One woman’s fight against Lupus

Telling my Lupus story always gets me very emotional. It takes me back to the most painful and confusing period of my life: To exist physically, but not be present, because your body has betrayed and deserted you, becoming so unfamiliar to you and you have no control over it. It’s a dark place for me. One reason I don’t mind going there is that I overcame it and I want to help others do the same.

I got diagnosed with Lupus, late December 2014. This was after several visits to (and stay at) a very reputable hospital, and having the doctors tell me my test results and x-rays were fine, except for repeatedly high ESRs. But then I’d had Rheumatoid Arthritis (RA) since I was about 5 years old, so that wasn’t too out of place. The best diagnosis I got from there was “Connective tissue disease exacerbated by any form of stress”. That’s what was written on my NYSC camp-exemption doctor’s note. I missed my NYSC camp; I’d looked forward to camp from the moment I knew I was going to be in Lagos. People said Lagos camp was the most bearable place to hope for, plus, all the hot guys and IJGBs would be there. I was all set, complete with nice braids and all.

When I went to camp to present my doctor’s note, we were allowed to drive all the way in, because the security people could see I was in no shape to walk. When I did have to walk in buildings, I was supported on each side to get from point to point. Everywhere we got, it was the same thing. The officials would take one look at me and: “What’s wrong with her?” “We’re not sure yet.” “Ahn ah! She’s very sick, so why didn’t she get complete excuse from NYSC?” “She didn’t need to. She’d been fine all year.” “So how long has she been sick now?” “About two weeks.” TWO WEEKS! AND SHE’S LIKE THIS?? Take your exeat (to leave camp) slip and go home.

During the festivities for graduation from university just two weeks earlier, I knew something was seriously wrong, but I did not let on the extent, to my family and friends. I struggled through the activities, packed my hair in a style to hide the swollen lymph nodes in my neck, and told each person who noticed anything was amiss, only one symptom out of the myriad I was experiencing.

I didn’t want to be told “Only you??” So I bore it all till my skin was peeling off, my fingers were too swollen to grasp anything, I was constantly burning from fevers and I had no energy because I refused to eat, because moving any part of my mouth hurt too much. Even if I did have the energy, moving my muscles and joints was too painful; I needed help with everything. Also, I didn’t want to be woken from sleep to do anything. Sleep was all I wanted to do and did, initially. I couldn’t keep my eyes open longer than forty-five minutes. It felt like such a torturous task to be awake. Even after I told my immediate family, it was “yeah, your joints do look kinda swollen, and your skin is probably from insect bites that you scratched really hard at; we’ll put Calamine lotion.” So while my body was breaking apart, I was the only one who knew how badly, was experiencing it and was panicking. This has now helped me understand how people see you (suffering through) going about your regular activities and assume everything’s okay.

It was about two weeks from graduation, where I walked and laughed with my coursemates, to NYSC camp, where some of those coursemates saw me being carried and stared with questions. In two weeks, “something” had ravaged my body beyond recognition and I had no idea what. How was I supposed to fight an unknown enemy?

Since camp was cancelled, I spent more time at the hospital waiting for answers. Because that diagnosis was only speculative, they couldn’t prescribe a specific treatment plan, and I was losing this battle. The doctors decided to wait for a consulting Rheumatologist who was going to be another month before he’d be around. Naaah. I wouldn’t live in that condition for another month. If things continued like that for the next week, I would dictate my own fate. Yeah, I got to that point. Thankfully, I got some hope.

A few days later, I was back at the hospital, so they could help manage the pain at least, when someone mentioned a good friend and contemporary of his who was just about the best in the rheumatology field. HOW DIDN’T YOU THINK OF THIS SOONER?? Okay, maybe I won’t die yet. He was contacted, but unfortunately, he was out of the country for a while. Okay, back to dying for me. The situation was quite dire, so he cut his trip short. In the time before he returned, my beautiful braids were cut haphazardly, because one night the pain in my head had been so severe, I’d screamed “MY BRAIN IS ON FIRE!” It did feel like my brain was on fire and was being squeezed in a vice. Another time I begged to have my toes cut off because it felt like someone held a candle to them. Thankfully, no one answered me.

The rheumatologist (rheumy) returned, saw me, asked questions and I answered as best I could. Then he ordered some tests. It would be another week before we’d get results, because for some reason, the tests are not done in the country, and the samples have to be flown to South Africa. Through all of this, many suggestions had been coming up: try a doctor that helped a friend’s cousin’s younger sister’s uncle’s mother-in-law with her swollen ear, try the latest diet, try special herbs, and so on. But the most stressful? The religious suggestions. I understood they all meant well, but I didn’t want to be pulled into a rat race of running from pillar to post, where my desperation would be preyed upon and taken advantage of because I knew the havoc that could wreak. It’s tough putting your foot down in these climes, especially when everyone wants to “help”, but this was my health and I was the only one who truly knew what I was suffering.

