You’d never know it by watching Beloved sort out my meds, but he isn’t that type of doctor. He never wanted to go to med school; he is a little squeamish around blood, and medical Latin terms are not his favorite Latin words. Still, here he is.
I had assured Beloved that he wouldn’t have to be bothered by any of this stuff. I have gotten to know lupus well in all my years of living with this disease. I’m good at handling this all on my own and would happily carry on doing so.
Except Beloved wanted to help. He wants to be involved and to understand. It was hard to let him through that door and allow him to help, probably because I’ve spent so long managing it all independently. Not because I had to, but because I thought it was easier that way.
No one wants to be a burden. It took him learning those medical terms and being comfortable with needles and such for me to realize that it was my insistence at being independent that was the burden, not my illness.
So no, Beloved’s not that type of doctor, but he certainly isn’t far off from it when I need him to help me with lupus.
He peered over his glasses at me, his face creased with an incredulous look. You’d have thought I said something shocking or such rather than telling him I had lupus.
His reaction wasn’t what I had expected, but I guess me telling him I had a severe and chronic disease wasn’t what he expected either when I stuck my head in his door.
“I’m sorry,” he said, “I don’t know what to say.” I’ve heard that a million times before and gotten good at reassuring people they don’t need to say anything. If I choose to disclose my illness to someone, it isn’t for sympathy or such. I am sharing because I trust them and want them to understand that sometimes, I can’t do what I said I would.
One of the hardest things for me to accept about having lupus is that it means not always meeting commitments. I hate feeling unreliable, canceling at the last minute, and all the rest. Please know that if I do this, it’s not about you. Instead, it’s about an invisible illness that sometimes gets in the way of me doing what I want or being able to be there for you. Also, know that I am far more likely to be disappointed or hurt about having to duck out of something than you will be that I’ve done this.
The lady at the counter assured me that this particular brand of makeup would do the trick at hiding my rash. To be honest, if I didn’t have to do a video for an event, I was more than happy to allow my mask to hide part of my rash.
I’ve spent years trying to find ways to “mask” the lupus rash that loves to make grand appearances when I’d rather it not be present. Sure, some makeup works, but it doesn’t look natural or isn’t ideal.
Beloved tells me, I know he means it when he says it, that I am beautiful, but sometimes I don’t feel that way. Sometimes I feel like a broken girl trying to hide the glowing red rash across her cheeks while she tries to fit in with all the other teens.
While everyone else was dealing with regular teen issues, I navigated a world of strange symptoms that people didn’t see or understand. All I wanted was to be ‘normal’ enough to blend in.
It’s strange that lupus is, for the most part, an invisible illness, and here I am, trying to hide the elements you can see so I can still blend in.
I once spent a week posting signs and fliers for a missing person all over my favorite haunts. Yes, I know; I said my favorite haunts, and typically when someone goes missing, you post the fliers in the areas where the person likes to hang out.
You see, the missing person was me. I was the one who was missing, and I spent a week looking for myself. It probably sounds a bit nuts, so let me explain.
Shortly after being diagnosed with lupus, I immersed myself in learning everything I could about the disease. I wanted to know what I was up against and what I could do to help myself. I wanted to be as much of an expert on the illness as I could.
This is relatively normal behavior when people are newly diagnosed with a chronic illness. Knowledge is never a bad thing to have either. However, too much immersion can result in losing who you are at times. That is never a good thing.
So I set out my fliers and found myself near the end of the week. I was reading a book and enjoying a coffee. You see, I had been waiting for me to stop researching and come back to myself.
What’s a girl supposed to do when her body decides to destroy her from the inside out? What’s a girl supposed to do when it seems like the sun is about to kill her?
If you are this girl, you find sunscreen, shade and thankfully enjoy indoor activities. You plan your day around the sun’s cycle, and you embrace the soft tones of the sunrise and sunset.
If you are this girl, you learn what medications are vital and which ones do nothing for you. You understand what fuels your body’s self-destroying ways, and you avoid them as best you can.
If you are smart, not like this girl, you allow your friends to support you and help you. You have friends who know about the sun, the stupid immune system that you got. Your friends manage things that you don’t want to manage and remind you that there is so much to enjoy regardless of your wonky health system.
You take your life with lupus and realize that things are different, not bad, not great. They are just different, and you need to adapt. You also recognize that adapting is better when you do so with the love and support of your friends.
