Painful and scary symptoms no one seems to be able to explain or understand; a diagnosis you have never heard of before; understanding the actual illness; treatment options most of which have not been FDA approved or may be considered experimental; side effects to consider; possible remission but no cure. . . Just trying to take in all of the above is totally overwhelming. Now, how do you explain it to others
Before you’ve even adjusted you will be asked by others how you are or what you have. How do you answer these questions 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.)
I find that some people are even confused on the difference between autoimmune disease (AID) and acquired immune deficiency (as in AIDS). [See Terrys full article about AID vs. AIDS on our website at www.pemphigus.org/aid or call 916.922.1298] It is disturbing when others are scared that they will contract pemphigus or pemphigoid from us.
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. From a psychological point of view all of this puts people with these rare autoimmune diseases at a distinct disadvantage. Now you need to cope with the fears of others as well as your own. Like most fears, they can often be addressed with a good dose of information.
Personally, I find it easiest to just say pemphigus 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, I usually just refer them to the website. Those who go learn a lot very quickly. Education is part of the mission statement of the IPPF. From the website you can get and give out key points to raise awareness and minimize fear in others.
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 (or use the sample at the left).
By the time this article is in print, I will have presented at the University of Pittsburgh Dental School for dentists receiving continuing education credits. I am not an expert on dentistry, but I understand the challenges of this disease and I have help and support from Janet and my fellow Board Members including Dr. David Sirois. I have made this opportunity happen through sheer persistence. I feel very strongly about patients getting their diagnoses in a more timely fashion.
I truly believe we are all capable of making a difference for others by giving our time and energy to help people — both doctors and our community — become more aware of diagnoses and challenges. Whether it is time, money, or other resources, every little bit helps! My hope and belief is that we can all touch others in positive ways and that whatever we are able to contribute of ourselves will make a difference.
