I am going on 6 years since I’ve been diagnosed with lupus; 5 years since we started fundraising, and this year I wanna focus on the intersection of my mental health and lupus. To be honest, lupus spoke voluuummes to me as far as what my life is worth. And I would dare to say that it’s done that to many other lupus warriors. They say that lupus looks different on each person, but I think if there’s one consistent thread, it’s that at one point or another, we’ve all felt trapped.
If you’ve read my story before you probably know by now that the year prior to getting diagnosed with lupus I was battling with an intense season of depression. It was a scary scary time, and I honestly wasn’t sure if I’d make it out alive – but I did! And praise God for it! I fought, and I fought hard. I had my closest loved ones constantly assuring me of their love; I spent time with different therapists, different psychiatrists, went through different kinds of treatment. And after almost a year, I finally felt like I was in a better place. I felt like I had made it to “the other side,” the side of light, hope, and life. I felt like I made it through the storm, and I was so ready to embrace it. I was scared, but I was ready. I moved home with all the plans of starting fresh. I actually just recently read the blog I wrote when I turned 26 on Sept. 28, 2016. I talked about how happy I was to be 26 and no longer 25. I was so happy to leave all that pain and darkness behind and just be new. And to be honest, when I read that I couldn’t help but cry. Because all I was thinking was, “ohh girl, you have no idea that just a week from now your life is gonna change and it’s gonna be so.much.harder.” Because what came after my birthday, just one week later on Oct 4, 2016, I went to the hospital, only to stay several nights, running a million tests, getting no answers, and getting worse everyday. Laying in that bed, I thought, “man, all those nights feeling tortured by my depression, I used to think ‘a physical illness would be way easier than this,’ but nope, this is way way worse.” I had never felt so helpless, so at the mercy of God. I could barely keep my eyes open, and when I did all I saw were worried faces and teary eyes. I thought, “this is it, this is how it would happen.” And to be honest, I begged. I begged the Lord, “Lord in your mercy, please, please let this be it,” because I couldn’t imagine living the rest of my life like that - battling both mental health and this physical illness which we knew nothing about at that point. I couldn’t imagine bearing both weights. I had fought so hard mentally, emotionally, spiritually just to make it to 26, and I couldn’t imagine surviving yet another endless, uphill battle.
But I tried. I tried to keep hope alive. I made sure to have worship music playing whenever I could; I clung tight to my rosary, especially during procedures; I’d turn to the little electric candle we had lit in my little closet whenever I felt scared and sipped on Lourdes water whenever I felt anxious. I thought of the Saints and tried to imitate them in their own periods of illness. And eventually, yeah, we got the diagnosis - lupus nephritis. I got put on a bunch of strong meds, which did help me start feeling better; I got hooked up with the best medical team I could ask for. Things didn’t get better right away but slowly but sure, they did. I gained the strength to walk again, eat again; I started going on trips again; I even got a job at a school where I worked with my best friends. Things were moving right along smoothly. And to be honest, I’m pretty sure I have the best case scenario because I don’t think most lupus stories go this way. I think lupus warriors are often in and out of the hospital, constantly having to advocate for themselves because their doctors don’t care or don’t get it, always playing trial and error with their meds, and unable to hold a job because of the chronic pain and fatigue. I am extreeeemely blessed when it comes to living day to day with lupus and managing symptoms. My battle with lupus is more of its impact on my self-worth, like I was saying before.
Because yeah, my life has been more or less smooth sailing compared to many other lupus warriors, but what lupus spoke to me is that “you are not meant for a good life.” Because prior to lupus, I was so hopeful! Then boom, out of freaking nowhere this random ass disease invades and takes over my life. And with that, doors to lifelong dreams closed. It was like I was so proud for surviving 2015/2016, then I was met with so many doors closing one after another. And not only that but everrrrything freaked us out. I felt like I was walking through a minefield with my health, never sure what was lupus or what was just a regular cold or bruise or tiredness. But it was also like, “well I’m severely immunocompromised, so is this a result of that too? And if it’s lupus, does that mean I’m going back to the hospital?” Lupus gave me and my family a level of anxiety where we couldn’t help but catastrophize every.little.thing - sipon, sleeping in a little, not being hungry, upset stomach, hair on the drain after showering, a tiny rash on my arm - literally everything freaked us out, so scared we’d have to go back to the hospital and relive that hell. Do you know what that’s called? That’s a freaking trauma response! Lupus had us/me living in the shadow of my trauma, forever waiting for the other shoe to drop.
