Life with lupus or any other chronic disease can be very difficult. The medication and treatments can cause as many health problems as the condition itself, with everything from increased risk of infection, bone loss, and weight gain to depression, hair loss and even infertility.
Even when the actual symptoms of the lupus itself are under control, patients can be left more vulnerable to other types of disease and might take longer to recover from something as common as the cold.
The activity of lupus is measured in flares – periods of time when the immune system is actively attacking the body. Flares are mostly unpredictable and what triggers them can vary from person to person. For some it might be weather changes. For another, it may be stress or lack of sleep. The symptoms that signal flares can also vary wildly. So while one lupus patient may only have mild headaches or joint pain, another might have fatigue so severe that they can’t get out of bed or muscle pain so fierce that they can’t function. Or there might not be any noticeable symptoms at all. A flare can last anywhere from a day to weeks or even months and while medical treatment can help, it takes time for doctors to find the right combination of medications for a particular patient’s condition.
Some of the most widely-used medication for lupus patients are immuno-suppressants. These slow the immune system down and quiets its activity in the body. On the good side, this keeps the immune system from attacking the body. On the bad side, it also means that the immune system has trouble attacking foreign invaders as well, meaning that lupus patients are at higher risk for infections of all kinds and can take much longer to heal from infections than someone without lupus. There are other side-effects as well, for example weight gain, hair loss, bone loss and mood changes. Each patient experiences their own level of side effects, but weight gain is among the most common, especially for those on the steroid predinsone. There’s even a name for it: the moon-face, where the face gets noticeably rounder.
Probably the most difficult part of living with lupus is the challenge of being “sick” while often looking perfectly well.
While lupus can and does affect the skin, nearly all other symptoms can go unnoticed by others. Coupled with persistent myths about what lupus is, this can isolate lupus patients from friends and family who don’t understand why a lupus patient is too tired to participate in the same activities as they did before – and who might even accuse them of over-exaggerating their symptoms to begin with. Lupus patients may feel the need to hide their condition from their loved ones or from employers, which can lead to depression and stress, and in turn, make their illness even worse.
While all this sounds dire, with proper medical supervision, support and good self-care, life with lupus doesn’t have to be all that different from any other kind of life.
Barely able to breathe, I stumbled into my doctor’s office after a two-hour train ride from my college campus in upstate New York. My doctor took one look at me and started making arrangements for me to be checked into the hospital. Over the next few days I was bombarded by test after exam after test. Finally, the doctor confirmed that I had Systemic Lupus.
A year before, I was a happy-go-lucky high school senior with low energy (what my mother liked to call “laziness”), some sun sensitivity and, some unusual hair loss. I was already being treated for juvenile arthritis, but it was the hair loss that signaled to my doctor that there might be something more. However, blood tests came back borderline normal, so nothing was done. Then, in my freshman year of college, I started having trouble breathing while lying down and a fierce tightness in my chest whenever I tried to take a deep breath. I ignored it until the problem got so bad that I had to start propping myself up with pillows at night. When I overheard my roommate calling her parents about me “choking in my sleep”, I finally pulled myself together enough to ride the train back home.
My diagnosis came with my own unique set of lupus symptoms; the chest tightness was diagnosed as Pleurisy, inflammation in the lining that surrounds the lungs. Overnight, my medications tripled. On the plus side, once I started being treated for lupus, all my arthritis (which had been severe) vanished. What caused the change in my blood that triggered my lupus? Did I have lupus all along? No one else in my family had lupus – why did I? There were these and many more unanswered questions.
That was over ten years ago and I’ve been through a lot since. My case would definitely qualify as one of the more dramatic lupus stories out there. I’ve been through harsh treatments, lost some kidney function, watched my whole body change dramatically from illness and medication and had my life turned upside down.
At the same time, I’ve been forced to forge my own path in life; finding innovative ways to survive and thrive without sacrificing my health. I’ve discovered strength I never knew I had and found friends and family who unfailingly support me.
Knowing I might be limited tomorrow, I’ve learned to make the most of right now.