If you read nothing else today, read this. It is a young woman’s story of unflinching strength in the face of Lupus – an autoimmune disease that has no cure. Toluwanimi chronicles her journey, 3 years after being diagnosed with this life changing situation. With the support of her family and friends, she has turned this experience, into a source of hope for other people who are going through the same thing. Founding Lupus Refuge – a Non-governmental organization, Toluwanimi seeks to take strides to support other Nigerians living with Lupus.
BellaNaija is proud to take a stand with Toluwanimi, and Lupus Refuge.
I was thirteen years old when my dad asked me “Toluwanimi, what is the hardest thing you have ever had to deal with in your life?” I thought long and hard, preparing myself for the serious talk I felt was coming. I replied, “nothing”. I had wondered what could really go wrong in a thirteen year old’s life. That question sparked the start of our father-daughter conversations where he passed on to me words and instructions that would later be the core of who I am today.
I remember him teaching me about how hard life gets sometimes and how my faith (relationship, and not religion, with God), support system and core values would be my armour during such times. I doubt my father can ask me that question anymore, because we both know the answer to the question.
Three years ago, at the age of twenty-four, I got diagnosed with SLE – Systemic Lupus Erythematous; which is simply known as Lupus. Lupus is an autoimmune disease in which the body’s immune system attacks healthy tissues in the body, because it confuses it as foreign. So, basically, my immune system is doing exactly what it is not supposed to do; which can cause disease of the skin, heart, lungs, kidneys, joints and nervous system. 90% of Lupus patients are women. There is no known cause of Lupus and also no cure. The only way to manage it, as at now, is via medication and conscious living.
It took six months to get a diagnosis, because I had so many symptoms that could not be categorised. It had the doctors and me confused. This confusion arises from different manifestations of Lupus in different bodies and is a reason cure has been elusive. In those six months I saw seven different doctors just to make sense of what was happening to my body. On the outside I looked fine, but on the inside I felt like a different person.
It is not funny that four out of the seven doctors told me I had malaria. Yes, Malaria! To be fair to them the tests confirmed malaria, even though it was one of many symptoms. My major preoccupation was to let the doctors see that there was a problem. I didn’t know what it was, but I knew that it was serious.
Once I got treated with malaria, I got slightly better but I was back in the hospital in two weeks. I went from being an infrequent visitor to hospitals to being a regular. I met doctors who were not listening to me and who felt I was questioning their competence. I expected a lot more from private hospitals, but met with disappointment.
One of my biggest regrets was not being open with my family and close friends about how I was feeling. I didn’t want to “bother” them. In hindsight, that was just stupid. In difficult times, your family is may be your best support system.
In those six months, my symptoms were fatigue, fever, loss of appetite and unexplainable hunger (which was just confusing – one minute I didn’t feel like eating, the next I felt like eating a house). I also experienced muscle aches (these were constant all through and I still have them now), ulcers of the mouth and morning stiffness (where in the first fifteen minutes of the day I wouldn’t be able to move any part of my body. So I just lay there like a log of wood waiting for the stiffness to subside). There were occasional facial rashes; also known as the butterfly rashes – red rashes all over my face. I just woke up and saw those rashes sometimes. And whenever I had them, I found it difficult to step out of my room.
Then there were chest pains, numbness in fingers and feet and heat stroke. I usually experienced the heat stroke, which made my knees buckle and left me struggling to breathe. And how can I forget the excruciating pains in my joints and the hair loss? At first I thought it was my hair breaking; so I cut it often, only to still have it fall off, leaving bald spots.
After the hair loss, I was so scared, that I told my parents about how I felt without really going into details. They lived in Abeokuta and my mum just told me to come home. We decided to visit the Federal Medical Center in Abeokuta and we ran so many tests (comprehensive I must add). I remember leaving the hospital at around noon feeling light headed, and two hours later I had to be rushed back because I was weak and could hardy talk.
I got admitted and then the doctors ran more tests. Different teams of doctors came in to check and they reached the same conclusion, “We don’t know what is wrong with her” To be honest I was scared and I started preparing myself mentally for death. I didn’t want death to catch me unaware. After about a week at the hospital with no clear solution in sight, Dr Oke (a dermatologist) and her team came to see me for a consultation. I prepared myself for the deluge of questions that got us no results. It just felt like a waste of my precious time at this point. I was thinking why is a dermatologist here? Just because of the skin rash? She then started to ask me questions about symptoms I had forgotten I had. She asked me if I was losing my hair. As I had not told my family about this, it came as a shock to my dad when I said yes.
