The deep, dark Lyme place (possible trigger warning)

* disclaimer: I am not suicidal, in any way shape or form. Please do not take this the wrong way and freak out.

There has been a story circulating the past few days on the internet about a girl named Heather with chronic Lyme disease who committed suicide because she was so sick she couldn’t go on and had no one to help her.

This is what she posted to Facebook as a last desperate plea for help.

And here is a link to the YouTube video she posted a few months ago begging for help:

http://youtu.be/47aap_9DTT0

Let me just state the obvious and say, this is terrible.

But I get it.

This is a horribly isolating disease. You are very very sick, but doctors tell you you’re crazy and that there’s nothing wrong with you. If you have family they think you’re faking or they’re just sick of dealing with your problems; if you have any friends left who haven’t disappeared since you’ve been sick they probably have no concept of what you are going through and have no idea how to relate to you. If you’re lucky enough to still be able to work it takes every ounce of strength you have, leaving none left for anything else; and if you have any energy to do fun things you probably have no money to pay for them since you’re paying hundreds of dollars a month on treatment to try to get better (assuming you can afford to pay for treatment at all).

On top of Lyme being so isolating, it messes with your head. It makes you depressed, moody, angry, anxious, and a whole list of other emotions…usually all at the same time. I call this the deep, dark, Lyme place…I’ve been spending a fair amount of time there lately.

A lot of people on the internet are saying that this girl wouldn’t have felt the need to take her life if Lyme was a recognized disease, with insurance companies covering treatment costs. While this may have helped the situation, I feel like there is so much more to it than that. This disease fucks people up, and that’s the sad truth. 

This girl isn’t the first Lyme sufferer to decide to end it all, and she won’t be the last.

I get it.

My pain has been absolutely excruciating lately. I have no words to describe it. It is brain numbing, soul darkening, make you want to curl up in a ball and just die, pain. My pain medications aren’t strong enough, so they just make me feel sick and sleepy, and still in pain. It hurts to move, it hurts to breathe, it hurts just to think.

I don’t know how I can keep doing this. I can’t keep waking up, putting on my mask, and pretending everything is ok. Because it’s not, I’m not ok.

Now, I am one of the lucky ones…I have a wonderful family who believes that I am sick and pays for my treatment, I have a few really awesome friends who are there for me when I need them, and I have a place to live and a job. That is more than a lot of Lyme sufferers can say, and I am very thankful.

However, no one understands this pain. Apparently this is not one of the most common Lyme symptoms (joint pain is popular, but not this deep “every cell in my body is screaming in agony” type of pain), so even my wonderful friends who are also battling Lyme do not know how to relate to me because they have never felt this.

I am in a couple of online support groups, and have met wonderful friends that way, so I started to post on one telling them how badly I’m hurting and asking for pain relief suggestions…and then I realized that unless you have felt this pain you won’t really have any helpful suggestions, and besides I’ve tried everything anyway. Epsom salt baths, massage, acupuncture, physical therapy, reiki, heating pads, TENS units, creams, stretching, yoga, meditation, tea, coffee enemas, deep breathing, muscle relaxers, anti inflammatories, pain killers (of varying strengths)…you name it I’ve probably tried it, and nothing gives much relief. If it helps at all, it’s only to dull the pain and it is always short lived.

So I get what lead Heather to her point of desperation; and while I am one of the lucky ones now, if that were to end for whatever reason, I could quickly end up right where Heather was…and maybe become just another casualty at the hands of the deep, dark, Lyme place. 

Don’t ever judge someone who has made this choice; I’ve heard people speak badly of suicide victims claiming they could have reached out or they must have had someone somewhere who could help, and “that’s what suicide hotlines are for”…please, don’t be those people. Never take for granted the fact that all of us are really just a a bad circumstance or two away from being in their shoes, especially those of us battling Lyme.