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“This Lupus will Not Define or Cripple Me” – Toluwanimi’s Story of Strength & Courage is a MUST READ

BellaNaija.com

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**Image used for illustration and not representation of the writer**

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.
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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 [email protected] and let us create something beautiful together.

Thanks so much BellaNaija for being a partner.

Photo Credit: Kjetil Kolbjornsrud | Dreamstime

26 Comments

  1. Cozygal

    October 7, 2017 at 12:45 pm

    Thank you so much for sharing your story and thank you for deciding to be channel Blessing to others who are going through the same thing.

    • nena

      October 8, 2017 at 7:59 am

      This story so reminds me of mine. Found out I have an autoimmune disease almost 3 years ago now and everyday had been a constant struggle. I’ve had people judge me for it because most of the time I’m extremely tired and it has really affected me socially. People have so many wrong opinions of me from thinking I’m a b*tch to being uptight someone even told me they think I have psychological problems. They have no idea of the internal battles I fight everyday. I’m just greatful that I’m better than I was 2-3 years ago, I try to live as healthy as possible, take all my supplements and hormones and give no cares about people and their wrong opinions.

    • Toluwanimi

      October 9, 2017 at 12:48 am

      Thank you so much

  2. Halima

    October 7, 2017 at 12:51 pm

    wow. you are a warrior. Thanks for sharing

  3. Funmilola

    October 7, 2017 at 12:59 pm

    Hmmmm!
    I’ve never head of lupus before, thanks for the enlightenment. You are awesome and may your strength and faith in God keep you.
    All the best in your endeavors too.

  4. Anon

    October 7, 2017 at 1:55 pm

    Lovely piece. Well done. I know two people with lupus. Similar story to yours.

    • Toluwanimi

      October 9, 2017 at 1:18 am

      Hi could you please get them to send me an email [email protected] . I would really appreciate that.

  5. Judgejudyjudy

    October 7, 2017 at 2:06 pm

    Thank you so much for sharing your story with the world Tolu. We need more education about Lupus, and I wonder how people who low key have been feeling all of these symptoms you have outlined but don’t have access to going abroad would manage. I am so proud of Dr Oke’s Team, we need more of such competency and professionalism in Medicine. I felt really proud.
    I’ve got a friend who’s been living with Lupus. She is quite public with hers so you could check her out on IG- HealthyEverydayLiving- her name is Motunrayo, she’s a real warrior. She’s also a fitness coach and mum of two and I often wonder how she manages herself with all of these responsibilities. Thank you, again, for sharing this timely story with us. I always say, with God, ALL things are possible and even Lupus can bow. Stay and stand strong.
    I’ve also picked up a cue from your dad’s question about life, I think that is the question I’d ask my children in a few years in order to launch into an in depth teaching moment about the vicissitudes of life.
    Stay blessed.

    • Toluwanimi

      October 9, 2017 at 1:16 am

      Thank you so much for your kind words. Dr Oke’s team would forever hold a place in my heart. There is an increase in early diagnosis in Nigeria and that warms my heart. We still have a long way to go but I think we are on the right track.

      So Motunrayo was one of the first people I followed on Instagram. I still don’t know how she does it. Excersing induces my flares so it has to be really light. She gives me hope.

      My dad would be glad to know you are using his trick with your kids.

      With God ALL things are possible.

  6. Iceo

    October 7, 2017 at 2:46 pm

    U are fearfully and wonderfully made. You are a blessing and no matter what, always know God loves you and u have a family and friends that do too. Haven’t met u but I love u already. You’ll win this, Hang in there and stay blessed.

    • Toluwanimi

      October 9, 2017 at 1:23 am

      So I already love you too?

  7. Frida

    October 7, 2017 at 4:22 pm

    Stay strong! God’s got your back.
    Thanks for the awareness.

