I'm 16 years old and live with lupus - this is what it's really like to only go to school twice a week
We chat to a brave young woman who, through her pain, has not only had to learn to become self-sufficient at her studies when she’s not at school, but who has to deal with horrendous side-effects and flare ups that are often painful and unpredictable.
*Not her real name.
I think there are quite a lot of misconceptions around lupus – particularly around what it is and how it affects someone. Can you explain what exactly it entails?
Lupus basically means that your body is attacking itself, like all the healthy tissue, so it will attack everything from your joints to your brain, kidneys and even your skin.
In many cases you’ll never expect when a flare up will hit. You can't really plan for it and it comes at the most inconvenient times and it’s also really hard to explain.
A lot of people with lupus have a butterfly rash on their face. It’s the kind of chronic illness that attacks pretty much every aspect of your body and it comes with a lot of pain, especially joint pain.
Sometimes it hurts so much that you literally can't get up or it makes your lungs hurt because it's difficult to breathe.
You also experience extreme fatigue, so a lot of the time you feel too tired to do anything or go on with your day.
Mental function is also often impaired - for example when it was really bad, it got to a point where I couldn't do basic mathematics.
That was really scary because I was worried that I wouldn't be able to do it again before I knew that I could get better.
The symptoms really are never fully gone and there's always at least one you experience - it's either a headache, joint pains or you're really tired, nauseous or dizzy.
Can you tell us a little about your diagnosis journey? When did you feel like something was first wrong?
Back when I was in the 8th grade, I started not caring so much about my grades because I was just so tired all the time.
For me that wasn't normal because I'm really grades oriented and I'm a perfectionist so I always want to do the best that I can do.
And then I went to a new school and it was only getting worse because I was just so tired. I also used to get sick really easily.
So, if someone had a cold, I would immediately get it too and it would be really bad for me.
I would actually be out of it for up to three weeks where it usually takes someone up to three or four days to recover.
I also started losing my hair and I started gaining a lot of weight even though I wasn't really eating anything and doing a lot of exercise.
I was playing soccer and netball, hockey and did kickboxing.
I’m very aware some of my fans had noticed I was laying low for part of the summer and questioning why I wasn’t promoting my new music, which I was extremely proud of. So I found out I needed to get a kidney transplant due to my Lupus and was recovering. It was what I needed to do for my overall health. I honestly look forward to sharing with you, soon my journey through these past several months as I have always wanted to do with you. Until then I want to publicly thank my family and incredible team of doctors for everything they have done for me prior to and post-surgery. And finally, there aren’t words to describe how I can possibly thank my beautiful friend Francia Raisa. She gave me the ultimate gift and sacrifice by donating her kidney to me. I am incredibly blessed. I love you so much sis. Lupus continues to be very misunderstood but progress is being made. For more information regarding Lupus please go to the Lupus Research Alliance website: www.lupusresearch.org/ -by grace through faith
So you were quite active?
Yeah. Oh and then it was that my joints were really sore - especially my shoulders. So I had to stop doing sports.
And because I stopped doing sports, we initially thought that the weight gain was because I wasn’t as active anymore.
So we started testing what was going on with my shoulder because we thought - because I've broken my collar bone before - that maybe it didn't heal properly.
But, when we had x-rays done, it looked fine.
Then we continued as normal for a bit. I mean my mom knew there was something wrong, but we thought it just needed the usual check up and were told to go to a shoulder specialist.
When we went out to lunch with friends at Canal Walk a while after, I remember that my body felt so tired all of a sudden.
It was like I couldn't walk properly anymore.
We were sitting at a pizzeria when I started having trouble breathing - I was lying back and my skin was turning blue because I wasn't getting enough oxygen.
And then I got really scared and became unresponsive.
My mom was trying to talk to me to keep me awake, but I was tired and we had to call an ambulance. I was rushed to the nearest Medi clinic who said I looked fine, because by then that episode had passed.
They did tell us that I had a bladder infection, and transferred me to another hospital, but I knew deep down that it wasn't just a bladder infection.
It was more than that...
Yes. We were at a different hospital and met with the doctor and she was so focused on the possibility that it might be my heart that is the problem, so I did all of these heart tests.
I was then discharged and had to wear an ECG for three days - when we handed it back and waited for the results, we found out that they never switched the device on, so we couldn't get a report.
We decided to do something else because we knew it wasn't my heart that was the problem.
This was in the fourth term of the 9th grade and it was in the middle of exam time, so then at that point, I became worried because I also thought that this could be me having a bad attitude about school.
So I tried picking myself up even though I was so tired all the time.
Towards the beginning of November even though I tried so hard, I couldn't remember anything I was trying to study anymore.