No one told me that getting a concrete diagnosis of a condition would be a mixed bag. I heard of the great relief people experience knowing what they have. I’ve read of the joy some people get in realizing there are ways to manage their symptoms. To be sure, I have experienced a bit of “thank heavens this has a name” and also “hey, if I can get this under control, things will be okay.”
No one told me about a diagnosis of lupus because I would also feel disappointed that there isn’t a cure. No one said that I would be angry or struggle with all the complications of understanding the illness and making choices that don’t always result in a win.
I had foolishly assumed that with a diagnosis, things would be a path to getting better. I mean, I knew that there would be bumps in the road, but oh my goodness, no one prepared me for how many challenges would happen in living with this.
However, despite all of this, what I want to tell you, is that it does get easier to manage. You learn about support, and you know the steps of the dance. It gets better, not perfect, but it does get better. Trust me.
The funny thing about lupus is that despite there being clinical tests and fairly common sets of symptoms, it still affects each person differently. Sure, we have some things in common, the exhaustion, the flares, the pain, and such.
What triggers reactions in us, what helps us to heal may be different. How we cope, live life, and manage our illness may vary as well. What holds us together is the fact we all have the same disease.
The funny thing about belonging to a group is that you suddenly feel like you have a place where people understand you and get what you are talking about. Still, at the same time, those experiences are also never identical.
The funny thing about lupus is that I cannot imagine my life without it any longer. I have tried to wish it away. I’ve hoped that medication would remove it, but chronic illness doesn’t work that way. I’ve learned to live with lupus, and somehow lupus seems a bit like an old friend.
Lupus has seen me at my worst, sometimes making me at my worst. Lupus has been there for the incredible moments too. Lupus has taught me how strong I can be and how to bring compassion to my interactions. Lupus has taught me so much, and it’s so funny to me that a chronic illness is why I know some of the people I know.
The table was overflowing with fresh produce. Tomatoes threatened to roll off the edge and onto the floor. Onions dangled dangerously on the far corner. Parsley wavered ever bravely half on and half off the table, and still Beloved added more items.
The market had been awash with produce. All different kinds were freshly in from the fields. Beloved had gone early, having heard from some locals that today would be the beginning of wondrous things to buy.
When you are like Beloved, you cannot resist any of the fresh produce. The unknown tempts you with its exotic flare while the familiar seduces you with favorite recipes and flavors. The fact is, you cannot resist the call of colorful and fresh fruits and vegetables.
If you are like Beloved, you can no more ignore the call of these items than you can stop breathing. You buy a few of these and a couple of those. You haggle over the price of this while you splurge on that. You fill your bags to nearly overflowing, and still, you must purchase items.
You bring your items home, gleefully anticipating the taste of wonderous reciepes. You do not heed the logic that comes with limited space. Why should you? You ignore the reality of being able to eat only so much food. You make it all, you sample it all, and forget the overflowing table.
The four-footed one ignored me as she explored the flowers. Sometimes she sticks her nose in a bloom as if she plans to inhale all of its sweet perfume. Other times, she gives a flower a bit of a taste with her tongue. Then there are the flowers she loves to roll around in and on. These are the flowers she was checking out when I told her to come back.
For the record, the four-footed one loves to roll on flowering herbs. She doesn’t care which herb it is; if it’s an herb and it’s in bloom, she’s there to enjoy it by getting down on it and releasing its scent into her fur.
There’s nothing wrong with this, other than if you happen to want or need the herbs to flower. This is the reason I had called her back to me. My neighbor likes to use the flowers of some of his herbs in his cooking. The four-footed one doesn’t care what my neighbor plans. The four-footed one only cares about crushing the flowers to add to her perfume collection.
She stopped eventually. She stopped because there was the distinctive buzz of a bee. Ever since a bee stung her, she has become skittish around them. Whenever she hears them, she runs away. This is why my neighbor’s flowering herbs were saved.
The four-footed one insisted on a long walk today—the type of walk that leads to new places to explore and new smells to take in. It is, of course, also the sort of trip that means someone will need to be carried at least part of the way home.
After our long walk and some time relaxing at home, we had to head to the local market for the evening meal. The four-footed one came with us because a trip to the market always means a treat of some sort. You see, little Miss Four-Feet is well-known in the market. Most of the vendors know her by name and sight. Almost all of them feel as if she needs a little something special for visiting with them.
A trip home resulted in more resting before eating. Later one, there was more strolling and more relaxing. The four-footed one easily partook of it all like a professional.
I should learn from the four-footed one, at least in the relaxing and resting aspects of life, especially since the four-footed one is a master at finding ways to relax regardless of where she is or what is going on around her.