Saturday, April 14, 2012

Lyme for Life?

Today I got a message from another Lyme patient. This woman is frustrated beyond belief and doesn't feel like she can deal with Lyme or life in general anymore.

I can relate to this sense of despair all too well. Many times I have felt the same way. Suicide is not something that I would EVER consider. I know it's not the answer, and it only causes more pain to family and friends. However, I can easily understand how the endless days of pain and fatigue, the financial stress, and the constant anxiety and worry can get to a person.

Every day I read articles about some of the serious consequences of chronic Lyme. For instance, I recently read that many women with chronic Lyme have a very hard time conceiving children and some have children born with congenital Lyme. These children often end up with serious complications.

The other day I read an article about Lyme contributing to the development of lymphoma. Additionally, I have read countless articles which describe how Lyme has never been proven to be eradicated from the human body. In other words, even if I am able to suppress this disease, it will always be in my body waiting for an opportunity to repopulate and strike again.

I, like many Lyme patients, am trying to wrap my mind around the fact that I may never fully recover from this. I have to start realizing that Lyme might be something that I have to learn to live with, not something that I can treat and get over like an ear infection. This disease is likely something that I will have to keep in check for the rest of my life.

I was just getting started with my adult life when this disease hit me. I'm about to complete my grad school degree. After years of studying and spending all of my time trying to attain the highest possible grades, I was looking forward to relaxing, starting a new career, becoming more social, and finding someone to spend the rest of my life with. Are all of my plans down the drain now? Who wants to get involved with someone who has a chronic illness? Even worse, how many people my age will even take Lyme seriously? How long should I wait before telling a new acquaintance/boyfriend about Lyme? Should I be upfront or wait a certain amount of time?

I don't know why some people are affected so severely by Lyme and others only have minor symptoms that are easily treated. For now, I have to make the best of it. I am grateful that Lyme is something that doesn't rapidly spread and kill people quickly. At least for now, it's able to be suppressed either by antibiotics, herbs or other alternative methods.

For me, I think it's best if I use my Lyme diagnosis for some type of purpose. I feel like if I don't rationalize it as happening for a reason, then I will see it as a punishment for something I've done. So I'm going to do my best to advocate for Lyme in my area. I'm going to start to attend local support groups, hold informational meetings and Under our Skin screenings, and volunteer for local Lyme events. I'm hoping that the more I speak out about this, the more awareness will be raised in my area. Lyme is a serious issue. I NEVER would have expected this to happen to me. Now that it has, I want to make sure that other people know how bad it can get so that they don't allow themselves to progress to this stage.

More important is physician education and awareness. Even with a cut and dry case, I couldn't get adequate treatment. I progressed to a severe stage partly because doctors would not listen to me and refused to test me for Lyme. Perhaps if enough patients assert themselves and discuss their stories, physicians will be forced to change the way they diagnose and treat Lyme.