I remember the day as clear as yesterday. I remember the feeling – lost, hopeless, and petrified.
A few moments later my hands became stiff and I could no longer use them. I felt the beating of my heart like it was exploding through my chest. I was sitting at my desk at work when I had just heard moments ago, “Bianca, they did find something, you have lupus.” At that moment, my world shook and I felt like I could no longer breathe.
Instantly my coworkers crowded around me giving water through a straw, rubbing my extremities to try to keep my circulation going, and even checking my vitals. All I thought was that I was going to faint and wake up in the ER. Thankfully, with the help of coworkers I avoided the expensive visit to the ER and was given something to calm down and left.
At that moment, I frantically called my mom asking her, “What is lupus? What do I have?” She assured me that I was going to be OK. She said that now the doctors know what’s wrong, and once I get on the right medications, I would be all better. And finally, be “normal.”
I now had my answer. For the over 20 years I’ve been alive and I remember I have never felt good nor “normal.” At least I knew I wasn’t making my symptoms up. Many doctors I went to told me that it was just anxiety and that I was too young and I couldn’t be sick. Eventually you start to believe them.
I can remember when I was kid and all throughout my teenager years feeling like I wasn’t normal. I would miss school all the time, being sick, or my mom wouldn’t be able to get me out of bed come the morning. I always felt like I had been hit with a ton of bricks, bus, or even a train. I would try to keep up with all my friends; I just couldn’t. There was nothing I could do to be like them.
But I listened to my mom and believed her with my entire body and soul that I was finally going to feel better and finally be “normal,” now that I had my diagnosis.
Boy, I couldn’t have been more wrong. I missed work for weeks, on and off different medications. I began to have new symptoms and even adverse reactions to medications that were prescribed to me. There were so many more sleepless nights and pain that just wouldn’t go away.
My whole life wanting to know what was wrong, I had gotten the answer. I should have felt some sort of relief. Maybe, at ease. But I didn’t.
Now there were all these new rules to follow:
- “No, you can’t go in the sun.”
- “Oh, you can’t use that on your skin.”
- “It’s probably best you didn’t drink alcohol.”
- “Oh, you definitely can’t get pregnant on this medication.”
- “Exercise, but not too much.”
- “It seems that your body doesn’t digest gluten, so don’t eat that, ever again.”
- “Make sure you stay calm, because stress can make your lupus worse.”And the list goes on.
So, with all this pain, medications that the side effect of “sudden death” written on the package, and all these new rules that made me feel I belonged in a bubble.
But wait, this wasn’t a part of the plan… I had gotten married! We were supposed to be happy, start a family, travel, and have this whole exciting new life together! Wasn’t that point? Now, all of this felt like it was no longer possible.
Fast forwarding to today. I sadly can’t say that I am doing that much better. Each day is a search for “normal.” Most of the day I catch that I am frustrated with myself because of this. It seems that I have went ahead and raised the bar for myself.
I currently work full-time but feel like it won’t be this way for much longer. I wake up most mornings feeling like the world is on my shoulders and it takes all the energy I have to just get out the of the bed. I sometimes sit in bed wondering if I should even bother. Waking up in pain is never fun. Trying to put yourself together to face the outside world becomes a struggle. People see you but many don’t understand. I worry that some people don’t even believe me. There are times I can sleep eight hours and I feel as if I can’t even keep my eyes open or hold a conversation.
When at work brain fog can get so bad that I have to ask to customers to repeat themselves, which makes me feel so embarrassed. At one point in my life, I did this with no problem.
I had to hire someone to replace myself in the position I was doing. I couldn’t handle it anymore. Mentally this took a very large toll on me. I felt like a complete failure, feeling like I had to abandon what I was hired to do. But I had to let go of this position because I cannot travel for work like I used to nor could I handle a high stress level. I sit at this same desk today and feel as life is passing me by and I can no longer do the things that I once could. I even worry that my employer just pities me and that maybe I am no longer even worth it.
I’ve even tried to go on vacation for a sense of normalcy. This was an epic fail. I had to spend most of the time in the hotel because I couldn’t handle all the walking. My legs and feet began to swell and my knees felt like they were being crushed from the inside. Then getting a wheelchair when you’re in an airport, while everyone looks at you as if your faking it. Even better, when I don’t have makeup on, people look at my skin as if I was going to give them a contagious disease.
Each day that you’re in pain is a struggle to smile, to laugh, and remain positive.
Unfortunately, unless you experience a chronic illness, others might not understand.
Some days are worse than others. One day you can wake up with a new pain, new rash, or any new issue that scares the heck out of you! Those are the constant reminders that you are not the same. You look in the mirror and feel that you don’t even know who that person is anymore. Realizing that I am so much farther from “normal” than I’ve ever been.
I want nothing more than to feel better. I want my doctors to be helpful, understanding, and educate me about the part of the disease which affects me. To have more good days than bad. For those around me to understand, that autoimmune diseases are very much real! And they are terrible. I want to be “normal.” I wish there was a switch to make it all go away. But that doesn’t exist.
I must, we must, not give up. But realizing and accepting that maybe things are different, but keeping faith that one day things will get better. Not just for me but for all those who struggle with any illness.
And, it’s OK to be honest with yourself and those around you. To learn your boundaries and realize that this is going to be a learning experience. Always be forgiving of yourself. Being hard on yourself is only going to make things worse. Our bodies already fight themselves, there is no need to make it worse. I will fight this illness and find my strength to get up each time I get knocked down. Because now this is my new “normal.” And to be honest, I’m not even sure what “normal” really is.
You can also find this published https://themighty.com/2017/08/diagnosis-bringing-normalcy/