Just trying to take in all of the above is totally overwhelming. Now, how do you explain it all to others?
Coming to terms with a devastating illness, as previously addressed in this column, is extremely difficult at best. However, even before “coming to terms” you will be asked by others how you are or what you “have”. How do you answer these questions? It is unlikely anyone, other than certain professionals and other patients will know what your disease is, so you will try to find a relatively easy to understand explanation (e.g., my body’s immune system is not working correctly; it is attacking my body; it is a rare AID that affects the skin and mucous membranes.).
This sounds like a fairly simplistic and understandable initial explanation. Unfortunately, and it took me a number of years to recognize this problem, most people do not know/understand the difference (or know that there is a difference) between AID and AIDS: Autoimmune Disease versus Acquired Immune Deficiency. In AID the immune system needs to be suppressed since it is attacking the body, while in AIDS the immune system (because of HIV) has been too compromised and weakened to defend itself against infections. One is not infectious (AID), while the other (AIDS) can be very contagious; both can be fatal. Other than close family and friends, who really cares much about a very rare illness which they cannot “catch”?
When explaining it is interesting how with AID the treatments usually involve attempts to weaken the person’s immune system (which is attacking the person’s body), while AIDS is an entirely different entity (with the immune system needing to be boosted since it is no longer able to defend the person’s body). The only thing in common, besides initials, is that both do involve the immune system.
Personally, I find it easiest to just say it is an autoimmune disease like Arthritis or Lupus. Since I have arthritic hands I can just put out my hand and say it is not a disease I can give anyone any more than I can actually give someone Arthritis. If people want more information, which is unusual, I usually just refer them to the website. Most people never look at it (and that includes doctors in specialties other than Immunology, Rheumatology or Dermatology). Those who do actually take the time to look at the website learn a lot very quickly.
If, as a patient, you feel compelled to further explain your particular autoimmune disease, a few copied/ printed pages may suffice, or you can write a succinct explanation on index cards which can easily be carried around in a wallet. This is actually quite easy to do; just write the essential facts.
Question: {quote}How can we educate the lay public on the differences between AID and AIDS?{quote} Education is part of the mission statement of the foundation (IPPF), and not only have people never heard of these rare autoimmune diseases, they don’t know the difference between an autoimmune disease and the specific one caused by the HIV virus. This education is long overdue given the initials, and no one appears to be educating the world, our neighbors, coworkers, friends or families.
It is disturbing when I receive emails or telephone messages from patients, because others are scared that they will contract their Pemphigus or Pemphigoid. While there has been education about MS, Lupus, Arthritis and other autoimmune disorders, the more rare ones remain a mystery – and a scary one at that. When I went on local television in Pittsburgh in 2002, the co-anchors of the news that night were so intrigued by the information from the channel medical correspondent, who did her homework, that they extended the segment just by virtue of their curiosity and questions. I was even the lead story the evening after the Pittsburgh Steelers had won their first game of the season the day before! I am writing this just days after the big Super Bowl win, which reminded me of this story.
From a psychological point of view all of this puts people with these rare autoimmune diseases at a distinct disadvantage. It is probably why such a high percentage of those who have been lucky enough to get to remission seem to become inactive in the organization. How can this be changed? Again, education seems to be the most needed agent for change. We need to reach as many people as possible. In the last Quarterly, I asked those who could to contribute of their time and any other resources which may help to make a difference. This is an immense task, because how can people be expected to learn about and make a positive difference with these rare autoimmune diseases when they are still having so much trouble understanding the differences between AID and AIDS?
