Your Impact

My Story - By: Tanya Mahadeo

You know that feeling when you have the flu? Everything hurts and aches, you feel nauseous, your head pounds and you feel completely unwell. If you’re familiar with this feeling, then you know what it’s like to have lupus—on a good day, that is.

I’ve had lupus for 16 years, or to be more accurate, I was diagnosed with lupus 16 years ago, in 2000. Part of me believes that I’ve had it my entire life. What is lupus? It’s an autoimmune disease, a type of self-allergy, where the person’s immune system creates antibodies that instead of protecting the body from bacteria and viruses attack the person’s tissues. This causes extreme fatigue, joint pain, muscle aches, anemia and general malaise, and it can result in the destruction of vital organs.

Lupus is a disease with many manifestations, and each sufferer’s list of symptoms is different. For that reason, it’s often referred to as “The Disease of 1,000 Faces.”* Although few people have heard of lupus, worldwide it’s more common than leukemia, multiple sclerosis and muscular dystrophy combined.*

Part of the reason I’m writing about my journey with lupus is to share how this chronic debilitating disease has negatively impacted my life, but also to share how having this illness has inspired me and given me the strength to fight for myself and create awareness about how underfunded lupus is, and to reveal how many people suffer from it.

Lupus is so underfunded in Canada that no firm numbers are available. In the United States, 1.5 million Americans suffer from lupus. Of that number, 90% are women, and two out of three of those women are minorities. There are reportedly 16,000 new cases of lupus diagnosed every year. Lupus is difficult to diagnose because it mimics many other diseases, so it’s impossible to say with certainty how many people have it but haven’t been clinically diagnosed.

My story begins before my diagnosis. I was a sickly child; I always had a cold or an infection. I was diagnosed with lupus at 19 after experiencing severe joint pain, fatigue, fevers, night sweats and hair loss. I found out that I had lupus and arthritis. Arthritis at 19? Yup—the two go hand in hand. Once you have one autoimmune disease, you’re susceptible to developing others.

I was put on a drug called Plaquenil, an anti-malarial medication that wasn’t developed to treat lupus but does mask its symptoms. Shortly after my diagnosis I became more ill, which is known as a “flare” of the disease, when the lupus becomes “active.”

I was in incredible pain and often unable to dress myself, walk or get out of bed. I constantly had fevers. I had lost most of my hair and about 30 pounds in three weeks, making me dangerously thin. My personal life began to suffer. People I thought were my friends began to disappear, and I became insecure about sharing my diagnosis with anyone. If I was around anyone who had the slightest sniffle, I would immediately become sick because of my compromised immune system. So, I began to isolate myself.

As time went on, I began to learn how to live with my lupus. It wasn’t easy. Now, years later, I realize that I was in a circle of grief, going through the stages over and over but not being able to master acceptance. How can you with a chronic, always changing illness?

A few years later, I had another flare. This time I was hospitalized. I had protein in my blood, and it appeared that my muscles were breaking down. The doctors couldn’t explain why. I was put on a drug called Imuran, which weakens your immune system but may lessen the aggressiveness of the lupus. I took this drug for 10 years. Recently, I stopped taking it when I finally took my health into my own hands and looked up its side effects. I couldn’t believe what I read: I was being treated for lupus with a drug that increases the risk of lymphoma and brain infection! This hit home the reason we need a cure for lupus—or until that day comes, a drug formulated specifically to treat this disease.

At the time, I thought Imuran was the answer and that I could live a healthier life with it. I was wrong. Even on Imuran, I continued to flare and get sick, be admitted to hospital and develop new health complications.

In 2013, I had a massive and frightening flare. At that time, my lungs and heart had been compromised by the lupus. I developed pleurisy (inflammation of the pleurae, which impairs the lungs’ lubricating function and causes pain when breathing) and pericarditis (inflammation of the lining around the heart, which causes chest pain and fluid build-up around the heart). These were treated with intermittent doses of prednisone, a powerful steroid. I was told that I would continue to develop pericarditis and pleurisy periodically throughout my life, until my heart became too weak to continue beating.

