As a society, we form opinions based on what we see, hear and experience. Sometimes it’s firsthand, other times, it’s based on what is shared with us. Many times, its hard to form an opinion based on the conflicting information we receive, especially the sources.

Take Lyme disease for example. The Centers for Disease Control reported that Lyme disease was “the fastest growing infectious disease in the U.S.,” with new cases each year surpassing HIV and breast cancer, and the response was … nothing. Nothing changed with medical providers in the way they diagnosed and treated. I witnessed the reaction from Mainers when a nurse exposed to Ebola left her house. Outrage and calls for legal action when in hindsight, none of us were ever at risk. But we didn’t know that. We only knew what information was being put out about exposure to Ebola and the death toll it had taken to that point in other U.S. states.

Now, why are we not outraged about Lyme disease and in the rise of other tick-borne diseases that inhabit our state? I will tell you my opinion and I welcome yours. It’s because of what we are being told by people that we trust and how our medical providers are approaching it. Even with new science revealing new tick species and new tick-borne diseases, the idea of being exposed to a tick-borne disease does not outrage many. If it did, more would be using repellent and other prevention methods to avoid tick encounters at all cost. We should fear the diseases that mosquitoes carry as well but somehow, we’ve become desensitized. Many that I talk to who have friends and family who are suffering from a tick-borne disease do take it more seriously because they have a front row seat to the devastating effects this disease can have.

I also think it’s who you know that has it. Many who have been exposed to a tick-borne disease, who got it diagnosed and treated early before the debilitating cognitive and physical symptoms could set in have one opinion. But sit with the family of someone who is extremely disabled by their symptoms and you will have a different perspective. Your relationship to a patient suffering from a chronic disease also impacts your opinion about the disease. I know of people suffering from other diseases whom receive help from the community while others do not. Why is that? Is it because you don’t know them personally? If that were the case, we should be throwing benefit dinners every night because someone somewhere within our community is suffering greatly from something that we just don’t understand.

Too many people are suffering in silence who deserve compassion, understanding, support and encouragement giving the fortitude in which they are handling their adversity.

People are afflicted with tick-borne disease in varying degrees. Some can work, some cannot. Some have had to reduce their hours. Others have had to make special accommodations in their lives and homes. Some can share their struggle and express their feelings, others have a very difficult time putting their thoughts together to make sense. Some have problems with their legs and walking, having to use a cane or wheelchair from time to time. Some have trouble processing and keeping up conversations. Some you will see in town from time to time, others isolate, finding solace in their homes. This is Lyme Disease is all stages from acute to chronic. Acute stages, caught and treated early, have minimal interference in your daily routine. Some side effects from the medicines, perhaps a few sick days. But when it is not caught early, when it is not treated appropriately, when co-infections of other tick-borne diseases are not identified and treated, when the disease is allowed to disseminate throughout your body, into your organs and tissue, the resulting symptoms and degrees of severity can vary as well. I suffered terribly with a neurological infection, complicated by four other tick-borne diseases, that impaired me to the point people thought I had had a stroke. When I did get out, I didn’t recognize people that I had known all my life. I had to stop driving when I got lost driving in the very town I grew up in. I struggled to get my thoughts put together only to have my words come out garbled at times and mis used. My saving grace was that I was not always aware of this but those around me were. They had a front row seat to the devastating effects this disease had on their daughter, sister and wife.

As I share my personal story with others, I am reminded of those who did not survive their illness. Taken too soon, succumbing to a disease that does not get the respect it so deserves. If it did, all medical providers would be up to speed on the latest diagnostic tools and treatment options, especially those in endemic regions like Maine. The number of new cases of tick-borne disease would lower instead of rising every month and a stronger approach would be taken by the state. The state of Maine has risen to the number one spot in the top endemic 15 states and yet we hear nothing. We spent more time talking about Ebola and Zika and how it affected other states and have given zero attention to the endemic in our own back yard and how we’re going to combat it.

We can’t go around calling something “the fastest growing infectious disease in the U.S.” and sit back and do nothing while new cases continue to be reporting every month. We need to be on the same page and in agreement that something needs to be done ~ and done now ~ before another life is lost and another family devastated by tick-borne disease.