I Am Conflicted...

My heart is breaking for all the Lymies around the world. We so desperately want to have a normal life again but this horrible disease keeps getting in the way. When I say we, I mean the diagnosed Lyme patients, their families, caregivers, children, parents, siblings and friends who desperately want to see them healthy again. Lyme doesn't just affect the patient...it affects everyone around them.

The sad truth is that Lyme Disease can affect a marriage. Marriage is hard enough with two healthy people, let alone one and sometimes 2 sick people. Communication breaks down when the sick spouse loses the ability to articulate their feelings, frustrations and limitations. When one spouse is diagnosed the first reaction is often, "Great! At least it's not MS, FB, CF or Fill In The Blank with your own Misdiagnosis". Once the reality of the disease kicks in it can become impossible to overcome.
Suddenly becoming a caregiver can be overwhelming but imagine how hard it is for the sick spouse when the healthy spouse says- "I don't want to be married to someone with a Chronic illness"...It would be devastating to hear that from the one person who is supposed to be your ally, your advocate and your best friend....

Unfortunately, this scenario happens all the time in Lyme families. I read an update from Jordan Fisher Smith on the Under Our Skin blog. He was featured in the Under Our Skin Movie and at the time of the filming he still had his family. This is what he wrote yesterday.

Prophetically, when the Open Eye Pictures crew first visited my home in 2005, my wife didn’t want to be filmed, and you don’t see her in the movie. My illness was hard for my wife. She had never taken care of a person who was sick and we both found out she wasn’t cut out for it. Lyme patients with brain problems—people who can’t sleep, people who are suffering terrible pain and discomfort, irritable people who are having trouble finding the words to express themselves—are hard to take care of, even for someone who has experience in caregiving. But the problems go farther than the individual caregiver.

If someone in your neighborhood gets cancer, people show up with casseroles. Neighbors organize to support the affected family. Family members come from all over to visit and sit by the bedside of the affected person. But when someone gets Lyme, often none of this happens, and the Lyme family is terribly alone. My wife didn’t have that support, not from neighbors or friends or even our own families. Her life had not given her an opportunity to learn how to behave in an emergency, or when something difficult happened. She wasn’t going to the doctor with me, didn’t know the names or dosages of the drugs I was on. She liked being out of the house when possible. She seemed distant and out of touch. But given the terrible ignorance about Lyme around her, it’s hard to blame her for what happened...Now we’re going through a divorce.

I hear about this often from Lyme families. The tragedy is larger than the thousands of Lyme victims themselves. Lyme is also destroying families, and the really sad thing is, a serious illness is when people need their families the most.

I am conflicted because I don't know what to do for all of our Lyme friends. We now have Lyme friends in CO, WY, NM, AZ, IA, MO, KS, MA, AL, TN, FL and NE. All I can give you right now are my continued prayers and my promise to continue to educate so we can eradicate this disease. I know that Scott and I are going to be one of the families that makes it thru this illness intact. I am committed to unconditional love no matter what this disease brings. I pray that your family will remain intact also.