- Diseases, Disorders & Conditions
Educating others about Lupus
As if living with the chronic debilitating symptoms of one or more autoimmune disease is bad enough, the majority of people affected by these diseases also have to deal with people that are either clueless or just plain insensitive. This could be people we deal with every day either at home, school, work, or anywhere else.
Living with Lupus is hard and when you add all the side effects of the medications to an overtaxed system, the term “sick” takes on a whole new meaning. Oftentimes, the medications prescribed to treat these illnesses can be worse than the disease itself.
Lupus sufferers have unpredictable bouts of the disease called “flares” that are followed by periods of remission. Flares can be triggered by many things: the environment, sunlight, stress, medications, pregnancy, and even other illnesses. These flares can leave the Lupus patient suffering from extreme fatigue, weakness, pain, brain fog, and sensitivity to the environment to name a few. The flares can last days, weeks, and even months especially if the patient is not on medication or was just placed on medications.
When a Lupus patient suffers a flare, routine everyday tasks can become exhausting. The fatigue and weakness frequently accompanied by pain can be debilitating. Sometimes, the effect of this sickness is not evident in the outward appearance of Lupus sufferers and because of this, they are often one the most misunderstood people on the planet.
People with Lupus look like everyone else. They have families, pets, jobs, and some may even attend school. They carry on and go about their everyday life while unbeknown to many, suffer in silence.
Because the debilitating effects of a flare sometimes is not reflected in their outward appearance, Lupus patients are often perceived as being lazy or habitual whiners, always looking for excuses not to perform or be absent from work or school. Since they look "fine," oftentimes they are either ignored or shown no sympathy when they complain.
Because flares are so unpredictable, a person with Lupus can walk into their job and something as simple as the fluorescent lights in the room can make them literally sick. Their eyes and skin can become extremely sensitive and cause them pain and discomfort.
The sun can be a Lupus patient's worst enemy. If they are exposed to the sunlight long enough, it will send them into a flare. Within minutes, some will begin to feel fatigued and weak with an overwhelming need to lie down and rest. Painful muscles and joints can develop due to inflammation and walking even short distances becomes exhausting.
A person not affected by Lupus and not educated about this illness will not understand and sometimes, their attitude toward the sufferer becomes cold and insensitive. This lack of understanding can be frustrating to someone suffering from Lupus, as it is not only difficult for them to describe how they are feeling but also difficult to convince others that they are sick. It is more so difficult particularly if the other person is not willing to listen.
Then how does a Lupus patient deal with these seemingly insensitive types? Do they allow the fatigue, dizziness, and pain reach a breaking point to become believable to those around them?
Finding a different approach may be the solution. If you are ill with an autoimmune disease and are facing this problem, one solution would be to bring the topic up then hand that person information about your condition. Sometimes when the information comes from another source, others would probably be more willing to listen. I know because I decided to try this approach myself.
In dealing with a difficult co-worker, I decided to search for ways to educate this person. Telling them I had Lupus, was not enough. When I tried to describe my symptoms to them, I did not sound very convincing because I did not look sick.
In my search, I came across an article in the internet titled “How to Help People Understand Lupus” written by Lucky Angel, a writer in eHow. The writer gives simple but very effective and sensible instructions on how to help others understand Lupus. I found this article very helpful and decided to send my co-worker the link. The end result was a success.
There is a vast amount of information out in cyberspace that can answer many questions about this condition and help you help others better understand this disease. Two excellent websites to research are www.lupus.org and www.couldihavelupus.gov.
So, send those links out to your family, friends, and co-workers and be patient if this approach does not work. Not everone will understand.