3 things I wish people would not say to (me) someone with Lupus

I am currently sitting on my home office chair, trying to finish this article as fast as I can because any minute from now, my legs would start to bloat. I have been very weak today. Woke up at 11AM, feeling sore all over and could barely get up. I had to eat, so I prepared a special meal that I can actually eat, instead of the normal Filipino meal or else, I would be having flares for who knows how long.

Although the pain today is not as intense as my worst flare days, it’s still undeniably recognizable. I have lupus, an autoimmune disease that causes my body to mistake its own cells and proteins for invaders (like viruses).Then it attacks them with the same vigor as a healthy immune system attacking an infection.

It took me two years to finally open up about this disease. I was in denial the whole two years. The illness itself was unbelievable until I woke up one day with a swollen body. Even now, almost three years after my lupus diagnosis, I still have trouble believing this is my life. I went through depression and confusion. Not only have I had to take meds that cause extreme intestinal pain, my self esteem also went downward spiral because I gained a lot of weight from taking steroids. I was 30 years old when I was diagnosed, I am turning 33 this year and I’m facing a lifetime of sickness.

Even as the inner battle that comes with a lifelong diagnosis subsides, I still struggle to explain to friends and relatives what lupus is and why, even if you couldn’t see the disease just by looking at me, it can be truly debilitating.

 

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Three years ago, or even a year ago, I wouldn’t have allowed myself to write about Lupus. It’s embarrassing. I feel like I am opening my weakness to strangers. But I have joined two Lupus communities the past year and the articles that they shared helped me and my sanity lot of times. I also just experienced something extremely upsetting today that made me decide to write about this topic. Might help my fellow Luppies.

 

3 things I wish people would not say to (me) someone with Lupus

 

1. You look fine, you don’t look sick. You are faking it.

 

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This is one of the worst things that you can say to someone with Lupus. We are fighting this thing on a daily basis, trying to do our best to be normal so that we can still do what normal people do; to say this to us (especially if you are aware) is completely ridiculous and discourteous.

 

2. You gained a lot of weight

 

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When I was first diagnosed, my legs were swollen everyday. My then doctor started me on a steroid medication that is known to cause weight gain. I was ready to put on some weight, but it wasn’t just SOME weight, it was a LOT of weight. 36 kilos to be exact. All put on in less than a year. I’m only 5 feet tall, and while my friends say I’m curvy, the weight gain totally took a toll on me.

[Continued to write this blog the next day because feet started to swell the other night and I needed to lie down, fell asleep eventually.]

The day I realized how much my body had changed, I totally lost it. It still gives me a lump in my throat.

I am a wedding singer. The motif was white. It was a beach wedding. I left the house feeling gorgeous and confident. But one tagged photo later from the emcee, I saw what I looked like. I had ballooned up so much that it was as if I were staring at a funhouse mirror version of myself. For the next months, I avoided cameras and begged people not to post whole body photos of me, feeling panicked every time they did, and sending frantic and embarrassing messages pleading for them to crop my body out of the picture (of course my face should still be there lol). One truly good friend wrote back (Hi Kate), “I thought you looked beautiful, but I’ll remove it right now.” It was one of the nicest things someone did for me throughout this ordeal. I had to stop singing for three months because I was so scared to go out of the house and flaunt myself to the world.

None of my clothes fit: pants, shirts, underwear, pajamas, dresses- nothing. I had to let them all go. I needed to buy an entirely new wardrobe which was an added burden to my monthly budget.

 

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Before and After

Luckily though, I have the best support system- my Mama Nards and my closest friends who helped me a lot in regaining my self esteem. While some of the weight has dropped off, and I finally have enough courage to work out and do yoga, it’s still an uphill battle.

My new meds cause me to retain water, especially in my hands, and my hormones defeat me all the time. Medications can cause drastic changes in physical appearance. Try not to be judgmental. I guarantee the person who put on a lot of weight is being plenty hard on herself as it is.

 

3. You’re a flake

 

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I have to cancel a LOT of plans- night out with friends, coffee with friends, banking responsibilities, unpaid bills, grocery day schedule; I told you- A LOT. I know that sounded like I’m a flake, but please, please don’t take it personally. There are days where I am so worn out from the shower I just took to get ready to go out that I need to cancel my plans. Most of the days, I get too exhausted and sore to even sit up without getting a swollen feet after 30 minutes or so, let alone travel downtown to hang out in a crowded cafe. The thought of having to deal with the noise and the people, terrifies me a lot that I have to choose staying at home.

Sometimes, taking a meal could be so tiring that halfway through, I have to lie down for at least half an hour. People think I’m fine because I can manage to go out on a weekend, or take my son to a pool, or meet with some friends for coffee. But most of the time, the next day would be a total nightmare. I would wake up with a sore body just because I spent an hour walking with my friends, doing window shopping. Or I got too emotional over a friend’s story or I got too happy. Yes, you read that right. I can’t have too much of both. I can’t be too sad and I can’t be too happy. Or, I would make plans with friends, the next day arrives, I would wake up feeling worn out that I had to sleep all day. So I would call to cancel.

 

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I tell you, it’s depressing. I’m always afraid someone will think I’m just unreliable and I would cry all day. The truth is canceling plans because I feel sick is always emotionally difficult for me.

 

The Battle 

 

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Once in a while, I’ll be feeling pretty damn good for four or five days at a time. I can go out, write, sing, do whatever I want! But eventually, I’ll start to feel sick again; sometimes, needing a full week to rest. This is what’s frustrating about this disease. I don’t know when a bad flare is coming, and sometimes I feel like it will never end.

 

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I’m extremely sensitive to the sun. Most of the time, the only way I can be outside my home is after 4:30pm. I am lucky that my profession allows me to work from home, but even a humid weather can cause my skin to hurt. I live in a tropical country, it’s double the struggle. I also have to use an umbrella most of the time, and I hate umbrellas. I put a generous amount of sunscreen every 30 minutes when out in the beach with people giving me weird look for putting on too much sunscreen. No, I’m not afraid to get a dark skin, I’m afraid to die. But then inevitably, I was forced to learn that I don’t care what other people think about me or how weird I look. If I don’t use the things I need to protect myself, I’m the one who is going to be in bed after a couple of days, not them.

 

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My life has completely changed, and I can’t deny it has also touched my emotions. Having to adapt to a new body and/or life is really hard. I had moments of contemplating to see a psychologist.

It takes time to break the cycle of denial, but after I ended up in a hospital a couple of times, I learned that my safety is first, no matter if people can’t understand.

 

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Here’s a beautiful photo from a Lupus community that I joined to wrap this article up

 

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