I became so sick in 2013 with pericarditis and pleurisy that I was put on 120 mg of prednisone orally. When I didn’t respond after three days, I was prescribed 60 mg orally and 60 mg of solumedrol (prednisone by IV). I could no longer work, because my immune system had completely shut down. I was confined to my apartment, where a nurse came to give me my IV so I wouldn’t catch an infection at the hospital.

This was one of the lowest points in my life. The prednisone turned me into an insomniac, and I gained 60 pounds in a short period of time. One of the most hurtful things I recall was running into someone I knew on the train, who said, “Wow, you used to be so beautiful, and now look at you—you’re so big.” It was one of many painful comments I endured during this at you—you’re so big.” It was one of many painful comments I endured during this period. It wasn’t enough that I had a disease that no one had heard of, or that I had been sick my entire adult life, but now I knew what people thought—or what I believed people thought, based on one ignorant and insensitive person’s comment.

That difficult moment taught me one of the greatest lessons of my life: to have compassion and empathy for others. You can never know what’s really going on in someone’s life, so don’t judge them and try to be kind.

To this day, even though I’m stronger, smarter and calmer, remembering the pain of that moment can reduce me to tears. Since then, I’ve had a hard time looking at myself in the mirror with kindness, but I’m working on it.

In 2014, I took matters into my own hands. At that point, lupus hadn’t killed me—even though I sometimes wished it had—so I had to find a way to live with and manage it better. I became obsessed with reading research reports, analyzing drug interactions and symptoms and learning more about alternative remedies. I stopped taking all of my medications except prednisone, because withdrawal from it is brutal and not something I’d recommend. My reasoning was that if I still had flares while taking the medications, why put up with their side effects?

To say that lupus frustrates me is an understatement. In addition to living with chronic pain, I constantly feel like I’m failing in some area of my life and letting people down. My symptoms sometimes cause me to miss work and cancel plans with family and friends. So I’ve decided to turn my frustration into anger, and this anger won’t allow me to keep quiet. Now I talk about lupus all the time, to help educate people and bring awareness to this debilitating disease that flies under the radar.

I have lost so many things to lupus: my hair; my memory; half the capacity of my left lung; the full function of my heart; my left ovary and fallopian tube; a piece of my bowel; my adrenal function due to prolonged steroid use; bits of skin to biopsies. I have collapsed veins from multiple IVs. I have early onset osteoporosis, also due to prolonged steroid use. My self-esteem has suffered, and I’ve lost a great deal of compassion for myself.

I shouldn’t have to lose anything else, should I? There’s one thing I haven’t mentioned yet: my age. I’m only 34.

I have had some luck though – I have a family that is loving and supportive no matter what, friends who are always there for me and willing to change their schedules to accommodate my illness and a wonderful partner who loves me unconditionally and fights for me, sometimes harder than I do. I am grateful.

Please share my story to help raise awareness about what it’s like to live with lupus, and how it affects me, my family, my friends, my coworkers and all other “Lupies” (that’s what we call ourselves) out there.

*Source: Lupus Ontario

The annual Walk for Lupus is Lupus Ontario’s largest fundraiser.  The money raised will be used to support Lupus Ontario programs  which are designed to  improve the lives of patients living with lupus.  Your donations dollars will be used in the following areas:

Patient Support Programs – Lupus Ontario runs 22 support groups across the province.  In addition, over the past 3 years we have handled over 2000 telephone support calls.  Our support programs are especially important for the newly diagnosed lupus patients who have many questions.  In addition to providing moral support,  Lupus Ontario helps patients work through challenges such as  lifestyle changes, disability programs, and drug coverage.

Geoff Carr Fellowship – Annually Lupus Ontario provides funding for a rheumatologist to study at one of 5 Lupus Clinics across the province.  The fellow, under the supervision of  lupus specialists,  sees lupus  patients and  participates in lupus research projects.

Education - Each year as part of the Annual General  Meeting,  Lupus Ontario holds  a medical symposium where lupus specialists and other health care providers provide valuable information to lupus patients and their families.  We also publish brochures and the Lupus Facts Booklet which provides valuable information  about lupus impacts and treatments.

Lupus Clinic Funding – Lupus Ontario provides funding to the lupus clinics in Ontario.