September is National Suicide Prevention Awareness Month. Seeing signs for this everywhere provoked me to do a little research on the correlation between Lyme and suicide.
Although there are very few cut and dry statistics, I was not surprised to learn that suicide is the #1 cause of death with Lyme patients - especially those with chronic/late-stage Lyme. My search results showed blog after blog of friends and family members who have lost someone to the disease by way of suicide. And as staggering as these results are, you have to wonder how many more people out there who have opted out of life and actually have Lyme were mis-diagnosed, or not diagnosed with anything at all!
I know that some people think suicide is a selfish cop-out. Especially when it comes to a disease that so few people really understand. It's very easy to be judgemental without walking in someone else's shoes, and wonder how life could be so bad that they would choose to end it. I'll even admit that I've thought this way about suicide many times.
But over the course of the years, I've come to understand a little more, why people who commit suicide could reach such a low point in their lives. Because I've pretty much been there. I mean, I know I would never actually follow through with it. But I can't say I've never had thoughts creep in my mind like, "what would happen if..." My husband can attest to the many times at home where I've been in such a depressive funk that I've cried for hours, telling him that "I don't see the point of a life like this", or that "I don't want to deal with it anymore."
I'm not saying that I condone these thoughts or agree that suicide is the right thing to do. But I do want people to know just how low a person with Lyme disease can feel, and what some of the reasons may be behind someone feeling like there is only one way out. Here are a few:
1. DOCTORS MAKE US FEEL LIKE WE'RE CRAZY
During the search for answers on what is making us sick, tests continue to come back normal. Our symptoms keep getting worse, and our bank accounts become more and more depleted.
It took me 6 years of doctor after doctor, test after test, before I was diagnosed with Lyme. Something in me kept fighting, even though I often felt like giving up. It got to the point that before I even went in for a new test, I knew that it would come back normal. I felt like my life would forever be a pattern of hopelessness and negative tests.
It's no secret how many doctors out there are misinformed and uneducated about Lyme. When I was diagnosed with things like IBS and chronic fatigue, I could tell that what it really meant was that my doctor was giving up on me and diagnosing me with something just to have an "answer". So many of them made me feel like I was fine, that there was nothing wrong with me, and that I was a crazy hypochondriac for believing there was.
My gastroenteroligist in Spokane, after months of testing and appointments to figure out my horrible stomach problems, concluded that I just needed to eat slower and not chew gum. Are you kidding me??! Another doctor in Spokane, when I told him that I had gone up 4 pants sizes in one month with no change to my diet or exercise program (which was VERY strict at the time), lectured me on eating less food - more apples, less cheeseburgers. I was very clear that I didn't eat junk food, and always ate healthy, yet in his mind, he thought I must be lying. I was so offended, hurt, and beyond all, frustrated! Needless to say, I never went back. It's pretty sad to say that I had come to trust WebMD and Google, more than the actual "medical professionals".
2. DEBILITATING SYMPTOMS
When people ask what my symptoms are, I become very frustrated. Not with the person asking, but with the fact that no matter how long of a conversation we have, or how detailed my explanation is, I can never fully put into words just how horrible the symptoms really are. For instance, people who endure back problems think they can relate when I talk about my pain. Don't get me wrong, all back problems are horrid - I've been dealing with stuff like that since high school. But this kind of pain is just different and so much worse, and you can only truly understand what I mean if you have Lyme yourself. Also, it's not just the pain. I could talk for hours about my symptoms, but even then, I can never paint a perfect picture of what it really feels like.
I have a lot of days where I feel like I can barely move or get out of bed, and it takes even more strength than normal to get through my day. Unfortunately, there are people who don't have that strength. And I'm sure anyone can see how depressing a life like that would be. It's more than just the physicality of this disease we must deal with too - I believe Lyme patients are psychologically overwhelmed by the large multitude of symptoms we must endure on a day to day basis.
3. ISOLATION
Illness is an uncomfortable subject for a lot of people. It's an unfortunate thing, because it's when people are at their sickest that they need support from family and friends the most, yet it's at this point when those that are ill lose so many around them. I remember hearing that from cancer patients, that you realize suddenly who your true friends are, because so many easily fall off the face of the earth, too uncomfortable to deal.
With Lyme, because the truth has been kept such a secret by our government and insurance companies, people know only what they hear trickling down from the CDC, that Lyme can easily be treated by antibiotics and that it's not a big deal. It's no wonder that some people think you're faking symptoms or that your disease is no big thing.
