Women's Health Matters

Text Size
Jump to body content

Living With Lupus - Dancing With the Wolf

By Erin

I am 18 years old and I was diagnosed with lupus at age 7. After 11 years of illness, I can't even remember what it feels like not to have it. Lupus is a chronic autoimmune disorder, and I start every day feeling like I have the flu. Some days it lasts only a few hours...sometimes it doesn't subside at all for days or weeks or months at a time.

Everyone knows what it is like to have the flu - the muscle and joint aches, the fever, the fatigue that makes you want to stay in bed forever and that horrible all-over-sick-feeling. Flu sufferers can console themselves that at least this feeling won't last forever. But what if it did? How would that change their lives? Many lupus patients face this challenge.

With lupus, I don't know how I'm going to feel from minute to minute, because that's how fast it can change. I might be sitting in class or talking with friends when suddenly I feel incredibly sick. Sometimes it feels like the room starts to spin, my vision blurs, I feel nauseated and the pain in my head can be overwhelming. This is the start of a lupus migraine and there is no warning.

Sometimes I will suddenly get hives all over my body and feel sick all over, or my eyelids and face will swell as if a bee had just stung me. Other times I will suddenly feel so exhausted that I can hardly move. I may get localized pain in one joint or I might hurt all over. I can get chest pain that makes it hurt to breathe, or severe abdominal pain.

It is such a hard disease to explain - people do not understand why I am sick so much, or why I could do so much one day and so little the next. I have been called lazy and accused of not making an effort.

The lupus name is derived from the Latin name for the wolf, lupus canis. Lupus patients often have a facial rash that causes reddening of the cheeks and across the bridge of the nose, in a shape similar to the mask markings of the wolf.

(My rosy cheeks are often ironically mistaken for a sign of good health and people will tell me how well I look when I'm feeling terrible.)

I use the wolf comparison to describe lupus for several reasons. The wolf is one of the world's most misunderstood creatures and has suffered greatly as a result. Because of a lack of awareness of the disease, lupus patients are also often misunderstood and are accused of being lazy or hypochondriacs.

Wolves have become marginalized by man's disregard for their habitat and needs. Similarly, many lupus patients feel isolated and overwhelmed by their disease and become marginalized as a result.

Finally, lupus canis (the wolf) is a symbol of strength, courage and endurance - qualities that patients need to face the challenges of living with lupus.

By Erin Wiley (used with permission of Lupus Ontario.)

Read more Personal Stories here.

If you would like to submit a story of your own, we would love to hear from you. Please see our guidelines for submission.

Jump to top page

share and learn

Join the discussion

Share knowledge and talk about your health-related experiences with other women.

Discussion forums

  • A publication of:
  • Women's College Hospital