Health Stories with Hygeia HMO explores the health struggles of everyday Nigerians. We’ll share these stories regularly – they will be tragic sometimes but will always be educative.
By Okonkwor Oyor C.
This edition of Health Stories with Hygeia HMO, we speak with a medical doctor with Systemic Lupus Erythematous (SLE) or Lupus. Lupus is a chronic condition in which the immune system fights the tissues in the body. We talk about how she discovered her disease, and the impact COVID-19 had on her ability to buy her drugs.
What’s your earliest memory of being admitted in a hospital?
My earliest memory of being admitted in a hospital was in 2013, I was in 200 level when I had to undergo a hernia surgery and there were complications. It took another 4 months to completely heal. My saving grace was a long ASUU strike that lasted through most of the period it took me to heal.
That was lucky…
So, how has life been since the pandemic started?
Quite difficult actually. Aside from the Naira sinking like a stone thrown into water, the prices of my drugs have skyrocketed. For instance, I used to get a pack of hydroxychloroquine at N2500 before the pandemic started. Then it went up to N17,000.
Did you struggle with getting your drugs due to the cost?
Well…I didn’t struggle because my parents were always there to pitch in. But I cringed at the thought of asking them to help. Still, I am grateful for their help and support.
How much is it now?
Now, the price has dropped further now to around N6,000 – N7,000. Still more than 3 times more expensive than before the pandemic.
What’s the most you’ve spent on healthcare (yourself or for someone else)?
I’ve spent over N100,000 twice before. Once when I had to do a surgery and also around the time I was diagnosed. These days I spend an average of N60, 000 – N70, 000 monthly on my health. Majorly drugs.
When did you first suspect that something was wrong?
It was in early 2014. My first professional exams in medical school were 3 months away. There was a lot of pressure because we were just returning from a very lengthy ASUU strike, so everything was being rushed. I was always tired, but I felt it was to be expected as we were doing double work and barely able to keep up. But mine was this chronic fatigue. Then I’d always come down with ‘malaria’. I was always having fever and joint pains. But after treating malaria for the 3rd time in the same month, I knew something was wrong. Then I started to have nose bleeds. The joint pains were so bad in the mornings that my roommates started helping me fetch water to have my bath. Then the malar rash came and facial puffiness and leg swellings. But we had professional exams, and I knew I had to struggle to write them first. Delaying would have meant writing it as a re-sit (retaking the exams). That wasn’t an option for me.
How did you feel when you got the news?
I got help after my professional exams. Thankfully, my symptoms were clear enough for the doctor to give a provisional diagnosis. The confirmatory tests were positive, so it was clear that I had Systemic Lupus Erythematosus. Basically, my body is fighting itself.
I wasn’t afraid. But I felt like crap, and from that moment on, I’ve kind of been more aware of death and dying. The look on my parents’ face broke my heart though. Even now sometimes they still look at me like that…
Like I can be taken from them at any moment.
Sorry about that man, it must be tough.
How has your illness affected your outlook on life?
Well, surprisingly my outlook on life became better. I took the news pretty well. I used to be very uptight and shy before then. But after my diagnosis, I realized life was too short for all that. Of course, the change wasn’t instant, but slowly I began charting my life on a better course. Now I have a lot of great friends and acquaintances. I also have a lot of diverse experiences too. I doubt all these would have happened if I didn’t have SLE.
Can you share one of these experiences?
Well, I started trying to experience life more after my diagnosis. I learned how to initiate conversations, talk to strangers. I travelled a lot too, especially after school, and I even got involved in leadership roles and politics in school. 200 level me would have been shocked to the core! In all, I did more and lived more after I learned about my condition.
How have your family and friends coped with the news?
Well, everyone has been strong. My parents have been super. They take care of me like a baby. If not for them, I probably would have died a long time ago. I am eternally grateful to them. My friends who know about it have been supportive, and they always look out for me. They did throughout school, and even now after we’ve graduated. I’m super thankful for all of them. I think I’m happy everyone still expects me to reach my full potential, no one lets me slack or mope around when I’m down. But this is easy for them to do because I don’t give myself an inch too as well.
Tell me what it has been like, managing your illness in Nigeria?
Omo, let me put it like this. Two of the major things that can cause me to have a flare are Stress and Sunlight. Nigeria has these in abundance. But honestly, I can’t complain so much. I’m a doctor so really, I’m a phone call away from my doctors if anything is amiss. Plus I can generally take care of myself. But it’s still hard. Living in this country is stressful enough, then imagine living with a disease where stress is a contraindication. I struggle with fatigue, headaches and joint pains every other day. Plus the financial implications of keeping myself healthy, it can be a lot sometimes, but as I said before, I can’t complain so much.
What are your long-term fears about your illness?
I have Lupus Nephritis type V. It is slowly progressing, but the fear is I’d end up with an ESRD – End-Stage Kidney Disease (Terminal Kidney Disease) and need a transplant. I also have a large heart, so I’m assuming that would come with its own problems later.
So, what’s your strategy for staying mentally healthy?
Well, I joke a lot and I entertain myself by watching TV series, movies and hanging out with friends. I try not to think about the future too much.
What bothers you most about everything?
That I would die before I make the best of what I can with my life. Or even worse bedridden and begging for funds to stay alive.
Wow, that’s heavy…
What keeps you going?
My parents, my siblings, my friends who believe in me.
How has it affected your relationships?
Well, not much changed with my immediate family. It’s just been a lot of love even with all the extra hardships. I remember asking my boyfriend if he really wanted to remain with me knowing that things could get really bad. He said, “For better or worse, in sickness and in health.” I couldn’t have loved him more then.
What do you wish was different about healthcare in Nigeria?
Everything… Everything. The common man is too poor to treat an illness as basic as malaria. I see people anytime I attend the clinic and I feel like weeping because I know their condition progressed because they couldn’t afford some of the big guns used to treat this condition. The doctors are too few. There are only 2 consultant rheumatologists in LUTH where I attend the clinic, and SLE is still a very strange disease to a lot of health workers, so most people come to LUTH or LASUTH. Imagine the immense pressure on them. More also has to be done regarding some of these drugs. Healthcare would be more affordable with good health insurance schemes.
Anything you want to add?
Well, more advocacy still has to be done for Lupus. Many people think they have recurrent malaria and do all sorts before they discover it is Lupus. Usually, a lot of damage would have been done since then. It’s more common in women so a young lady with recurrent fever and joint pains should raise suspicion for it. Lastly, we need a lot more volunteer organizations to especially help those with financial constraints in handling this disease.
Thank you for sharing your story.
You are welcome.