If you were face-to-face with lupus, what would you say? #DearLupus
Let me first start off by saying, we are not friends. You have been hanging around for a long time in my life, but let’s consider the saying “less is more.”
I guess I should be thankful that, finally, after years of random symptoms & sicknesses, I know who you are to me now. I don’t know, however, why you have embedded yourself within my life with the plan on staying here forever.
As strong as I feel that I am and as much as I want to say that this disease doesn’t “own” me, let’s be honest. For nine long months and most likely years longer than that, I have been fighting to manage lupus in my life. This means countless hours of treatments, medications, symptoms, diagnoses, physical and mental pain, and the wish to cover my head and sleep forever.
When I finally break down and tell someone that I have lupus, nine times out of ten they say, “what is lupus?” I want to be able to rattle off an easy answer, but let’s face it, nothing about lupus is easy, even explaining it. I mean come on, how do you explain that no two people have the same symptoms and treatments, and that from what I’ve seen from all of my 6+ doctors (that I also have seen more than my family and friends in the last nine months), is that it’s a guessing game. You can read six different articles regarding lupus and very few are consistent. It’s not because we do not have diligent doctors, researchers, etc., it’s because this disease is such a mystery, and there is so much more we haven’t even tapped into yet. It is very true that more research needs to be completed, and we need the money to be able to do that.
How do I tell my co-workers and my boss that I (again) have another random symptom of this disease, and (again) I need to stay in bed, get my rest, not have any stress (that’s always fun to say out loud), and learn how to manage this in my life forever.
Lupus, if you want to know the worst adjective I can think of right now to describe our relationship, it’s “embarrassing”. That might surprise people, but it is embarrassing to have to explain another random fact or symptom that I’m dealing with. From the constant red face rash along my cheeks and nose that I like to pretend is natural rosy makeup-free cheeks, to the almost passing out from shortness of breath and dizziness when I take one flight of stairs going to my next meeting, to the needle holes and bruises along my arms from weekly treatments, swearing I’m not a drug addict, and my favorite symptom, the swollen fingers, toes, knees, and my stomach, making me feel like I’m the Incredible Hulk and all of my clothes and jewelry will be busting off of me momentarily. If I had a dollar for every time I said “I don’t feel good,” “I’m exhausted,” “I have a headache,” I’d be a billionaire for sure. It’s almost like the sniffling, sneezing, stuffy head, need sleep deal, but a little bit worse.
The hardest part is the “How do you feel?” questions. I hate having to say “crappy, bad, sucky, miserable, etc.” so I say “fine” and “I’m okay.” When I get the texts from my close friends who check in on me weekly, I hate that our conversation shifts immediately to my health, and I’m always embarrassed to tell them about the “new” symptom I am currently dealing with. How can they not be saying “Jeez it’s always something with Tina.” I mean, it is ALWAYS something with me now.
One thing I want to make clear though, is no matter how hard you’ve tried to take me away from my family and friends, it will never work. One thing that I’ve realized over the last few months, is that my bond to my family and my friends is unbreakable. Simple as that.
At 44 years old, I feel much older most of the time. How do I deal? Well to be honest, I put up a wall. I don’t let myself go to that dark place where I will undoubtedly cry for days. I guess I just fight…daily. I fight to be Tina, to be the badass I’ve always been. To be the mom, wife, daughter, sister, aunt, friend, and co-worker that I’ve always been to the people who love me. I don’t always win, but I will never stop fighting.
Lupus, I will never want you to be in my life. If you insist on staying, there will be ground rules. I will be taking this part of my life back, and you will answer to me. I will get to the point of managing this disease. I will get to the point of feeling my age again. I will not let this beat me. I will be the badass again that I used to be.
Lupus sucks! That is all.
I made a video of my story and how Lupus has affected me. Thank you to my friends and family for helping carry me through with prayers and encourgargement when I need it.
In my life now, you are neither friend nor foe, you are simply a fact. Yes, I curse at you sometimes, but that is also occasionally true about other facts in my life. Do you see? You are only a part of my life.
