I Have Lupus, Now What!? The Story Behind the Making of MereyGo- Round

“When you have an invisible disease, the sickness itself isn’t the biggest problem. Trying to explain it to other people is.”

I will come right out and say that this post will not be a sob story, rather like everything else it’s a part of my journey thus far, and I want to provide some insight into how I have decided to adapt to a positive lifestyle in order to be able to live my version of “My best life yet,” despite this life obstacle of Lupus.

I truly believe that you can overcome mostly anything in life, as long as you have the right mindset. If nothing more, I hope to relate to at least one person who may feel misunderstood or alone when facing one of life’s many obstacles.

My Diagnosis

I was diagnosed with Lupus back in 2012. Correction – I was “accidentally” diagnosed with Lupus in 2012.

After gaining the FRESHMAN “15,” well more like the freshman “45,” upon returning home for the summer, it was diet time. I went to a dietician who required you to get your blood taken. The results of the blood test were an unusually low white blood count as well as heightened liver enzymes — to which my mother thought was because of too much drinking freshman year. Well mom, you were wrong—the booze was fine, the Lupus was not.

Honestly, back then I took the diagnosis very lightly as it wasn’t really affecting me, and I was in college. Like many of my peers, I wasn’t so focused on my health at the time. But I quickly learned that this was not something to ignore. Though invisible to others, it was there and it was very real.

What is Lupus?

Okay actually let’s go even more basic, what is an autoimmune disease? An autoimmune disease is a condition in which your immune system mistakenly attacks your body. The immune system normally guards against germs like bacteria and viruses. When it senses these foreign invaders, it sends out an army of fighter cells to attack them. Lupus is a long-term autoimmune disease in which the body’s immune system becomes hyperactive and attacks normal, healthy tissue. Symptoms include inflammation, swelling, and damage to the joints, skin, kidneys, blood, heart, and lungs.

For me personally what I experience most is inflammation, particularly in my fingers, knees and feet. At one point my finger was so swollen I had to have a ring removed—shout out to the NYPD!!! No, seriously. The doctor had to call them in after they couldn’t get it off. They told me if we waited ten more minutes I might not have a finger, OH THE DRAMA! On the bonus side, there is a market for retractable rings, and hey, maybe down the line I will have my own line!!!!

While Lupus has no clear path and symptoms can strike at any time, they too can also change over time. Recently what I have been experiencing in addition to the inflammation/swelling is extreme fatigue.

Fatigue Is Real

I will be the first to say that when I learned about all the potential symptoms stemming from Lupus, I saw “extreme fatigue” and I honestly thought it was an “excuse” or “laziness”. In my head I thought, sure maybe your more tired than others may be, but if you really want to, you get yourself up and going.

But for the record, extreme fatigue is very REAL, very debilitating, and overwhelming at the same time, because while your mind is still wanting to go a million miles an hour, sometimes physically you can’t, and this can lead to anxiety or feelings of great unproductivity.

Aside from how it makes me feel, something else I had difficulty with was how to explain this to people who did not understand.

Understanding “What Other People Think of You is None of Your Business.”

Understanding I live a fast-pace lifestyle, I will take ownership that by burning the candle at both ends, this definitely contributes to flare ups of symptoms and I need to do a better job of listening to my body in knowing when to slow down. This is something I have been actively working on but definitely a work in progress!

I find the most difficult thing is that I have the most severe or intense case of FOMO known to man. For example, just the other day my dad actually spoke of my FOMO like he was talking about an illness:

Dad: So and So…they have that thing that you got.
Me: Lupus? Anxiety?
Dad: NO, the thing where you have to be everywhere or else you’re sad!
Me: FOMO!!!!!!!!!!!!!!!

SO yeah, my mind is always on the go and wants to be busy. HELLO, MereyGo-Round. Sometimes, however, my body can’t keep up.

I would say that it is very challenging, feeling like your body is failing you. What I have begun to realize however, is that my body isn’t failing me, I am failing my body when I allow myself to be consumed by stress or when I am putting too much strain on it by burning the candle at both ends.

Explaining

“Stop explaining yourself to other people. You owe no one any explanation of what you do. Your life is yours, not theirs.”

Something I have learned along my journey (and not just relating to Lupus) is that you don’t have to explain yourself to people. Those who love you know the truth and that’s all that matters. As long as you’re being honest and truthful with yourself that is all that counts.

OKAY, while all of that is good, we are all HUMAN and we all care what others think. Unfortunately, I believe that I will always care, or account for other people’s opinions. The main difference is that I no longer allow them to change what I do or how I think.

As I mentioned above, one of the symptoms of Lupus is extreme fatigue, and I will never forget the first time I was truly feeling fatigued to the point that I requested the day off from work. I remember that I was going to ask to WFH, but I felt so awful that this wasn’t even an option for me.

I was so scared and anxious leading up to asking for a sick day. I remember it was the first time I acknowledged that it was Lupus to my manager. Honestly, I hated using that as an excuse even though it was the truth. I didn’t want to be a victim.

What was worse was a few people texted me to ask me if I was hungover and if that was why I was out of work. I remember thinking that my worst fear came true, people either thought I was lazy and didn’t want to come in or that I was hungover.

For the record, understanding that you may not want to hear that my worst fear came true, I’m making the point that I truly believe it was because people didn’t understand what I was going through. I remember being so devastated by this. I spoke to my sister and she basically said to be honest with myself— meaning if I was truly sick, which I was, and I know this to be true, which I did, then that was all that mattered.

What I realized was that my friends weren’t poking fun at me intentionally. They just didn’t know. What I decided to do instead was explain that I have Lupus and that sometimes symptoms such as fatigue or inflammation can appear. I received a very warm response. Truly, while not everyone in the world comes from a place of good, I choose to believe that most people get misinterpreted because they don’t have all the facts. It’s important to try to practice empathy and to treat people kindly, because you never know what the whole story is. Also, be honest about what you’re going through so that people understand. (People are nosey, they want to know. Lol.)

Mind Over Matter

If everything I’ve said hasn’t yet done it for you, here’s an example of how you can turn a negative into a positive, or at least this is what I do.

Scenario:
“I have Lupus. I am young, and sometimes my mind is limitless but my body has limits.”

Negative Response: I am life’s victim and it’s incredibly unfair that I have an illness that will never go away, and that can show up at any time, poor me.

Positive Response: Okay Merey, so we know how you love to talk and love having everyone know your business. Everyone knows you have Lupus but think about how many people are silent sufferers. What can YOU do to empower them to live their best and most positive life, despite any of the hardships?!?

New Normal

I have had points in my life where the pain is great and the swelling is beyond uncomfortable. In those hard moments, sometimes I say I just want to be “normal” but the truth is, this is the new normal for me. Also there is no “normal” in life. We all go through our own set of obstacles and this was just something along my path, which I am taking control of. Truthfully speaking, I feel like it’s almost a blessing, as it has allowed me to open my eyes more to what others experience in life. It also allowed me to work on becoming a much more positive person and to the creation of  MereyGo-Round. I am able to use my voice in an effort to try to inspire others to live their best lives through adopting a positive lifestyle. Yeah, I’m pretty lucky if you ask me.

Vibes
Xo,