“We are not lazy, crazy or taking advantage. We research, and bombard you with information because we want you to understand. We want your support. We stand up for ourselves, and promote awareness because if we don’t, who will?”
This letter was shared with the members of the 1,000 Letters Lyme Campaign, and is posted here with the permission of the author, Jackie Schling.
See also Kristine’s Letter, Heather’s Letter, My Letter, the 1,000 Letters tab under ‘On-going Campaigns’ or find the group on facebook (The 1,000 Letters Lyme Campaign) to request membership (you can participate without being on facebook). More stories will be published over time, but these are just a few examples of the hundreds of letters being written by patients to educate doctors, politicians, and the media, and to raise awareness via additional venues in the future.
To, My family, friends, and acquaintances:
I have Chronic Lyme disease. You may have heard me talk about it ad nauseum. I do this only to create awareness, and to explain to you why I cannot do the same things I used to. This disease has affected me in ways I never imagined, and no one but those who have, and/or are enduring it can understand.
You may want to tell me that you once found a tick on you, got sick, took antibiotics, and are fine now. Some of us are not so lucky. Many of us never saw a tick. Never had a rash. We at some point were infected, and went about our lives as usual for years, until one day we felt ill, or had surgery, or had an accident, or were overly stressed, and here comes Lyme. It can take years for it to rear its ugly head.
This disease is complex. It can come alone, or bring friends. We call these co-infections. All of these things are difficult to diagnose. We may have to see a long list of Medical Profesionals before we have been propely diagnosed, and begin treatment. In the meantime, we may have been diagnosed with Chronic Fatigue, Depression, MS, ALS, or a long list of other things. This process is not only frustrating, but demeaning, and expensive as well. It can take a lot out of an already ill person, and add stressors which can make symptoms worse. Add to this, improper, insufficient, or no treatment at all, and we have a dire situation.
Many of us have had to decrease our hours at work, or are unable to work at all. Many of us do not have a support system of family and friends who understand, and are willing to help. We struggle to maintain a sense of normality, maintain our homes, and lifestyles. Many of our relationships are strained, or broken, and friends no longer call. We endure all of this at the same time that we are living with the symptoms of our disease.
Each person with Lyme can have different symptoms, including overwhelming fatigue, muscle and joint pain, migraines, tinnitus, confusion, memory loss, tremors, sweats, rashes, air hunger, sensory overload, and more. The bacteria can burrow into all parts of the body. It can hide itself from detection, and treatment. To make matters worse, treatment can make the symptoms increase in severity.
We may not “look” sick, but we are. You might see us at the grocery store, or out with friends, but what you don’t realize is that on that particular day, we were having a “good” day. We try to enjoy these days and do as much as we can to feel “normal”, but trust me we will pay the price the next. Our little trip to the store, or attending a social gathering can send us into a bedridden state for days.
We are not lazy, crazy or taking advantage. We research, and bombard you with information because we want you to understand. We want your support. We stand up for ourselves, and promote awareness because if we don’t, who will?
There are hundreds of thousands of us who are infected. There will be hundreds of thousands more. This disease is not going away. It can be transmitted to your unborn child, your partner, and though blood transfusions. It does exist. It is and epidemic. You could be next.
If you have a loved one, friend, or acquaintance with Lyme, please be supportive, and help in any way you can. We cannot do this alone.