If I could change this fact for those around me whose lives have been affected by you, I would. They are just amazing support. I know, however, that you cannot make me feel guilty for this. It is a regrettable fact, but still a fact.
Here is what I have come to know: you are not just one giant, chronic, overwhelming illness. You are really no better nor worse than any other chronic illness, and need to be dealt with and managed thoughtfully over a period of time, like a child. This is as with any other illness.
Many people have pleurisy, pulmonary emboli, deep vein blood clots, congestive heart failure, grand mal seizure, a difficult pregnancy, blood abnormalities, kidney disease, and are treated with chemotherapy.
Many people have peripheral neuropathy; disfigured, arthritic fingers; poor stamina and/or fatigue so severe it feels like the “real” flu; severe sun sensitivity; joint pain; wounds that ulcerate; carpal tunnel; multiple joint replacements; and spine fusions.
Many people have GI problems, diverticulosis, bleeding ulcers, frequent urinary tract infections, hernias, cataracts, migraines and serious depression.
OK - maybe not too many people have or have had all of these things, but, Lupus, do not feel superior. Yes, if we were in a poker game, I would have folded long ago. Ultimately, however, I know that you are bluffing.
Since you are not a friend, I do not carry you in my heart or mind or spirit. I have good people and experiences that take those spaces. You are not a foe of mine, because I try not to engage in a battle with you; you should know, however, that I am SO, SO grateful for the researchers, for the LFA and other lupus advocates, for my doctors and supporters that ARE fighting against you head on. They will win.
For now, for me - Lupus, you are only a series of facts.
Alice Nixon Burress
I’ve been fighting Lupus for 15 years officially, but undiagnosed for years longer. We estimate it’s actually been 26 years total. This disease took a young, vibrant young woman who loved her job & had endless energy, to bring permanently disabled & homebound. Despite everything I’ve lost from Lupus, I’m still a Mom, which is all that I want to be, & am newly engaged to my second chance at love! I’ve learned one thing the most: every day is a gift. Make the most of it. You can find me on G+, spreading Lupus Awareness around the world.
Alyssa Logan, MO
You’ve taken a lot from me.
You took away a normal childhood.
I can’t prove I was sick that long…
But I’ve always been sick and tired.
It was a long time before I realized that there may be something wrong with me.
I was 13 when my first visible symptom started.
I didn’t know that the tiredness, headaches, stomach aches, and pain were all related.
It took awhile to accept something was wrong with me.
I thought you took everything from me…
But you really set me on my path.
You showed me I was stronger than I knew.
You gave me confidence I didn’t have before.
You didn’t take away my chance at a family, children, and a career…
You just made me find a new path. I had to find a new me, and make a new plan.
You will not win.
Why are you such a mystery?
You have taken a loved one from me.
It all happened in a blur.
You were a bad day I don’t want to remember.
Lupus you have an interesting way of doing things.
You teach us about life in one big bang.
You make us feel hurt and pain,
But, what are you really trying to gain?
You are a bit scary.
You have no rules, you state that quite clearly
You hide behind what makes people shine.
But you never leave, putting lives on the line.
Where did you come from and why are you here?
Was it the choices we made here and there?
Just know, your timing is never right,
And you hang on to us for dear life.
Don’t think that you will win at this game.
This is our life and your existence seems quite lame.
We learn to fight to outsmart you,
We won’t give up; we know your weaknesses too!
You treat lives as your battlefield.
Leaving us hopeless and tired as you break down our shield.
Please stop with all this fighting,
We no longer want to be afraid of dying.
You should know we hate you.
You’re not accepted here, but we make do
We choose to speak to you because you are wrong
Over time, a cure will be found because we are strong
We make a stand!
Our life will go on for which you are band!
We’ll learn from your lessons,
And we’ll fight by celebrating our blessings.
This was never about you no matter how you evolve.
A day will come when your mystery will be solved!
We do all this for the ones you touched and we love;
We continue to live for them whether they are here or above!