Let’s Talk Lupus with Macenzie| Tanya M.
Let’s Talk Lupus with Macenzie
In our next edition of Let’s Talk Lupus we are pleased to introduce Let’s Talk Lupus with Macenzie. This monthly editorial will be an inspiring series of stories that not only raise awareness but also empower others to talk openly about their own experiences with autoimmune diseases. Macenzie will interview Canadians that live with lupus to share their stories highlighting their experiences, challenges, and triumphs while managing lupus.
Macenzie Rebelo is a Toronto-based journalist and writer. In 2018, her life drastically changed when she was diagnosed with Systemic Lupus Erythematosus (SLE). Since then, she has redirected her work to highlight those with lupus, chronic illnesses, and invisible and visible disabilities. We invite you to share your story. To learn more please email ariana.ranjbar@lupuscanada.org.
My Lupus Story with Tanya M.
“I wasn’t expecting to get this far in life,” says Tanya Mahadeo Connacher, 43, half-smiling when reflecting on the vulnerability of her past. “But, I am happy that I did.”
Back in 2000, Tanya sat in a Rheumatologist’s office anxiously waiting for her blood test results. “I was experiencing aches and pains in my shoulders and wrists.” As a tennis player, she assumed her pain was early-onset arthritis from overplaying. Instead, Tanya’s Rheumatologist handed her an ‘all you need to know about lupus’ pamphlet and mechanically explained the disease to her. At only 19 years old, she was diagnosed with lupus.
“I was in shock because I didn’t think something like that could happen to me,” she recalls. “But at the same time, it explained my whole life.” Tanya, who grew up in Pickering often frequented the doctor’s office for ‘growing pains,’ although she never received any formal diagnosis. In high school, Tanya had a friend with lupus who was very ill and often in the hospital. “I was terrified, and I thought, will I survive?” After the initial wave of disbelief, the fear began to set in, with little reassurance from her Rheumatologist. “I mean the general consensus at the time was that people with lupus didn’t live very long,” she says. “There was not much lupus research at the time.”
A few weeks later, she was prescribed the steroid Plaquenil and saw some improvement but not for long. “The first year was a very difficult one,” recalls Tanya, whose symptoms escalated quickly, leaving her extremely thin with hair loss, fevers and severe joint pain. Being so young, Tanya felt her life was being robbed of its potential. “You don’t know who you are yet and I had this whole new life to deal with.”
The pain and symptoms worsened daily and by 26 she developed pericarditis and pleurisy. Fortunately, during this time she had the support system of her family and a couple of close friends. “I am the suffer-in-silence type,” jokes Tanya. “I think most people with lupus are,” Tanya admits she lived in denial about her illness for some time, especially in her twenties. “I ignored it and ignored it and just kept pushing reality away. By 30 I was burnt out,” she says. “I had to acknowledge that I was sick, it was hard because life looked so different.” In her 30s, Tanya started to speak up more during her doctor’s appointments and took on more agency by advocating for herself. “I started having an opinion about what the doctors were telling me and I realized, I don’t have to take a drug if I don’t want to.” Tanya also started championing those who felt they couldn’t advocate for themselves in the healthcare system.
Tanya is passionate about being a proponent of lupus awareness. She is on the lupus clinic patient advisory board at Toronto Western Hospital and has dedicated many hours to volunteering with Lupus Ontario facilitating support groups and events. Tanya knows she often stretches out too thin, resulting in flare-ups. During these times, she is supported by her husband. “He is a huge advocate for me,” she says. Six years ago, Tanya stopped taking all of her lupus medications and steroids because of the complications they were causing like avascular necrosis. Although she does have lupus symptoms like joint pain, bodily aches and fatigue she prefers to be off them. “I felt pretty bad on the medication and there are so many side effects.” During her remission, Tanya became pregnant with her son at 40 years old.
Her journey to motherhood was turbulent due to lupus and her being a high-risk pregnancy. “I had to go through IVF, I couldn’t get pregnant naturally,” she explains. Her son was born prematurely at 28 weeks due to her illness she was unable to carry to full term. Although the experience was scary, Tanya is incredibly thankful to have her son. “Motherhood is exhausting, but it’s amazing,” she smiles. “My son is three and a half and he already knows that sometimes Mommy needs to lie down.” For Tanya, it is critical she is present for her son. “ I don’t want him to grow up feeling deprived because his mother is sick.”
Life may seem different for Tanya and her son, but it is just as special and full of love. “I wasn’t expecting to make it this far,” she remarks. Although lupus has drastically altered her life, it does not define it. The illness has taught her the value of health and to find joy in the simple things in life. Tanya, who is incredibly stoic considering her undeniable physical pain, carries herself with grounded confidence and a true-to-self attitude that reflects the many hardships she’s experienced in her 43 years. Today, she lives in Toronto with her husband and son. She has her good and bad days, but Tanya strives to be the best mom to her son and continues her advocacy. “There is so much comfort in knowing you’re not alone,” she says. “Because you’re really not.”
While Tanya’s decision reflects her personal journey, it is important to note that treatment plans for lupus should always be discussed with a qualified healthcare professional. Medication is typically an essential part of lupus management, and any changes to treatment should be made under the guidance of a physician.