Life with Lupus: Learning to Manage the Unpredictable
Lupus is a mysterious disease. Some people only know it as the disease that could have explained half the cases in the TV series Dr. House. This chronic autoimmune disease causes the body to attack its own organs and tissues, generating inflammation and repercussions on the joints, skin, blood cells, brain, heart and lungs to name a few.
No one really knows what causes it, whether it’s genetic or linked to environmental factors. They know that periods of stress can activate a flare up but don’t know if the disease itself develops because of a particularly stressful episode. What really makes Lupus mysterious is how unpredictable it is, since the disease can attack pretty much every part of your body. It can flare up anytime, even after a long period of being dormant. To this day, there is no cure for Lupus, only treatments that help better manage it.
Lupus: Fighting the beast
The name Lupus comes from the latin word for wolf because of the characteristic rash a lot of Lupus patients get on their nose and cheeks. Most will also get intense swelling, either from the inflammation or the drugs used to control it, and that’s only on the outside.
Wendy was 21 when the symptoms first started: arthritis, fatigue, high fevers and lupus nephritis (inflammation of the kidneys).
‟I was lucky in a way, because I was a textbook Lupus patient. It only took a few months before I was diagnosed, meaning that treatments were started quite quickly. Most patients are not as lucky, because Lupus comes in many different forms and is not easy to identify.”
Lupus is not easy to treat either. The disease is chronic; meaning people like Wendy will have to live with it for the rest of their life. It often evolves, putting patients through different kinds of pains and limitations.
‟I wanted to stay active: work full time, do sports, see my friends, and I did, but it came at a price. I was exhausted all of the time. I like comparing my energy levels to a tank of gas. When the tank is empty, there is no point in trying to do more. The only way to fill up your tank is to rest, manage stress, eat well, and follow your medical team’s advice.”
‟I may have a classic case of Lupus but my body reacts to medication in a very unclassical way. I didn’t tolerate many of the medications well, and that caused complications for me, and even landed me in the hospital. Through all that, it was reassuring to know that I had access to the best possible care. The team from the Lupus Clinic would stop at nothing to help me.”
A different state of mind
‟I’ve made tremendous progress through the years. I’ve learned to accept that the disease is not going away and to not blame myself for having Lupus. Because of this, I’m able to focus on ways to help myself manage it as best as possible.”
Thanks to different treatments, plenty of rest, and exercise and a healthy diet, Wendy is now able to live more of a normal life. She has spent a great deal of time over the years learning how to think more positively and embrace life no matter what it throws at her, and in turn, deals with the ups and downs in a more constructive way.
‟For a while, I really hated my body for what it was doing to me. It’s good to change it around and say: it’s just the vessel that carries me. In the end you have to realize that you are not the disease, you are your own person.”
Wendy used moments of sleeplessness to start writing poetry for kids. Some of her stories have even been published and she now has a better work-life balance, making it possible for her to enjoy life to the fullest. She is now a Communications Consultant and a Laughter Yoga teacher.
‟In a certain way, I could say that I’m grateful that I know what being sick feels like, because it has made me realize what is important and what is not. Every day is a blessing, that’s why I’m fundraising and I’m giving back. Every April, the MGH Lupus Clinic forms a team to participate in the Scotia Bank Charity Challenge and I’m proud to lead it along with my doctor Evelyne Vinet! I get involved in any way I can. My family has always supported the Lupus Clinic and I’m glad to be able to do the same.”
The MGH Lupus Clinic is unique in North America. Acting as a multi-specialty clinic, it brings all the specialists a patient might need under the same roof: nephrologists, immunologists, rheumatologists, bone doctor, pulmonary specialists, neurologists, dermatologist, etc. Patients get to book appointments with many specialists at the same time which is both efficient for the doctors and reassuring for the patients. In Wendy’s words, ‟It’s nothing short of amazing.”