From drastic weight gain to managing dialysis, 24-year-old university student Abu Ubaidah shares how he overcame the setbacks his kidney disease threw at him.
While most youth worry more about their grades or maintaining their friendships, 24-year-old Abu Ubaidah has his declining health to look out for instead.
Diagnosed with IgA nephropathy in 2017, Abu has an autoimmune disease where his body recognises healthy kidney cells as unhealthy. His immune cells end up attacking these cells, causing kidney failure.
As it is an “invisible disease” with no obvious symptoms, Abu initially did not realise anything was amiss with his health as he felt no signs of pain. Previous tests conducted on his kidneys also came out as normal.
It was until he was having a routine heart scan for his high blood pressure at a polyclinic, when he felt extremely faint and approached a nurse for help. This led to a consultation with a doctor and a kidney biopsy, where Abu was told that his blood creatinine levels were high, indicating a kidney issue.
“The kidney disease itself doesn’t give you many symptoms. But going on medications on the other hand… medications can give you lots of side effects!” It’s terrible, but in a sense, it’s a necessary evil that you have to take to save yourself,” Abu said.
As he had a very aggressive form of IgA nephropathy, Abu had to take very strong medication which gave him many side effects.
He recalled: “When they were going to infuse me with immunosuppressants, they referred to it as chemotherapy. The nurses had to dress up in protective garments just to administer it to me and warned me that possible side effects included bladder cancer and so on.
“But I had hope and took the medicine anyway,” he added.
After taking the immunosuppressants, Abu grew weaker as a side effect included being susceptible to illnesses. This manifested to constant tiredness — a feeling Abu was unfamiliar with until now.
Going on corticosteroids also led to his drastic weight gain. He had lost 20kg during NS, but gained it back quickly.
“I also got a lot of stretch marks, and you know how once you get stretch marks, they never disappear… So I have them all over my body and even on my knee,” he shared.
“While on steroids, your face becomes very circular — something they call ‘moon face’. It was to the extent where people couldn’t recognise me… I would look in the mirror and feel bad about how I looked,” Abu said.
Another side effect of steroids is depressive symptoms, which caused Abu to be irritable and have more negative thoughts about his self-worth than normal.
All of these had an effect on Abu in his studies and relationships with those around him. Having to juggle his physical and mental health and his studies in social work and sociology at the National University of Singapore (NUS) became a draining process for Abu.
Abu, however, managed to pull through.
He said: “There was a mental toll on me. I found it harder to focus, possibly due to a side effect from my medications or the stress from dealing with an illness. Oftentimes, I would read things and feel like I couldn’t understand it anymore, whereas I used to be very sharp in reading and could comprehend things immediately.
“It all put me in a state where I second guessed myself on whether I should even go to university… But social work is something I always wanted to do and I never felt that strong push (to pursue it) until I got sick.”
When compared to an able-bodied person who has more time to do their tasks, Abu has more to cram into his already packed schedule.
With his kidney failure, he has to undergo peritoneal dialysis to keep his body in balance. This means that he has to take time to set the machine up and connect himself to it, taking 11 hours for dialysis.
While going through the initial parts of nightly dialysis, Abu finds it hard to get any work done and thus, he can only be productive during late night hours.
However, he remains vigilant, trying to maximise the time he has to get work done by doing it in the afternoon when he is most awake and not distracted by his dialysis. Thankfully, he has been able to cope through the help of supportive friends and family.
“When you’re sick, you don’t want people to worry about you. During that period, I bottled up a lot and lashed out often due to steroids making me agitated. I was not in a good place to communicate with others like how I used to,” Abu shared.
Now, he strongly believes that it is important to talk to people and find others who have similar issues and can understand, instead of bottling up your emotions. He said he got through some of the hardest moments of his life because he could share about his struggles with the people around him.
While Abu does feel affected that he misses out on certain things his peers can do such as staying in hall on campus and going on exchange trips overseas, he does not want to be pitied or viewed any differently.
“Just because someone is sick doesn’t mean you can’t interact with them like any other normal person. There’s no need to be awkward. The battles we struggle with aren’t much different from others. Don’t pity us, just support us as you would any other friend,” he explained.
When asked about how his kidney disease has made him stronger, Abu replied: “I was a huge perfectionist before the illness, but now I can forgive myself more for things I can’t do.
“There’s a strength required in realising your limits. It’s okay to have limits and not be able to do everything you want to do at a certain time, as you might be able to do so later on. I’ve become more patient, more forgiving, more kind to myself; and I think that is a very important strength.”
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