The longest week ended, results came back and I saw the rheumy. He said “Just what I thought. You have Systemic Lupus [Erythematosus (SLE)]. We’ll begin treatment immediately and you’ll be walking again in three days.” The next day, as my brain was back to working, I looked up “SLE” and the words “currently no cure for Lupus” hit me. WHAT DO YOU MEAN?! I thought the craziness was over. “No cure, only lifetime management.” At the next appointment I asked my rheumy and he confirmed so. He gave the basic summary and said I’d have to learn most of it as I go, because no two Lupus cases are the same and your rheumy is learning about you, just as you are. And thus began my personal fight against this disease. Now I had a name to it, I started to arm myself with all the knowledge I could, about the disease and about my body.

Everything started to make sense: the RA from childhood, always having to carry balms and painkillers on my person and to fear cold weather, passing out in the market, January of that year, waking up with an unexplainably swollen ankle in July, all the dizzy spells, it was Lupus all along.

It’s difficult to understand if you haven’t experienced it. Autoimmune conditions are just about the greatest paradoxes ever. Your immune system which is supposed to protect you, for some unknown reason turns against your body and starts to destroy it. It gives new meaning to “You are your own worst enemy.”, and makes you question everything you thought you knew. Now, I have more than painkillers for medication, and probably should invest in my local pharmacies, hahaha, but I live a life constantly filled with gratitude, always appreciating anyone who shows the slightest interest in learning about this condition that scarred me in so many ways, and physically too. Sometimes I catch people staring at me and it usually takes about 2 seconds to remember I have no hair on my head, and I smile at their curiosity. Then I giggle to myself because I think “Bet you wouldn’t imagine anything like Lupus did this.” But Lupus did and still does take my hair, so I chopped it all off because I refuse to be at its mercy. Life is much slower for me now and that’s a good thing. I keep learning to differentiate what’s important, from everything drawing my attention; I cannot afford any form of stress. Some days are tougher than others, but I make sure to keep pushing.

Knowing that I had Lupus, a chronic condition that involves long-term medication and active lifestyle modification, I found myself going through the 5 stages of grief, because I experienced a terrible sense of loss; I’d lost a good portion of myself. I’d lost my reasonable, controllable health, my carefree nature, some relationships, and trust in my body. I Denied it was chronic and just waited for it to go away, I got Angry because I’ve been a good person and certainly don’t deserve it. I Bargained with God to make it go away and I’ll treat my body like the temple He requires, I fell into Depression when I thought everyone had left me alone with this and their lives were carrying on as normal, and then I finally Accepted that this (Lupus) was here to stay, and if I didn’t fight to win, I would surely lose.

After that, the journey became easier, but some days, the feeling of loss returns and I start to grieve all over again, with Depression hitting the hardest. When it would happen like that, I would search online for people’s Lupus stories for some sort of comfort. On one of such days, I stumbled across a story quite similar to mine, on Bella Naija. And she was in Nigeria, gasp! And she was willing to connect with other Lupies, double gasp!! I was super stoked, because I could finally interact on a more personal level with a person who had been through what I had been through. So I sent her the weirdest e-mail that afternoon, describing my day and need to talk, but not with a friend who would worry extra, with a person who would simply listen and understand. That began my wonderful friendship with this brave warrior named Toluwanimi, and the safe space she created for herself and other Lupies, The Lupus Refuge (TLR).

TLR is a place of happiness for me; I get to meet and engage with other Lupies, some just starting their journeys and still going through grief, others with time and experience living good lives with this condition. Some with lives similar to mine, others with more complicated situations. One common thing is we all find understanding, acceptance and support there. It encourages me so much, especially when we have our group discussions and we share personal experiences, there’s usually this feeling of “OMG! Me too! I thought I was alone with this confusion, but you’ve been there also. How are you managing it?” It’s a no-judgment zone, and this is very important for Lupies, who are not only coming to terms and dealing with this new, constant threat to their lives, but they also have to help their loved ones understand it, so there is no hatred or fear against the Lupie. I wish I’d had this niche from the get-go, and one of my desires is that every Lupie has access to such support.

I have tried to describe the darkness I went through in the two months of my very first proper Lupus flare, but I’ve come to know that for others, that darkness is worse; they don’t have the resources and support system I had, they don’t get answers as “quickly” as I did, and they cannot refuse to be dragged from pillar to post in the name of getting cured. It is another reason to raise awareness.
The craziest part is, getting a diagnosis is only the beginning, because you now know how formidable your enemy can be. Every single day, it’s you against yourself.

You have to know yourself through and through, to know how best to go about your fight, so you actually have a life to live and enjoy, while remembering that if you don’t do well enough, you will pay for it. You go to bed hoping to wake up to continue this fight; all of your actions are consciously geared towards ensuring you kick Lupus butt, and that’s why I’m a warrior. But I’m not only a warrior because of the battle I fight, but I’m also a victor because I win.

If you have been diagnosed with Lupus or you know someone living with Lupus, please send us an email t.fijabi@thelupusrefuge.org and let us help you through this journey.