My Story: Lupus

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I really struggled with whether or not I should write such a personal post on here because I had really intended for this to be a space strictly for reviews/makeup/fashion/lifestyle related type thing. Sometimes people like to keep it private and personal, totally cool. I felt that way at some point too. But I hope to reach out. Hear. Be heard. Whatever it is, I felt like I had to write about it.
The past month and a half has been very difficult for me. I’ve been grasping onto every little sign of hope and positivity in all this. This being learning and accepting that I’ve been diagnosed with lupus. What is lupus? A quick google search will give you a one sentence description, but extensive research will tell you a lot more – it’s also known as “Disease with 1000 faces”, affecting individuals in many different ways.

When I think of Lupus, I think of:

A. a chronic, non curable, autoimmune, symptom-management illness

B. possibly life threatening/risks of organ failure

C. the possibility of having to use heavy duty medications (corticosteroids, immunosuppressants, chemotherapy, etc), or be on life-long maintenance medications

Basically everything that no one wants inflicted upon them.

I’m an over-thinker. I like to be a little too well informed about the consequences of every possibility in any given situation. Anything “chronic”, “symptom-management”, and “autoimmune” has always struck me as terrible. Perhaps it is because these words are often related to the big, bad, scary illnesses. I always had a soft spot for those suffering with chronic illnesses. It’s tough, ya know? I could never imagine being in that position. Yet here I am.

Now you would think working in the mental health field would mean I am 100% equipped with a toolbox of coping skills & expertise for dealing with any kind of emotional dysregulation one faces in life. NAH. Shit just got real. I am actually a chicken, yo! HOLD ME! I bawled, I laid in bed, I moped, I looked up prognosis & morbidity rates, looked up comorbidities I might end up developing, and continued bawling. I felt so sorry for myself. After all, early this year, I thought I was experiencing alopecia from a product I used. I still have this bald spot and believe me when I say that this sista ain’t shy about expanding her horizons. It’s pretty damn massive now. Several months later, I thought I had a stubborn mosquito bite on my face that was not going away. Which turned into multiple raised, purple/red rashes concentrated on the malar region of my face and up my nose. Then I started getting a fever. And losing weight. I had absolutely no appetite, I struggled to get out of bed, and couldn’t keep my eyes open for longer than a couple hours at a time. It didn’t take me a long to put all the symptoms together and come up with a diagnosis for myself via the internet… it sounded a lot like Lupus. I panicked. I read several articles & watched countless videos of people diagnosed with Lupus talking about their experience. I googled images of all kinds of rashes and compared mine to them. I looked up every kind of bug bite image hoping that mine looked remotely close to any of those instead. When my physiotherapist asked me what was going on with the rashes on my face, I cried. I kept telling myself that this disease does not exist in my family history and it would be odd for it to present itself now. Not when I was 23. Not when I’ve been saving and actively looking to buy my first property. Not when I’ve just started my career. Not when I have big dreams, plans, and an agenda full of things to fulfill, see, and experience. Not when I’ve already been through a million dollar workup being poked and prodded last year over a lymphoma scare. Not when I’m just starting to get better from a recent car accident. Not when I had a trip booked for October that I was definitely going to go on no matter what happens, even if I could barely lift a finger… Whiiiiiiiiich… I ended up having to cancel for the sake of my health. I was devastated. Despite my serology and clinical symptoms being in line with lupus, my biopsy came back suggesting otherwise. There was a lot of back and forth with trying to figure out the right diagnosis. It led to an insane amount of anxiety for me, on top of feeling extremely self conscious of the way I looked with the face rashes and hair loss. I didn’t wanna see anyone or be seen. I had so many sleepless nights thinking about what this meant for my future and my lifestyle moving forward. So dramatic. I know.

BUT…. this is my reality. I have lupus. I’m 23. I’m sick. I’m not going anywhere any time soon. A lot of things I wanted for myself have been put on hold. It fucking sucks. At some point I spent a lot of time thinking about what might have triggered it and how it could have went differently. Could I have handled my stress better around the time I flared up? Was it something I might have done that set my body off? Was it a virus that I might have contracted before that put me at a higher risk of developing this? Was it all the antibiotics I had to take last year when I was really sick? I lead a low key lifestyle and I just really couldn’t understand why I ended up getting this diagnosis, it felt unfair. I had a hard time trying to take a step back and looking at this differently. But when you muster the courage to do it, you gain moments of clarity. My clarity came from accepting this reality, and when I did, *cue tsunami of compassion from friends and family flooding in*. Just like that. The amount of support and love I’ve received reminds me that I really ain’t got it that bad. After all, how bad could it be when you’re feeling shitty but have the best kind of love cushioning you all around, softening the blow of everything, if just a little bit? I could not be any more grateful to be able to count my blessings at a time like this.

I’ve also been doing a lot of reflection and growing the past month. It’s always interesting to look at how you choose to thrive when you’re thrown into the unknown and have no control over the things happening to you. I just turned 24 over the weekend, rashes still on my face and a growing bald patch on my head. I was supposed to leave for Iceland tomorrow, but instead I’m filing for a claim in hopes to get a refund for my ticket. I didn’t ring in 24 feeling 100% better, but my heart was settled & happy, and I felt completely confident in my own skin. Chris has played a huge role in nourishing everything that was left of my self esteem in the looks department the past month and a half… I was hesitant to go out to public places or see other people, but he’s filled me with confidence and provided me with so much reassurance in myself, always reminding me that we ‘do this together’. There is something incredibly special about having your significant other being able to make you feel that way when you feel like you’re at the bottom. It’s nice. My family has been super great, always rearranging their own schedules around ┬ámy appointments, checking in on me throughout the day and doing what they always do… being my giant safety net. My friends listen, talk to me, give me insight, and comfort me. Wigmund has been by my side at all times that we are together and now we both have attachment issues… he won’t let me pee alone and I feel a lump in my throat when I can’t take him out with me. I’m choosing to do some things differently, one small step at a time to manage this illness. I’ve been working real hard at managing stress/anxiety and being confident in my decisions regarding my health. I’m open to & would love to hear from anyone who has something to offer about anything, from tips and tricks with sticking to *mostly* an inflammatory diet, to your experience with how you manage difficult times.

To end this post, I wanted to share something I came across that really resonated with me:

‘If we can realize that life is always happening for us, not to us, all the pain and suffering disappears’.

Thanks for reading.

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