For those family and friends that do at least understand how horrible the disease is, they still often don't know what to do or how to help. Or, they don't want the depressing negativity of this disease to drag themselves down. So they stop calling, simply because they don't know what to do or say, how to help, or because they just don't want to hear about it. And I don't blame them really. No one wants to be part of a conversation to a topic they don't completely understand. That's why I bow out of most political discussions. ;)
I think I may write a separate blog about this another time, but it's devastating to learn how many marriages end up in divorce because one or both of the spouses have Lyme. This disease wreaks havoc on every single aspect of your life! I can't imagine getting through each day without my spouse, but a lot of people dealing with Lyme are completely and utterly alone.
And then there is the fact that a lot of people with this disease are flat-out unable to do the things that normal people can. I know for myself, I rarely commit to anything socially anymore because I know how hard it will be. Isolation is almost inevitable when you're stuck at home on the couch day after day.
4. FINANCIAL BURDEN
I don't know many Lyme patients who haven't had this problem. It mostly comes down to the fact that it often takes YEARS for a proper diagnosis. I've honestly lost count of how much I have spent out of pocket at this point. I've been sent to collections a number of times because I couldn't keep up on all my bills. And even now that I know what ails me, the bills keep on coming - doctor appointments, treatments, cupboards full of pills. I'm on a first name basis with everyone at the pharmacy, if that tells you anything. It's like my personal Cheers!
Luckily it's gotten a little better for me now that I'm married and we have a second income. Although it's frustrating that all of our hard earned money is being spent on this stupid disease. I also feel guilty, even though I know my husband just wants to see me better, that he married into such a desolate financial situation. We have been extremely blessed by our family and friends who have helped us financially throughout the years - and especially with my most recent fundraiser (thank you everyone, so much!!)
Unfortunately, not everyone who suffers with Lyme is as lucky as I am, to get by like this. Many people are forced to quit their jobs (something I've contemplated myself many times). I can easily see why such bleak financial situations, on top of dealing with the illness, could lead someone to want to give up in such a bad way.
5. NEUROLOGICAL SYMPTOMS
Many people don't know that these organisms can enter every single part of your body, every organ, including your brain. As you may imagine, this can lead to major destruction. Memory problems or dementia, extreme moodiness, hallucinations, panic attacks, paranoia, seizures, depression and more.
I experience a handful of these things all the time. When it happens I feel like a different person, like I've lost complete control over my body. The only way I can describe it to those of you who don't have Lyme, is to women who deal with PMS, pregnancy, and other hormone issues. And well, I guess the men who have to deal with the wrath of these women kind of know what I'm talking about too!
Think about all the emotional symptoms that overtake you - the extreme rage that comes over you for no apparent or logical reason, the never-ending well of tears when you see a commercial on TV that wasn't meant at all to be sappy, the deep depression, or the confusion that overwhelms your brain when you're usually a clear-minded person. Now think of those symptoms, multiply them by about 20, and imagine having them way more regularly than once a month. It's pure hell.
Robert C. Bransfield, MD is a psychiatrist who works with Lyme patients. In his article, "Lyme, Depression, and Suicide," he says that the #1 psychiatric symptom of Lyme Disease is depression. He stated, "in my database, suicidal tendencies occur in approximately 1/3 of Lyme encephalopathy patients."
With this blog, I want to let those of you who don't understand this disease to realize how easy it is to get to such a crippling low. But more than that, I hope that those of you that are struggling with this disease and these feelings realize that YOU ARE NOT ALONE!
Some towns have support groups that meet, so make sure to look up your area and see if there is anything like that where you live. I don't have that here in Olympia, but am thinking about starting one. Otherwise, there are a lot of Facebook support groups out there - you'd be surprised at how many people are dealing with a lot of the same things you are.
Slowly but surely, this country and the world are starting to recognize what an epidemic Lyme Disease really is, and I truly believe there is hope for better care one day.
Below are some informative links - make sure to check them out!
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Ask a Lyme Question https://www.facebook.com/groups/121919717946352/
Information for New Lyme Patients http://whatislyme.com/where-to-start-lyme-info-for-newbies/
Financial Help for Lyme Patients
Financial Assistance Here is a group of links to organizations that may help pay for Lyme testing, antbiobitics and other situational needs. http://whatislyme.com/assistance/
Fundraising Tips Here is a collection of ways you can raise money online to help support yourself or treatment. I recently used "Give Forward" to raise money for my treatment and had an excellent experience with it, other than the fact that your fundraiser expires after two months. http://whatislyme.com/fundraising-tips/
Need Somebody to Talk To?
Here is a list of groups you can reach out to and article you can read, and a suicide hotline list.
Hotline Numbers and Facebook Groups for immediate help http://whatislyme.com/suicide-hotline-list/
Suicide Prevention An article written by a Lyme patient with their own experiences regarding the thoughts of suicide. http://whatislyme.com/suicide-prevention/
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