  8. Adeola

    October 7, 2017 at 4:52 pm

    I pray for complete remission in Jesus name – amen. Thanks for raising awareness and encouraging people to look for medical explanation of symptoms. I note hydroxychloroquine is one of the main stays of treatment and it is interesting that you momentarily felt better with treatment with antimalarials. I thus wonder whether the newer antimalarials used at a low dose could help induce remission better and if the self antigen the body is recognising is similar to that of the malaria parasite – so much research is needed.

    • Toluwanimi

      October 9, 2017 at 1:21 am

      You know you might be on to something here. Research is so key.

  9. LolaB

    October 7, 2017 at 5:36 pm

    This is the first I’ll be learning if this disease, and I’m happy you are using the situation to reach out to others going through the same. We may not know why we pass through challenges of life but one thing we must understand is that we are vessels meant for HIS use and glory. Toluwanimi, may you continue to find strength from above whenever you need it in Jesus name. God bless you.

  10. Ayuyu

    October 7, 2017 at 7:18 pm

    Go Tee! I am so so proud of you!

  11. o

    October 7, 2017 at 7:29 pm

    Remembering Jolomi Ikomi who lost the battle to lupus…..??

    Well-done Toluwani. God bless you

    • Toluwanimi

      October 9, 2017 at 12:52 am

      Doing this for all the Jolomi Ikomi’s we have lost. We are going to win this.

  12. Titilola

    October 7, 2017 at 8:53 pm

    Thank you for sharing your story and refusing to let it get to you but being a source of blessings to others.
    My story is quite similar. I was diagnosed with Takayasu arteritis, similar complains but a totally different diagnosis. Steroids (prednisolone)…..some drug!
    It’s been over a year since the diagnosis and I have been living one day at a time, taking care of my daughter, Ebunoluwa. And I’m really grateful for my support system, most especially my husband.
    Continue being strong, you’ll win! And so will I and others battling autoimmune disease, “it will not define us or cripple us”.

    • Toluwanimi

      October 9, 2017 at 1:04 am

      Dear Titilola, thank you for sharing. I had to go do some quick research because I have never heard of that before. I am glad you are making each day count and not letting this limit you. We won’t let these diseases win and we would fight till we get a handle on it.
      What would we be without our amazing support system? Ebunoluwa is going to grow up strong because she has seen her make magic out of the curveballs life has thrown at her. Thank you for the kind words, you don’t know how much they mean to me.

      PS I plan on throwing a proper thanksgiving service and after party owanmbe style once I get off prednisone. Asoebi, firewood jollof and smallchops just for the culture. I plan on inviting you of course.

  13. Hannah

    October 7, 2017 at 9:43 pm

    May God continue to strengthen you Tolu. This was really touching and I love your spirit. Inspirational piece. Well done dear God bless & heal you. By His stripes you are healed.

  14. Damilola Aweda-Cole

    October 10, 2017 at 9:39 am

    You know i first read of this disease in a novel and saw it in a movie once, I never thought i would have a friend conquering it, You are very brave dear and i know the Lord will keep being your strength. Please contact me when you have any outreach in Lagos, i will really love to help out. I just wish our country can put more effort in research

  15. Sweets

    October 10, 2017 at 1:26 pm

    Hmmmmm! Thanks for sharing. You made my day. I was diagnosed with muscular Dystrophy and my life hasn’t been the same. Making my kids understand that mummy can’t lift her hands is torture but l trust God. We are superwomen and we shall overcome!

  16. anab

    October 14, 2017 at 8:56 am

    Am Anab an SLE patient for 7 years now your story is similar to mine and it really touched me sooooo much that I had to shed tears…well done and always keep the spirit burning… all the best in your mission.

  17. Eunice Bello

    November 16, 2017 at 1:30 pm

    Baby!!!! Im soooo excited. I know this is late, but i literally cried after reading this and the comments!!!! Im sooo happy you’re on this Journey.

  18. Alagba Okwudili

    December 5, 2017 at 4:48 pm

    I have some friends with the same problem I want your Facebook name so I can link you up with them

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