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BOUNDARIES: Because it is OUR business

April 13, 2013 By: kajay Category: Tips

When I first got Morgellons, I was so desperate for help, for someone to acknowledge that this was real, that I told everyone close to me. Later I wondered what I hoped to gain from that. What if they did acknowledge it was real? For one thing, I would have immediately been prevented from reporting to work until medical doctors stated in writing that I was okay. My family would have snuck around and avoided me rather than hurting my feelings.

Instead, they did not acknowledge it. No one did.

Do you know why your medical doctor, dermatologist, pest control operator (PCO), and even entomologists all think we are crazy when we describe our symptoms? It is because of an article that appears in all of their trade databases. It is not because they are ignorant or mean. It is because they take what we say, go look it up, and come back believing what they read. Until their databases remove that article and replace it with one based on the reality of Morgellons, many of the members of those professions will go on responding based on what their most trusted resources tell them–because unless they have more information about Morgellons from other sources, that is what they will believe, and they will go on compassionately suggesting we seek psychological counseling.

Sometimes we still need more ordinary help from these professionals. But guess what: I no longer tell them about Morg. I no longer discuss it with my boss or my family. I have dealt with and continue to deal with this on my own, and with you who know it is not in our heads. I now tell people only what they need to know–no more.

If someone invites me to their home, I don’t have to say, “Sorry, no can do. I have Morgellons.” I can see the looks on their faces now. No, wait. I can REMEMBER the looks on their faces! Some such invitations are simpler to refuse than others. So I accept. And then on the day or night of, I phone and make a credible excuse–it can be anything. By then they have their hands full with preparations and won’t pressure me to come or ask for a reason.

If someone wants to shake my hand, I don’t have to say, “Sorry, I can’t shake your hand, I have Morgellons.” I can say anything else that will keep me from having to shake their hand. I can say that I have a cold, or that I need to wash my hands, or just that I don’t shake hands. I usually avoid the last one because people tend to think what I really mean is that I don’t want to shake THEIR hand.

No, I have come to realize that this disease is not their business.

It is OUR business.

 

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