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 an increased risk of infection, bone loss, and weight gain to depression, hair loss, and even infertility.
The activity of lupus is often 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 patient’s condition.
Some of the most widely used medication for lupus patients are immuno-suppressants. These slow down the immune system 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 prednisone. There’s even a name for it: moon-face, where the face gets noticeably rounder.
Even when the actual symptoms of lupus itself are under control, patients can be left more vulnerable to other types of ailments and might take longer to recover from something as common as the cold.
Probably the most difficult part of living with lupus is the challenge of being sick while often looking perfectly well.Click To Tweet
Too frequently lupus patients hear “But you don’t look sick“. While some patients do have the butterfly rush, that often gets mistaken for a skin condition and dismissed as not serious and lupus symptoms 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 can be managed. Life does change and limitations change, that doesn’t mean you can’t be happy and fulfilled. Find your own new space in the world.
My personal mantra is to stay positive, practice gratitude and listen to my body. It’s good medicine to live fully, laugh often and love deeply.
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