‘The doctor said, ‘You’ll get fat and never dance again.’: Nephrotic syndrome warrior proves illness ‘does not define me’

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“I can’t remember exactly how many days had passed after my kidney biopsy, everything is still quite a blur. But I do distinctly remember being told by a doctor I must go on a drug called prednisolone (which is a steroid) and that I will become fat and potentially not be able to dance again. That day changed my life forever. But first, let’s rewind…

Stress is something I don’t cope with very well and from as early as I can remember, maybe around 12 years of age, I have always been on the more stressed-out side of life. Little did I know, this could have been a contributing factor for a chronic illness that would change my life forever.

Growing up, I’ve always had a subconscious pressure to aim high and achieve great things. Perfectionism is all I knew growing up, and if something didn’t go according to plan, it would most likely result in major upset. Or worse, a panic attack.

Fast forward to my college years and the stakes to get good grades in my A-Levels were higher than high. Outside of college, I had attended dancing lessons since the age of four; this had always been a major hobby of mine. I had decided I wanted to turn this life-long hobby into my career, and the dance exams I took at my local dance school counted towards UCAS points to help me get into theatre school. It was a lot of pressure for an 18-year-old to face inside and outside of college.

Courtesy of Jasmine Shen

A lot was going on in my life and my timetable was absolutely hectic, but I will never forget the day I had a college dance rehearsal for our show and I turned to my friend and said, ‘I don’t know if you get what I mean, but my legs feel really tight?’ My friend gave me a bizarre look and said, ‘I don’t know what you mean, sorry!’

Around this time, I started noticing my tiredness was getting out of hand. This was potentially due to fact I commuted to college via train every morning at around 7:45 a.m., which meant I’d have been up and ready to leave the house and walk to the station by 7:00 a.m. most mornings. I’m a person who thrives off a great night’s sleep, but this was not the case during my college years.

Courtesy of Jasmine Shen

My days were stupidly long, as a typical day would span from 6:00 a.m. until midnight. Over the years, the lack of sleep had really caught up with me to the point where I would find myself being politely nudged by my friend in psychology class after she discovered I’d fallen asleep at the desk…again!

All the built-up stress and lack of sleep lead to the biggest mental breakdown I have had in my entire life. I was 18 years old, tired, didn’t know why my legs constantly hurt, and stressed out to the max. It all got too be much and the situation is a blur, but I remember having a falling out with one of my teachers; in which I can say definitely got out of hand on my behalf due to how tired and stressed I was at the time.

Generally speaking, we all get puffy eyes the day after we’ve been crying our eyes out, but my kind of puffy eye was different. It wasn’t going away. After a couple of days of my eyes being very swollen, my mom decided to take me to my GP to get an opinion on what could be causing my puffiness. I should also add that prior to this visit, I had seen the GP for a potential thyroid issue blood test, which we thought may have been causing the extreme fatigue and my swollen throat.

Courtesy of Jasmine Shen

We had waited patiently to be seen by my GP, and after lots of questions about changes in my lifestyle and diet, the best my GP could conjure up was, ‘It was one of your allergies playing up and it will go away soon.’ A second opinion was clearly needed.

We went back the next night to see another GP to hopefully make sense of my extremely swollen eyes. I had been misdiagnosed. The next GP investigated the blood results from my thyroid blood test and told me something I will never forget… ‘You need to go to hospital right now, your albumin level is way too high and I think you may have Nephrotic Syndrome.’

My first thoughts were, ‘What the heck is that?’ and ‘Let’s hope it goes away soon.’ The first time staying overnight in a hospital was scary, and saying goodbye to my mom was the hardest thing I’d ever had to do. Luckily, there was a lovely lady called Beryl who kept me sane throughout my extended and uneasy stay in the hospital.

Courtesy of Jasmine Shen

The longer I stayed in the hospital, the worse my swelling got. It was no longer just my eyes that were swollen, it was now my entire body, head to toe. I had gained 28 pounds in water weight. I was unable to walk and was extremely short of breath. Something in my body was not right. I had been told I might have something called Nephrotic Syndrome, which is a form of kidney disease, but they could only determine what stage I had (I didn’t even realize there were stages of kidney disease at this point) by having a kidney biopsy done.

Courtesy of Jasmine Shen

Prior to this I had a phobia of needles, and even having the thyroid blood test done was a big enough deal for me. I had been a little traumatized when a doctor at the hospital tried to take my bloodsand left my arm looking like it had gone through war. And after the nephrologist had explained to me what happens during the kidney biopsy, my fear of needles increased. Pre-care for the biopsy was complicated and took longer than expected as my hands had become so swollen it was virtually impossible to fit a canular into my veins. We got there in the end, and the biopsy proceeded the same day.

