LIVING WITH LUPUS
A Male Perspective
By Chaudry Semalulu
Although lupus is the disease of 1000 faces, it often affects women more than men. So, of course, it’s difficult to understand what it’s like to me a male with lupus. Chaudry Semalulu shares his thoughts on what it is like to live with this disease. As you read on, you will understand that although we may suffer in different ways, the feelings we often have are quite the same.
My lupus story begins about one year before I was diagnosed. Around April of 2006 I spent a week in the hospital due to insomnia and during this time doctors discovered I had suffered a mild stroke. They could not, however, figure out the cause.
Some time passed and about a year later I started to feel sick again but doctors still could not figure out what was wrong. It was not until they noticed that my kidney function was poor that they put the pieces together.
I’ll never forget those words, “we think its lupus.” It changed my life forever. At first I thought these doctors were crazy because like many people I had never heard of this disease before. So here I was a 22 year old male being told that I had a serious illness with no cure. Up to this point in my life I had always been healthy. I never got sick and I always kept myself in shape with regular exercise and sports, so the following months in the hospital were the most difficult times in my life.
Because of lupus, I have struggled with lifestyle changes. Before I became ill, I played university football and was a reservist in the Canadian military. Now it is a constant struggle to simply run around the block and I no longer have the energy to play basketball with my friends and siblings. Although I am proud of my brother’s and sisters athletic achievements, I am also extremely envious because I feel I could have done the same if my life were different.
I had to deal with the real possibility of dying at a young age which was very frightening. I’ve also had to struggle with the physical changes of lupus, as do all people with lupus medications. At times, I was unrecognizable, even to those who know me well. I was so puffed up people could not recognize who I was and they looked at me like I was odd. Although I’m a male with lupus, I also struggle with the physical changes. This has really hurt my confidence because I feel very ashamed. I know it may sound superficial but every time I look in the mirror I am constantly reminded that I have lupus.
I don’t know where I would be without the love and support of my family and friends, especially my own father Dr. Semalulu. He is a pathologist so he understands the science of the body and he always put his two cents in when doctors were making decisions. In fact, he knows me so well that he was the first person to notice that my feet and ankles were beginning to swell which is often a symptom of lupus nephritis. I am also tremendously grateful for my mother and grandmother, who have both helped me in my fight. They always comforted me by preparing home-cooked food, so I would never suffer from dreadful hospital meals. They also reminded me to take my medication to get better.
My friends have been fantastic as well. Most of them came to visit me in the hospital and they have all been very understanding. I have also forged good relationships with all the doctors who are monitoring me on a regular basis. They have been very thorough with my care, even with the littlest of details.
I have become more dependent on others, and I think that has been an important lesson for me. Lupus is a civil war within one’s body, but that person cannot fight the battle alone. It takes support from others to make things a lot easier. Whether it is the doctors or nurses, or family and friends, you need help. For me, that was hard to take because I always wanted to feel strong, independent and that I could take care of others instead of the other way around. This is a major adjustment and I’ve learned that needing help from others doesn’t make me less of a man. I am ill, but it is not my fault; I’ve had to struggle with that reality. This is why I feel that in many ways, having lupus has made me stronger mentally.
Sometimes I feel like I’m trapped in a useless body. But I remind myself that there are worse things in the world like war, poverty and famine. I thank God every day I am in Canada so I can receive the treatment I need to live as normal a life as possible. I know that despite lupus, I still have control over my life, so I vowed to work hard to become as healthy as I can possibly be and get back into shape.
Chaudry Semalulu is 23 years old and lives in Ottawa, Ontario. He was diagnosed with SLE in 2007. He attended University of Ottawa until 2006, when he graduated with a degree in Social Sciences.
