Explaining Lupus to Just About Anyone How to Explain Lupus to Family, Friends, Colleagues, Children and Acquaintances thank you to Brenda Campbell. And the upus-upus-effect.com.com for this wonderful information. I would also recommend for you to sign up for their emails. They have with the kids to help you manage your own.
Explaining Lupus to Just About AnyoneI know we’ve all heard it. Those five little words of no more than three or four letters each. “But you don’t look sick.”
Explaining Lupus to Just About AnyoneI know we’ve all heard it. Those five little words of no more than three or four letters each. “But you don’t look sick.”
Lupus is one of those “invisible” illnesses. Most of the damage caused by this mysterious, chronic illness is internal. Certainly, there are external signs at times – hair loss, instability, skin rashes, and in my case, the constant companion of an oxygen tank. However, this external damage is only a fraction of what is really going on inside.
As a result, explaining Lupus is not an easy task. I know that if I share all of the symptoms and complications I have, many people will think I’m exaggerating – especially if it is thrown out there haphazardly or in a disorganized fashion. I have felt judged on more than one occasion because so many of my problems cannot be seen from the outside. I’m sure we have all experienced that at one time or another – but it doesn’t change the reality of what lupus is and what lupus does. The support of others – and their acceptance – is something we all need.
I can recall several instances when I have matter-of-factly told people of my condition only to discover that they have never heard of lupus. And those that have heard of it often do not understand it.
Lupus is not easy to define. There is no clear-cut description of what it is or what it does because it can attack so many different body systems that no two people have the exact same lupus. It has many different faces and presents itself in many different ways. It continues to evolve and change. It seems that once I get a handle on it, something new pops up.
Honestly, one of my biggest fears is that people will think I’m ‘shopping for sympathy’ or ‘pity-seeking’. This is simply not the case. But, I do want people to understand because it affects what I am able to do. My abilities can change on a daily basis – good days, bad days, really bad days, times when I’m flaring on maximum overdrive and times when I almost seem ‘normal’ – if there is such a thing.
I have found myself needing to explain Lupus in a variety of settings: with family and friends, to my third grade students, and even in social or professional situations. Each explanation may look different depending on who the audience is, what they need to know, and why they need to know it. I would like to share what it might look like in each of these scenarios. It’s never easy, but with a plan of action tailored to fit a variety of circumstances we can be prepared to explain our “individual” lupus accurately, concisely, and authentically.
Honestly, one of my biggest fears is that people will think I’m ‘shopping for sympathy’ or ‘pity-seeking’. This is simply not the case. But, I do want people to understand because it affects what I am able to do. My abilities can change on a daily basis – good days, bad days, really bad days, times when I’m flaring on maximum overdrive and times when I almost seem ‘normal’ – if there is such a thing.
I have found myself needing to explain Lupus in a variety of settings: with family and friends, to my third grade students, and even in social or professional situations. Each explanation may look different depending on who the audience is, what they need to know, and why they need to know it. I would like to share what it might look like in each of these scenarios. It’s never easy, but with a plan of action tailored to fit a variety of circumstances we can be prepared to explain our “individual” lupus accurately, concisely, and authentically.
The disease is referred to as “lupus,” the Latin word for “wolf.” When lupus was just beginning to be recognized as a medical disorder, it was thought that it was caused by a wolf bite – probably because of the distinctive symmetrical red or purplish scaly rash that at least half of those with the disease develop on their faces, also referred to as a “butterfly rash.”
Lupus is an unpredictable and misunderstood disease that attacks different parts of the body. It is challenging to identify, tough to live with, and an obstacle to address and treat.
Lupus is an autoimmune disease where the body’s immune system becomes hyperactive and attacks normal, healthy tissue. This causes symptoms such as swelling and inflammation, and damages the joints, skin, blood, heart, brain, kidneys, lungs, bones, nervous system, etc. Lupus can attack any organ or part of the body.
When the immune system is functioning properly it makes proteins called antibodies in order to battle and safeguard against antigens such as bacteria and viruses. With lupus the immune system is not able to tell the difference between antigens and healthy cells. This leads the immune system to attack healthy cells – not merely antigens – inducing swelling, discomfort, and tissue damages.
According to the Lupus Foundation of America (LFA), 1.5 to 2 million Americans have some form of lupus. The disease has an effect on both men and women, however, women are diagnosed 9 times more often then men. Lupus is usually diagnosed between the ages of 15 and 45.
Other risk factors include exposure to sunlight, some prescription medications, infection with Epstein-Barr virus, and exposure to certain chemicals.
Lupus is an unpredictable and misunderstood disease that attacks different parts of the body. It is challenging to identify, tough to live with, and an obstacle to address and treat.
Lupus is an autoimmune disease where the body’s immune system becomes hyperactive and attacks normal, healthy tissue. This causes symptoms such as swelling and inflammation, and damages the joints, skin, blood, heart, brain, kidneys, lungs, bones, nervous system, etc. Lupus can attack any organ or part of the body.
When the immune system is functioning properly it makes proteins called antibodies in order to battle and safeguard against antigens such as bacteria and viruses. With lupus the immune system is not able to tell the difference between antigens and healthy cells. This leads the immune system to attack healthy cells – not merely antigens – inducing swelling, discomfort, and tissue damages.
According to the Lupus Foundation of America (LFA), 1.5 to 2 million Americans have some form of lupus. The disease has an effect on both men and women, however, women are diagnosed 9 times more often then men. Lupus is usually diagnosed between the ages of 15 and 45.
Other risk factors include exposure to sunlight, some prescription medications, infection with Epstein-Barr virus, and exposure to certain chemicals.
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