Lyme Files: Loneliest

This is not an illness that people can understand unless they have it or have watched someone go through it.

People would say, "Oh, this one time__" in an attempt to let you know they KNOW. My friend once said she understood my fatigue because she was pregnant and also tired.

Another friend spent about an hour explaining how her dermatologist had found a mole that was pre-cancer and she was able to have it removed. She told me how scary it was to be told to have cancer and how she was so lucky to find the top specialist who could treat her and follow up with her. She said she understood what a "medical scare" was. She also was very careful to use sunscreen.

I just remember wanting to connect with her story. To find the common thread of illness. We had none. I asked if she wore bug spray at all, she said it was toxic and she didn't like the smell of it. I told her to be careful since I was struggling with tick-borne illnesses like Lyme.

"Well, at least it's not cancer," she told me.

It is the loneliest illness - or as lonely as invisible illnesses truly are - because no one knows what you are going through. No one is going to understand you, help you or believe you - even if they think they want to.

There's no company selling lime green items to support some Lyme Disease fund. There is no giant 5K or bike ride or bake sale to let you know how bad this stuff is. There is no "face" of Lyme Disease or any tick-borne illness.

You Don't Look Sick
As people, we have an image of how "sick" looks. Sick is thin and bald. Sick is mental illness portrayed on Criminal Minds and other police procedural dramas. Sick needs a wheelchair or medical stuff hanging out of you. Sick is a very specific age or at least a rotting smell.

If not, you are not sick. You are lazy. You are faking it. You want attention. You are toxic. You are dramatic.

If you couple that with the fact I had something that the medical community saw as something I couldn't have - it was a time I was really on my own. Well, me and my Mom. She's a minxy lady who, somehow, kept me on track.

There was no support group for Lyme when I had it. There were groups of people trading survival techniques and secretly trading doctor information. And people who were sick and disconnected and angry. And people who couldn't remember what they were talking about in the middle of talking.

Watching someone come back from a blackout didn't make them easier to live through. You just grasp at each other in this fog of sickness and defeat and rattle off the words you can remember. I remember seeing new faces looking around with this wide-eyed look at the range of illness in Dr. Burke's waiting room. Too often, there were faces I never saw again. Not because they were better but because they died. Maybe the support group was something of a HIPPA violation - when you ask where someone is.

It was (and IS) a world of survival and anger and the people who needed support the most were too sick to seek it. Too sick and already told they would get better when they decided to get better. These people are silenced by meaningless and untreatable things like Chronic Fatigue Syndrome (CFS) and fibromyalgia. 

At My Sickest-isk
Here is a photo of me - April 16, 2006. This is what I looked like literally a little over a year before I was about to die.

I look like a cute, attractive girl. This is how the medical community and how people who met me saw me.

Well. . not everyone saw me that way. Let's give a moment to tone back the vanity. I was, you know, a normal looking 26 year old. I don't look like someone who is "sick." At this point, the amount of pain and memory loss and everything had stopped me from seeking help. I was living at home and just trying to get by.

I'm even doing my favorite thing ever - being on the Internet.

Here I am in June of 2007 - still hardly looking sick. I actually look a little overweight maybe.

So. . if someone doesn't look sick, doesn't act sick, doesn't do sick good enough - can they really be sick?

If you have Lyme and other tick-borne illnesses - it doesn't even matter. You need to keep all these things quiet. If you lose your doctor, if you lose the people who do believe you are sick by talking - you have nothing.