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Learning to Live With My Lousy Roommate, Lupus

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Lupus is the most disrespectful roommate I’ve ever had to live with. But before I go on to tell you of its ratchet shenanigans, let’s start with the basics. Lupus is an autoimmune disease in which the body basically attacks itself. The immune system is so overactive that it attacks not only pathogens but also healthy tissue. It means well, but just tends to go overboard — a lot! It causes chronic pain and fatigue as well as a host of other problems. Be sure to check out its portfolio at any lupus website.

OK, so now you know the basics of it. What you may also not know is that it’s very hard to diagnose lupus. It often shows up in a different form, just like a shapeshifter. This makes it super frustrating for everyone involved — the doctor, the patient, the family, friends — the list goes on.

I was diagnosed at the age of 15 but I already had symptoms at 13. My hair was falling out, I had joint pains and body aches, and my skin was all weird-looking. It was painful and humiliating. It took a near-death experience for it to reveal itself as the evil antagonist of the story. One thing I came to learn is that living with lupus is hard! Not impossible, but goddamn hard! Its attacks can target the different spheres of your life: your mental, spiritual, emotional, mental and physical well-being, in the most relentless fashion.

In my experience, the worst part about it is its invisible nature. Seriously, it’s very upsetting when medical tests are done showing you’re in perfect health when you feel like total shit. You struggle to get through each day and this starts in the morning. Joint pain, fatigue, body aches, skin sensitivity… I mean, I’m only one person!

You can lose work, friends and relationships because most people believe what they see, and with lupus you barely see much. I have lost so many friends who called my “excuse” of being sick flaky and tiresome. I have lost work because I go to the hospital a lot and very randomly. Even my family (except my mum) still can’t wrap their heads around it. They think, “you were fine yesterday but sick today, WTF?” I don’t remember a day without pain since it started.

Now I’m 33 years old and when I reflect on my journey I sometimes feel so alone, afraid, humiliated, anxious, depressed and it hurts. I’ve been going for therapy for a while now, and that is where I learned that I’m living my life in so much mental and emotional distress. There is a reason many lupus patients prefer to be called Lupus Warriors — we are battling for our lives every day.

That’s the shitty side of the coin. Let’s look at the positive side of it. I have very good friends who see me and accept me as I am. The rest had to go through a purge. When you are at the bottom, you learn who people truly are. I learned the hard way. I became more assertive and decisive because I am very careful about how I spend my energy and with whom. I learned I am a person full of grit and resilience, self-motivation, inner strength, adaptability, honesty and empathy. I also learned to drop my bid to be the best in everything and be appreciative of the effort I put in and the outcomes I produce. I also learned to let people in and that’s how I was blessed with such amazing friends.

Living with lupus or living with and/or supporting a lupus warrior is one heck of a journey. It may have many bumps along the way, but it’s still worth taking. If you know someone with lupus, cheer them on. If you are a warrior, cheer yourself on. This life is always worth living, even if it’s with a very mean roommate. You can still enjoy life and when you feel you can’t, that’s also OK — don’t stress. You, like me, are a warrior. No matter what happens, the fight continues and every day is a success. Don’t let anyone tell you any different.

Getty image by Anastasia Sergienko.

Originally published: May 6, 2020
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