose something of rewarding joy if there were no limitations to overcome. The hilltop hour would not be half as beautiful if there were no dark valleys to traverse.” The only way to achieve to not let lupus get the better of you is to continue living. You conquer by continuing.
5. Rock What You’ve Got: Have confidence in what you’ve got today. Don’t wait to live until you lost that 15-20 pounds of prednisone weight. Don’t wait to see your friends until your rash is gone or your hair has grown back. Don’t give up on yourself if you are experiencing a temporary lupus set back. Rock what you’ve got. Show yourself some love. Right now, in this moment. Stop looking at that picture of yourself from high school, or college, or before baby thinking that is the “real you” that you need to get back to. Love yourself, exactly how you are today. You can have lupus and be a confident, beautiful, sexy, lushish, funny, charming, person. Rock it.
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright 2019.