What gets me the most was the randomness of lupus because what that tells me is that “it doesn’t matter how good your life is, lupus can hit and hit hard any.time.” I never felt safe, never felt like I could let my guard down, even if things were good. And that’s what I mean by feeling trapped. I can’t tell you how many times I have prayed to the Lord, “what is even the point? I’m gonna get sick anyway, so who cares?” So many times I’d leave my doctor’s office and pray those words, no matter if it was a good appointment or a challenging one. Every doctor's appointment, every lab visit, every additional specialist I have to see just reminds me that I have lupus, and remembering that I have lupus just reminds me that going back to the hospital and almost dying will always be an option. So yeah, I may not battle with intense symptoms on a daily basis (even though I do have my moments), but the impact lupus has had on my mental health, my self-talk is by far the hardest part. It’s trauma. And I have asked God over and over and over again why He allowed me to survive, if this was the life I was gonna live? And to be honest, I still don’t know.
BUT unbeknownst to me, the Lord has been at work in bringing healing to both my mental and physical health, and I think this is where we see the true intersection of my lupus and depression. I went to a retreat last year where the Lord met me in my pain in the most rawest, most intimate, most real way I had ever experienced before. He indeed spoke voluuummes over me that countered so many of the lies I believed about my self-worth, but what He mostly spoke was that it’s not so much about finding out “why” I had to go through all that. It’s not even about finding some big life lesson to, in a sense, make it all worth it. No, what He spoke was, “give it to Me.” I kept feeling like He was saying, “this is not for you to see anymore, I gotchu, let’s go,” and He’d carry me away from the wreckage of my pain and bring me to a place of joy. And I’ve been sitting with that since then, like “What?? How??” but it’s been this constant assurance in my heart. And you know what happened that monday, the very next day I got back from retreat? I found out my kidneys were in remission for lupus AND I got my final confirmation letter and I committed to Saint Mary’s for grad school to get a masters in counseling! Hahah like what??? And since then, things have just been falling into place. They haven’t been easy, but without even trying things have been provided for me. Just like out of the generosity of others or things I didn’t realize I qualified for, they’d just come out of nowhere.
But my trauma would still tell me it’s not real. It’s not possible for good things to be in my life, it’s not possible that I could have a good life or be worthy of a good life. And so I’d resist and close my eyes. I’d brood and ruminate. I’d self-sabotage because history tells me good things don’t happen in my life, the other shoe can drop at any moment. History tells me to keep my guard up, never believe it. And there were a few weeks recently I was riding this high because I had just completed my first half marathon race. I was feeling good and confident, even amidst challenges. But then my trauma and self-sabotage started to kick in again, and I’d just look for things to find wrong with my life, I’d look for things that could possibly be God letting me down again. I’d almost look for things to worry about because there’s no way things could be this good for me. And I started to ask Him, “are You ever on my side?” because just the fact that I couldn’t trust the goodness of my own life was annoying and I didn’t understand why I had to live in that trauma anymore. Around that time I had to get my labs done in preparation for my upcoming appointment. I had actually requested an earlier appointment because I was having these symptoms that wouldn’t let up, so I was already anxious waiting for my lab results because I was sure it was gonna show a flare. Luckily, I got the results the very next day (which never happens) but so many of them looked different! Like notes and numbers I had nevvver seen before. I was freaking tf out. I made the mistake of googling what they could mean, and of course that only made me freak out more. I just kept thinking “I knew it, this was all too good to be true, I knew it’d happen eventually.” I started thinking of all the things I could have been doing wrong to put me in that position. But at the same time it also didn’t make sense to me because I knew I was feeling good. Physically, my energy was good; mentally I had never felt so stable in so long. It didn’t make sense, and yet I erred on the side that things were about to be a shit show. I finally met with my doctor, and I’m frantic. I’m like “ okayyy I have a million questions about my labs!” “your labs?! They’re good!” I said, “what?? Really?? Because this…” and she said that’s exactly what we wanna see! I had never seen labs like this because my labs have never been this good hahah. I left my doctor’s office in tears because I just couldn’t believe it, especially after all my complaining to the Lord, “are You ever on my side?” All I could hear from Him was “I told you, I gotchu you!”
And that is honestly where I am right now. Since last year, I've been working on just simply (and finally) accepting that this happened to me, and I don’t need to come up with some big life lesson before I move forward. I’m leaning into God’s promise, no matter how scary and foreign it may be, that He’s got me and that I’m worthy of good things. I’m leaning in. And that’s it. And the more I surrender my pain to Him, the more I lean into His promises, the freer my mind is because I’m no longer preoccupied with the anxious “what if” because no matter what happens, the Lord’s got me. And idk, I definitely still live cautiously because it wouldn’t be smart not to, but I don’t live in the fear I used to live in when this all started 6 years ago. There’s a freedom. And you know happens when there’s freedom and peace in my mental health? My lupus goes quiet :) It absolutely amazes me the connection between our mind and our body, but I am freaking living proof of it.
So in honor of May being lupus awareness month AND mental health awareness month, this is my story about the silent side of lupus I don’t think a lot of people talk about. The fear and anxiety it places in you, the certain level of hopelessness that’s hard to shake. I dedicate this to all you, lupus warriors! You got this! We got this <3
Laus Deo Mariaque - Glory to God through Mary!