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Emily’s Story (Lupus)

Purple RibbonMy family, my friends, doctors, and even strangers, they have all seen my pain. I questioned the other day how many of them actually know what it’s like to live with Lupus. I thought about it and in all honesty, I don’t expect anyone to know what it’s like, I don’t think anyone can understand what it’s like unless that is, you are actually living with it. But I also questioned, how many of the people that see my pain actually know where it’s coming from, if they even know what Lupus is. So I asked. I asked my mom first, and she knew exactly what it was – an autoimmune disease, that instead of your immune system helping your body, it attacks it. Other answers varied from it’s a type of cancer to it’s just a disease.

My definition of Lupus is much more than theirs. You see, let me take you into my reality. My diagnosis was in March 2009. I was in fifth grade. I didn’t care when I found out, mainly because I did not have the slightest clue of what Lupus was. I don’t remember much of what it was like, just rashes all over; my family was very supportive. After the diagnosis, I just had daily medications and frequent appointments.

I’m going to fast forward to around the end of sixth grade, when Dr. Berry specifically told me that my kidneys were on fire. I was living in Texas at this time. I have to say, the next three years following were horrible for me. I was put on Cytoxan, other words for you, chemotherapy. The dosages started off weekly, which sucked because once I got one dosage, I would feel nauseous for almost a week, and then I would just have to get my next one (so never ending nausea I guess you can say, or simply just no break from it). Because of the chemo I started to always get this smell or flavor in my mouth, it reminded me of a key. Now every time I’m near hospital food, it reminds me of that key flavor and it sickens me. I refuse to eat hospital food to this day.

Along with chemotherapy, I was also put on a medication, Lupron. This medication was to protect my hormones from the chemo. This medication also stopped most signs of puberty. I want to now go to eighth grade, back in New York. This year was included in those horrible three years for me. When I think of eighth grade, I think of being bullied everyday because that is exactly what happened, no exaggeration. I was bullied for lupus purposes or lupus effects, but the people who bullied me didn’t know that because at this time, I liked to keep my health a secret for fear of judgement and pity. I was told I had no hair or that I was bald due to the amount of hair I had lost during chemo (Note: at this time I was still being treated with chemo). I was called names and grabbed by the cheeks a lot, mainly by boys, due to the amount of swelling on my face caused by Prednisolone. I couldn’t walk to the bus stop, get on the bus, eat lunch, or even listen to the teachers without being harassed. I was even harassed on the days I was absent. They just never stopped and I was on my own through this. I grew such a strong hate for everyone in that school, and that’s why I was glad to go to a new school for ninth grade where I wouldn’t see any of them.

In ninth grade, the bullying eased but it did continue. I was constantly asked, “why’s your face so red.. what’s on your face?” I was told that I should wash my face before I spread the allergic reaction. My teacher even asked me in front of the whole class, “what happened to your face?” I was more mature than seniors who couldn’t hold back their negative comments or facial expressions. I was sent home early a lot because I couldn’t handle one little comment or question. Again, I was bullied for my hair. I’m now going to tenth grade. On my second week, I got sick. I wasn’t getting enough protein in my kidneys. I was put on a high dosage of steroids and even more medications. I believed that everything would go away in at least a month, the swelling, and all the pain, so I asked to be home schooled, that did happen but instead, it was for the whole school year. I refused to go to school with the swelling throughout my whole body. At first home school was a pleasure, now I dread it and can’t wait to go back. During this relapse, I was practically sick of some sort almost everyday for at least five months straight. I lost all my so called friends, they didn’t bother to even send a text. One girl that I thought was a best friend didn’t even realize I was missing from school until a month later. I was in and out of hospitals, had to start getting weekly infusions, and I was tired, both physically and emotionally. I became scared of the world and scared of myself. I wouldn’t let myself leave the house because fear of judgement. When I finally built the courage to go out, I was let down by complete strangers. I was weak and I became a whole new different person, in such negative ways. Although I had much support, I felt so alone. Now that I look back at these months, I honestly don’t know how I went through what I went through.

With Lupus, my body is turning on itself. I never know what to expect, but then again, I could sometimes figure out what the doctors will say or what they’ll want. My lupus could be asleep today, but I don’t really see it that way. It scares me how many medications I take daily, 18, and that number is never steady. Putting sunscreen on daily is so simple, yet for me, it gets tiring. Everything that comes with Lupus gets tiring. Some days are much harder than others. The fatigue gets bad sometimes where I want to be in bed all day, but I still manage to push myself. I once read, “One of the hardest things is that you look fine most of the time so people don’t realize how sick you are,” and that is true. I feel myself living, going out, but not speaking how I really feel for the sake of others. You’d think by now I’d be used to things like getting blood work, but for some reason it’s gotten harder. I sometimes question whether I’m being tested or why I’m being punished. I often feel alone because knowing the fact that no one will ever understand, but can only try, hurts. I don’t want anyone’s pity. I don’t want to be treated differently. I just want someone to know or hear me out on everything. I wish some would realize that I didn’t chose this life, I didn’t chose to have a chronic illness, lupus is not something that you can just “get over”. I feel guilty a lot, even for writing this, but deep down, I know I shouldn’t feel that way. I’m so thankful for the support and care I get. I’m thankful for the people that never gave up on me, even when I gave up on myself. The only thing I’m thankful to lupus for is that it’s shaping me into a stronger person and teaching me how to be thankful for the little thing in life, for one day, it could be taken away.

Lupus gets physically, socially, and emotionally draining. It has destroyed parts of me, but it has not destroyed me, and I don’t plan on that. So what is lupus to me? Lupus is my weakness yet my strength. Lupus is my journey, it is my reality, and I’m still learning to accept that.

Emily
New York
Submitted 05/21/2014

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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2 comments

  1. I understand you and I know what your going through. I have multiple autoimmune conditions and I just had a major lupus flare at the end of June. But because of the medications I’m on and current conditions I’m waiting to be officially diagnosed. I live with chronic pain everyday and when you have multiple conditions it can be difficult to get outta bed and put one foot in front of the other. But my strength comes from within and I ask myself “if my days are limited do I really want to spend them in bed”? So I try to make as many of them count as possible and rest when I must. Just because I’m sick doesn’t mean I can’t dance in the rain in the pale moon light! Be the wolf..and don’t be ashamed of your rashes, your never going to see those strangers again so put your chin up and ignore them. If you want to chat, e-mail me

  2. Your own post was audio to my head and therapy for my brain! We was hospitalized 2 times since January 19th 2013 with water around my cardiovascular system and lungs. My pulmonologist mentioned Merged Connective Tissue Sickness, but have definitely not been given a diagnosis. I see a Immunologist on May 7. This is a long and at times scary road. Prednisone made me feel worse and I am now trying a new form of this. Everything you authored about gave me some new insight. Thank you!

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