I watched Dr. Oke and her team members discuss and try to eliminate options. The team’s dexterity and professionalism impressed me. I felt so honoured to be given such attention. Then came the verdict: “I think Toluwanini has SLE. We would need to take her blood sample and send it to this lab in South Africa for confirmation”. I remember my mother clearly binding and casting out SLE, but I was just relieved: glad that we were heading somewhere at last. I had my blood samples taken and got discharged to await the results.
Once the results confirmed Lupus, I got placed on steroids (which I call the devil because it makes me add a lot of weight even when I am just breathing). Once I had stabilized I flew to Atlanta to see a specialist just to be sure I hadn’t been diagnosed wrongly. The specialist in a top hospital, another female, confirmed it was Lupus, but was worried about me as she felt my case was the worst case of Lupus she had ever seen. I think she was just shocked I could still walk and do normal things. She thought I was a miracle on two feet. That was very heartening to my family and me.
It has been three years now and I have learned so much from this process. I am still learning about my body. Sometimes I feel like I have mastered managing it; then I get a flare. Flare is when I have lupus symptoms. Sometimes it is mild and sometimes severe. Flares can occur abruptly without any clear cause. So you can take your medications, stay out of the sun, not stress yourself and still get a flare. This was the hardest thing for me to comprehend, and I don’t think I fully do now. I have tried to create structures to make life easier for me to manage Lupus better. It has taken me almost three years to finally admit to myself that I cannot do the things I used to do before and that it is okay. I am still finding out ways to make the best of this situation.
Lupus has changed my life, made me want more out of my life, and made me enjoy the little things. It has also made me love and depend on my support system better and made me love myself the more. Not to be deterred by Lupus, I created a boutique events planning business about two years ago and this year has been the first year I actually devoted time to it. I spent most of last year being on bed rest because my flares were pretty consistent and, if I am to be honest, I was in a pity party phase, making excuses for everything. I started this year differently and I just want to keep pushing. There are the really bad days but I am learning not to dwell on them. It is still a process but I see growth.
When I got diagnosed I really couldn’t talk to my family or friends about it, because I was just figuring things out and I was so be fair to them, they were confused to. I felt like I was being such a burden to them.
I watched the people I loved the most hurt and suffer because I was sick and that made me feel really guilty for the longest time. I mean how do you live with the fact that you are the reason your loved one is hurting? In retrospect that was too much pressure to put on myself.
So I found a different safe space; the internet. I found support groups and blogs. I read stories of triumph and survival. I cried with some of them and danced for some. People I had never met became my family. Somebody finally got me.
It has been three years since I got diagnosed and we still don’t have a functional support group for Lupus warriors in Nigeria. To fill that void, I created The Lupus Refuge; which is a haven for lupus warriors. It is a support group to help people living with Lupus and possibly their families. The goal is to link them up with rheumatologists, nutritionists and psychologists; create awareness about Lupus in the country; and partner with hospitals and laboratories so that we are the first point of call once a new patient is diagnosed. Part of our goal is to raise money to fund research to find a cure for Lupus.
It has taken over a year from the time I knew I was supposed to do this, to the time I actually started the process. A lot of insecurity questions have bombarded my heart: “Who do you think you are to lead this charge? You are such a private person why do you want people to know you are sick? Do you want this attention?” Honestly, I still ask myself these questions but a strong voice in my spirit tells me this is what I am supposed to be doing. I am persuaded that myself and other Lupus warriors are created for more and that as a team we can make this be a HAVEN just for us. We are coming from a place of strength, turning losses into wins. I am excited about the opportunities that are unfolding.
My name is Toluwanimi, I am living with Lupus but it doesn’t define or cripple me.
If you have been diagnosed with Lupus or you know someone with Lupus, please send us an email firstname.lastname@example.org and let us create something beautiful together.
Thanks so much BellaNaija for being a partner.
Photo Credit: Kjetil Kolbjornsrud | Dreamstime