My body kept shutting down because my blood pressure kept dropping. My grandmother suggested that we make an appointment with a doctor she goes to sometimes. He couldn't help us but he referred us to a really great doctor - an internist who ran a bunch of tests based on the list of symptom charts my mom created.
He was the one that said he has a strong suspicion that I had lupus and that he was going to refer us to a rheumatologist. So in January we went to the rheumatologist and he confirmed that it was lupus.
How many months did it take for you to be diagnosed?
Well from when we knew something was really wrong.
Sometimes diagnosis can take up to anywhere between six to 10 years, but not with my mom. She knew something was wrong and without her I probably would have died.
She really fought to get us to this point.
You go to school twice a week – when you’re not at school, what treatments are you undergoing and how do they help you?
So I take chemotherapy - not radiation, but in pill form and I also take anti-Malaria pills. I used to take the anti-Malaria pills every day, but the problem is that those have really bad side-effects.
I've experienced hallucinations and night terrors and it made me feel really scared, so I had to stop taking those every day and now only take them Mondays, Wednesdays and Fridays.
With the chemo therapy, the side-effects I usually experience is extreme nausea, loss of appetite and hair loss.
To counteract some of that, I usually take folic acid, which promotes hair growth.
I also take Arcoxia for when the pain in my joints are really bad because that helps for the inflammation since I also have arthritis.
Other than that, I also take supplements, especially Vitamin D because I can't really go out into the sun, so that helps to prevent me from becoming too depressed.
READ MORE on Health24: Lupus 101 - here's what you need to know
How do you cope with the stress of school work?
Well, it's still a work in progress and I'm learning how to cope with it, but I struggled during the first term of going back to school after a year of not being in school.
I wanted to be able to hand in everything on time and do everything at the same time everyone else was but I can’t. So since I'm only there two days a week, I often need to teach myself the work sometimes.
The school has been supportive and I email the teachers and ask them when they have a free period and if they can see me in that time.
They're really willing and happy to help me learn and I really appreciate that.
What are your support structures like at school? Do you have friends who help you?
Yeah. My friend Sam is amazing. In the first term - we weren't even friends yet - and she started a Whatsapp group with another friend of ours where she suggested that everyone just send the notes and all the stuff people get from teachers to that group.
She'll always ask me if I need something and she'll collect stuff from teachers if I need it.
And she's really aware when I'm not feeling well and always ready to help whenever I need her.
You mentioned that you’re quite sensitive to being in the sun?
Yes, so the thing is that 2/3 of people with lupus tend to be UV sensitive so flares are triggered by sunlight for a lot of people, so I'm not sure if that includes me because sometimes the sun will hit me and I will feel better.
I don't necessarily think it's actually the sun because I can go outside when the sun shines, but it's more about the intensity and the UV levels that have an impact.
If the levels are low, I can go out in the sun, but if it's high I need to stay indoors.
What are some of the signs of a bad flare up? What do you experience when you’re having a really bad day?
Signs that I might be getting a flare, for me, include being very tired and really low concentration levels.
There are headaches, extreme nausea and joint pain - particularly back pain. My blood pressure going down is also a red flag for a flare.
These are also signs that it is a good idea to get to the hospital as quickly as possible because there is treatment for it - steroid treatments often help, so you get pumped up with them and then you have to stay in the hospital for at least two or three days since it's given intravenously.
That combats the flare and usually takes it away for some time.
In this #AsktheDoctor segment, Dr. Alana Levine, NYC rheumatologist with a particular expertise in treating people with lupus, answers the question – What are the treatments for lupus? . . . . . #lupus #lupusvideo #lupusresearch #breakingthrough #drlevine #rheumatology #rheumatologist #preventlupus #treatlupus #curelupus #SLE #autoimmune #lupustreatments #whatislupus
When it comes to school, what’s the one thing you wish your fellow classmates and other people would understand about your condition?
It's so irritating when people often tell me that I'm so lucky to go to school for only two days.
The other day someone also asked me what I do at home and whether or not I just watch TV and I was like - are you kidding me?
I didn't really have a sassy response, but I politely replied that because I'm not in class and being taught, I have to teach some things to myself.
They don't understand that I'm not at home to play - I have to do work, and often I do schoolwork up until 6 o'clock because it takes me longer to get stuff done.
I also wish that they'd understand that just because I don't always look sick doesn't mean that I'm not.
Sometimes I'll get severe back pain or my lungs hurt because of the connective tissue disease I also have, and I don't flinch anymore because I'm so used to it, but people don't get it.
I've had to learn to control how I handle the pain because it happens so often and I don't want people to pity me or treat me differently because of it. I want them to understand - but I don't want them to patronise me.
*Minimally edited for clarity and length