- Posted September 17, 2013 by
This iReport is part of an assignment:
First Person: Your essays
Lyme Disease and Suicide, An Ignored Problem
Are you living with a chronic illness? Share your personal story here.
- dsashin, CNN iReport producer
Excerpt from my blog: http://whatislyme.com/lyme-and-suicide-a-problem-ignored/
Being active in the Lyme community, I am starting to wonder when Lyme Disease will get the media attention it is going to require to expose this terrible epidemic. I don't get it, it has all the edge you would think a news story would need. It has denial, corruption, conspiracy, and death. And sadly, many of the deaths are suicides. I have read time and time again that suicide is the #1 cause of death for those that suffer from Lyme Disease. Yet, I can't find any statistics. Why are there no statistics on this? Why is noone studying this?
People who are not aware of Lyme Disease, particularly, "chronic Lyme Disease," might wonder why so many would commit suicide. I mean isn't it a simple, easy to diagnose and easy to treat disease? Well that is very far from the truth, even though your typical mainstream doc might suggest this. You see, Lyme tests are very inaccurate. When you go to your doctor with symptoms, which might possibly even include a bull's eye rash, drs rarely recognize Lyme Disease. They are just not educated on it. Symptoms of Lyme include headache, fever, achy joints, neurological symptoms and many more. All of these can be confused for other conditions. When not treated right away Lyme disseminates throughout your body becoming second stage Lyme and eventually third stage.
Here are some of the reasons I believe people with Lyme Disease commit suicide.
1. HOPELESSNESS BY LACK OF EDUCATED DOCTORS
During the search for answers on what is making you sick, tests are not showing any real answers. You're symptoms keep getting worse, and you're wallet is getting emptier. You are trying to hold down your job and maintain your family or lifestyle. In the meanwhile you are getting sicker and sicker. Drs are not believing you and filling your charts with labels like hypochondria, fibromyalgia, chronic fatigue disorder, and many other conditions without looking into the true cause of what is causing your symptoms.
Many doctors also don't know that there are several tick borne infections, not just Lyme Disease.
As the patient gets sicker, but the inaccurate testing is not showing up any cause for the symptoms, the drs and patients alike start to get frustrated. Patients spend all their money on treatments and different drs without getting any real concrete answers. This leaves the patient just drained and feeling hopeless. You grow up thinking when you are sick you can turn to doctors. With Lyme, this is not the case. Sometimes they become your worse enemy.
Being that doctors have a hard time accepting Chronic Lyme Disease as a real disease, this trickles down to the families and friends of Lyme patients. Patients are constantly questioned by their own loved ones as to why they are not better with treatments, why their symptoms come and go, why no tests show Lyme Disease. Lyme patients start to lose everyone around them and feel isolated.
There is also the aspect from the families and friends view: "I don't know what to do, or how to help?" Friends and families stop calling because they simply don't know what to do. They don't know how to help someone who's doctor doesn't know what to do. It's hard for people to feel helpless. It's easier to avoid the situation then to sit there not knowing what to say to the sick person.
3. DEBILITATING SYMPTOMS
Each person is different in how Lyme presents itself in symptoms. There are a multitude of symptoms since Lyme can affect any organ, multiples organs, and changes throughout the course of the illness. Lyme can cause headaches, fevers, joint pain, nerve pain, anxiety, depression, shakiness, unstability, dizziness, vision distrubances, auditory disturbances, hallucinations, seizures, paralysis and death.
The ever changing symptoms keep us at home. Many Lyme patients find themselves becoming "agoraphobic" that is, afraid to leave home. Even if you have a moment or two where you feel ok, you don't know what symptoms will strike next and when. You can be feeling halfway ok and think you will be able to run and grab a gallon of milk, then as soon as you get to the store youre legs get weak, your heart starts to pound, you break out into a sweat and feel faint. So leave the cart in the isle, you run back to your car (or crawl if you have to) and drive home. It's embarrassing. This routine of evolving symptoms that comes out of the blue keeps us isolated. It's much easier to experience symptoms at home and be able to just lay down if you need to, then to be out at a family reunion and have an "embarrassing attack" in front of everyone.
I am barely even touching on the severity of Lyme symptoms. Several Lyme patients deal with severe daily pain, paralysis, not being able to eat, seizures and just plain strange symptoms such as internal tremors, unexplained jerking, memory loss or what some patients describe as "brain fog." One patient explains her worst daily symptom like this, "I wake up feeling like every inch of energy has been drained from me, I feel like my mind is alive in a body that is slowly dying." Another explains, " I barely have the energy to take care of my daily needs, if I shower it's a miracle, little less brush my teeth or hair."
4. FEELING LIKE A BURDEN
With Lyme Disease you end up feeling so sick and weak and dizzy that sometimes you can not perform the daily tasks you need to. Showering becomes overwhelming, getting dressed, brushing your teeth, standing for any length of time becomes hard with the dizziness and pain we experience. Cooking dinner or cleaning house almost impossible. We stop being able to do these things not only for our family but for ourselves. We don't want to ask for help. This leads to feeling like a burden. Not being able to attend events. Having to constantly cancel with friends or family members puts a strain on all relationships including making you feel like a burden to your own family. Not being able to be a mom or dad and play with your kids is especially hard. The ones you were taking care of now need to stop everyting to take care of you. The guilt it relentless.
5. LYME CAUSES DEPRESSION
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. Here are the many reasons for that:
Patients struggle with a multitude of issues, from not being believed, to terrible symptoms, to losing all their loved ones. Just trying "to be" on a normal day is a struggle for Lyme patients. This going on day after day for several years without much support, leads to depression.
Lyme Disease affects multiple organs including one's brain, (encephalitis, meningitis) endoctrine system, (thyroid dysfuntion) leading to depression and other psychiatric conditions. Dr Bransfield states that, "In my database, suicidal tendencies occur in approximately 1/3 of Lyme encephalopathy patients. Homicidal tendencies are less common, and occurred in about 15% of these patients."
6. WATCHING OUR FRIENDS DIE
As we are all struggling to survive this disease, Lyme patients have formed a tight community. We all get online and talk to each other every single day. It is the only support or human contact many people get. When you turn on the computer and see you have lost another friend to Lyme Disease, usually at their own hands because they just coulnd't take it anymore, you're heart sinks. You want to scream, you want people to notice, you want this disease to be over.
SIDE NOTE: I collected many quotes from my Lyme friends to add to this story, but since CNN only allows 8,000 characters I did not have enough room to add them. So I am asking all my friends to place quotes in the comments section below. Please read CNN. This is a serious matter.