LIVING WITH LUPUS | Bethany Sousa

How Sick Kids Helped Me with Arthritis and Lupus

Story by Bethany Sousa

Often in life, people are within the presence of those who suffer from certain illnesses or diseases, but never could imagine that, one day, it may be them conquering that same battle. Though it is never easy watching someone you love suffer, one never truly understands an illness, until they are faced with it as well.

Growing up, I constantly watched my mom suffer from Lupus and watched how it limited her, pained her, and hurt her emotionally. Hospitals were our second home and medications were her second nature, and all she could ever tell us, was how she hoped her kids would never have to face the same burden. Little did she know, that her daughter would be developing both Lupus and Arthritis at such a young age.

It was summer of 2005, when travelling with my family that I began to develop symptoms of Arthritis on a late August night. I wasn’t too sure of what it was, nor could I understand why it was happening, but I began to later realize that my mother’s fear was becoming a reality.

All I could remember was how limiting it was. How I wasn’t able to brush my own hair, how I wasn’t able to reach for certain things, or how it even impeded with my ability to walk properly. It was so hard, as a 12 year old, to believe that these types of things could be happening to me. I was angry, hurt, upset, and often just felt like crying. It was with the support of my family and the Sick Kids team, that I was able to get to where I am today. But before I get into my life now, let me tell you about the process of getting here.

Returning from our vacation in August, my mother insisted on booking an appointment with my family doctor right away. When finally diagnosing me with Arthritis, my doctor referred me to a specialist, Dr. Shneider in the Sick Kids Hospital Rheumatology clinic.

Dr. Schneider and his team were everything a hospital staff should be. They were intelligent, observant, professional, thorough, caring, and most of all, comforting. They made sure that every test that needed to be done, was, that every need in regards to my Arthritis was met, and that making the experience of having Arthritis was less difficult.

When I turned 13, and was living with Arthritis for about a year, I was beginning to get the hang of it. Plaquenil and naproxen twice a day, special meal requirements, appointments four times a year, and so on. It wasn’t until late 2006, that I was in for a surprise my next appointment.

I could tell that things weren’t right that day. I spent a large portion of my day running tests and waiting for results, and knew that it wasn’t like any other appointment I have had. When the doctor finally came in and shocked my mother and I with the bad news, is when my world began to change.

Little did my mom know what was going on in my head that day in Sick Kids. I sat in the hospital room calmly, when they told me at age 13, that I had developed Lupus, as well. It might have been one of the most difficult things for me to hear, but I couldn’t let my mother know that, she was too heartbroken already.

Though this was such a difficult time for me, I could not imagine getting through it without the support of the Rheumatology team at Sick Kids. I was provided with a great Lupus specialist, Dr. Silverman, counselors, nurses, a highly specialized team of doctors, etc. I was given the most efficient care and I knew that my needs were always a priority.

In April of 2010, at age 17, I began to have a very serious Lupus flare-up and was unable to do anything but cry. My mother knew that this was unlike any other flare-up that I’ve had before, and called the Rheumatology clinic right away, to warn emergency that I would be coming down.
Right away, the Lupus clinic alerted the Emergency Department at Sick Kids, who had a room waiting for me, upon entrance to the hospital. They performed a series of tests and procedures, and told me that I would have to stay overnight for a few days.

Though staying overnight in a hospital isn’t ideal for anyone of any age, Sick Kids provided the best hospital experience that I could have. I was surrounded by such a talented and caring group of people who were always willing to help and support me, and the best type of services that could be provided, that if it weren’t for being sick, it would have felt like more of a hotel experience, than a hospital one.

I ended up staying for roughly a week, and the doctors made sure that I was fully healed before being able to leave their care.

I had always had a love and appreciation for Sick Kids Hospital, but it wasn’t until that week when I began to truly realize my love for them. Providing me with the most phenomenal team and care, a private room with a couch for my mother to stay as well, a personal television to stay entertained, and even a personalized menu in which I could order from several times daily. It truly was a hotel-like experience.

And it’s true what they say, that all good things must come to an end. Unfortunately for me, I was 18 years old and ready to transfer to an adult clinic for my Lupus. However, luckily for me, I was provided with the easiest and most helpful transition from Sick Kids Hospital to Toronto Western Hospital. As well as providing all of the necessary information and documents to my future Lupus doctor, Sick Kids provided me with a transition appointment to help prepare me for my new experience.

My experience with Lupus was made so simple because of the great team at HSC. The only thing that was difficult, was departing from the people who had become like family to me.

To think of my experience when I had began at the clinic, where I came in feeling alone, scared, worried, and unhappy, I had no idea how everything would turn around.

Sick Kids made me confident, aware, responsible, and comforted. Along with the support of my family and friends, they showed me that it is possible to live everyday with Arthritis and Lupus and lead a normal life. Because, despite our physical limitations sometimes, there are always treatments and helping hands to help us cope with anything.

So, I am now 21 years old. Happy and healthy and living with Arthritis for 9 years and Lupus for 8. Looking back at myself when I was 12, feeling weak, tired, and physically limited, I could never imagine being where I am today.

I am now in my fourth year at York University, studying English and pursuing a career as a teacher. I am able to work, to volunteer, to study, and to maintain a social life, while living with my Lupus and Arthritis.

I am so thankful everyday for the support that I have received from the team at Sick Children’s Hospital, my family, and my friends. Because it has taught me to realize that I can conquer any battle that I face. It brings me joy to know that everyone who is faced with this difficult battle is able to receive the great care provided by HSC, making their experiences, easier to face. It is not always easy at first, but it took time for me to realize that….I have Lupus, but Lupus doesn’t have me.

Poem about Courage with Lupus

Courage is finding out about my lupus and accepting it as part of my life.
Courage is using medication as a means of survival and still being happy regardless of the circumstances.
Courage is dedicating myself to my health and making hospitals my second home.
Courage is having a painful lupus flare-up in the morning and going for a swim in the afternoon.
Courage is not viewing lupus as a form of limitation, but a way to expand my view on everything else.
Courage is being happy despite anything that could be wrong with me.
Courage is accepting that being unique can be and is good thing.
Courage is accepting that I may not be able to do all that I’ve been able to do, but that won’t stop me from being who I want to be.
Courage is accepting that despite my condition, I am stronger than most.
I will never let my lupus determine my happiness or the outcome of my life.
I will live as a lupus fighter, not a lupus victim.
I have lupus, but it doesn’t have me.