I can’t remember exactly how many days had passed after my biopsy, everything is still a blur, but I do distinctly remember being told by a doctor I must go on a drug called prednisolone which is a steroid and I will become fat and potentially not be able to dance again. This doctor should have definitely been more careful with her words, as I was already traumatized by the experience of staying in hospital for the first time. 18-year-old me burst into tears and thought my life was over.

It was particularly hard for me to hear this news as that September I was to start my professional dance and musical theatre training at a prestigious theatre school in London. Spoiler alert – three years later I gained my degree and got my first professional job straight out of college in SIX the musical. I can only thank the doctor for giving me a reason to prove them wrong.

Courtesy of Jasmine Shen
Courtesy of Jasmine Shen

Being on prednisolone is not easy. During my time at university, I had experienced many of the unpleasant side effects that come with the long-term use of a steroid medication. From back injuries to moon face and everything else in between. One of the things that affected me the most was being scared of the weight gain caused by prednisolone. The doctors voice would constantly drone in my head… ‘You’ll get fat and never dance again.’

Unfortunately, over time there were a couple of stages where I had bouts of disordered eating, had lost an unhealthy amount of weight and lost my sense of self. Prednisolone and my bad relationship with food was taking over my life. Despite the many years of suffering in silence, I am very fortunate and extremely grateful I have best friends who helped me get through this helpless time by socializing and getting me out of the apartment. Overtime, as the prednisolone dose lowered, my relationship with food had become somewhat normal again.

Courtesy of Jasmine Shen
Courtesy of Jasmine Shen

People who are on prednisolone often ask me, ‘What did you do to lose weight?,’ which is a question I don’t particularly love as I believe everyone is beautiful from within and the number on the scale does not and should not define your self-worth. For me, this question is a tricky one as I did not gain weight whilst on prednisolone. I have learned that no two people have the same experience despite being on the same medication.

Everything went a little downhill every time I tried to taper my prednisolone dose below 10mg; the symptoms of swelling and tiredness would all come flooding back. I relapsed three times in a one-and-a-half-year time period, which was extremely frustrating and meant I had to introduce a second line agent drug. After a lengthy discussion with my nephrologist, we decided I was to go on a chemotherapy immunosuppressant called cyclosporine. I had never heard of this drug before, but it is the drug that has changed my life for the better. Thankfully, I have since responded very well to the drug and was relapse free for the better part of four years.

Then autumn 2020 happened. We were in our second pandemic lockdown in the UK, my anxiety was through the roof, and I caught a cold. This was enough to cause me to relapse after being in remission for so long. I had never been so disheartened. The symptoms came back, I was extremely swollen to the point I was unable to walk short distances, and was told by my nephrologist I needed to go back on prednisolone. Going back to square one broke my soul. Going through a relapse for the first time after being in remission for so long is terrible, but I know this may be a reoccurring thing in my life and I need to learn how to manage my emotions and health accordingly and as positively as possible.

Courtesy of Jasmine Shen

In 2018, my ‘Jasmine’s Journey’ YouTube channel was created. After months of research, I could not find any resources on YouTube where someone spoke about their day-to-day life living with kidney disease. I strongly felt there needed to be more kidney disease awareness and normalization for those going through what I go through every day. So, in of February 2018, I uploaded my first YouTube video. It was just me, my camera, and my thoughts.

I talked about my experiences with Nephrotic Syndrome, and little did I know this one video would turn into several more over the years and positively impact many people around the world who live with this condition. I now dedicate my spare time to uploading YouTube videos about my life with kidney disease, posting low salt-based food reels on Instagram, and working in close knit with amazing kidney disease charities such as the Nephrotic Syndrome Foundation based in California and the Nephrotic Syndrome Trust based in the UK.

Courtesy of Jasmine Shen

I would love to say my journey ends here, but this is something I will have to deal with for the rest of my life. I could let kidney disease tie me down, but instead, I choose to accept my fate and carry on going for gold. Yes, kidney disease is a part of my makeup, but it does not define who I am or what I can achieve in life. Often, I thank my kidney disease for coming into my life as it has taught me to have empathy towards others who have struggles of their own, and also how far I have come on my journey.

Invisible illnesses can be frustrating and there will always be times when people won’t understand what one has been through mentally and physically; sometimes people will have no empathy towards you and brush over your issues, but as long as you keep reminding yourself you are a warrior, to keep your chin high, and stay as positive as possible, you can do anything you put your mind to. Like my dad says. ‘If it doesn’t matter in 10 years’ time, does it really matter?’ Look after yourself, stay healthy and happy and never forget who you are.”

Courtesy of Jasmine Shen

This story was submitted to Love What Matters by Jasmine Shen. You can follow her journey on Instagram, YouTube, and Twitter. Submit your own story hereand be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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