When I see yet another dear and precious soul who choses to leave, I don’t feel judgement toward them or their decision, I understand completely as the pain is so unbearable at times, and when the toll of lost relationships and unfulfilled life purposes add up, the night is dark. It deepens my dedication to help work toward the answers. The emotional healing, the physical healing, and I believe this is all pointing to the need of healing of our world.
Please describe what it feels like when you turn on your computer to see we lost another lyme friend to suicide… 
First of all, what is it like to lose a friend in general? Or a husband? Or a father? That’s exactly what my son and I lost. It angers me, made me have a breakdown, and cried for 3 years straight it seemed. Now, when a friend with Lyme dies all those feelings exist except depression for me. I become angered and more determined not only to beat this, but to make a difference so this doesn’t have to continue.
I do not have a single soul left to love or who loves me, so I could only imagine how empty I would feel and that I had failed another person and did not save them from suicide. Yet, I have been battered to pieces by this myself for over 30 years. The first tick bite came from a hike in the late 1970’s Connecticut and I did get very ill for about four days then got better. About ten years later I had to have a synovectomy on my ankle near where the tick had bitten. Another probable reasult from Lyme was all the odd health problems I managed to endure, iespecially what was finally diagnosed as Endometriotis. I think I survived because I ate a healthy vegan diet and used herbal medicines. Then I was bitten in 2008 while gardening in my yard adjoining a 1,400 acre park. I got extremely ill from that bite, and my GP screamed at me for even suggesting I may have had Lyme and refused to test or simply give me Zithromax. I was deathly ill for ten days, then returned to work. After that, my life fell apart. As time went on, I was no longer able to work, then read, knit, embroider, bead, or paint. Then my very close friends abandoned me, in stages. I became a prisoner in my home.mThe end was when they would not even speak to me on the phone, but were cheap enough to make really lame excuses why. My family did the same. Only they were more brutual about forgetting I existed, for they did not want to have to help take in, or God forbid help pay for my care. I lost everything, and it hurts so much I cry almost every night. No, I am not depressed. I am having normal emtional reactions to deep pain and loss. I am Quaker and do not believe we should kill another, nor take our life. It is very hard for me, because when you are homeless because your brothers who have nice jobs and big homes with spare bedrooms refuse to help you, you want to die. Not to get even with them, for they are heartless, but to end the constant sadness of a once beautiful life lost. It is worse because people are very selfish and cruel these days, and only a few may say something nice, but they do not mean it. I am invisible. No one would even bury me.
Donna my thoughts and prayer are with you.. Im so sorry you are so all alone. My heart really goes out to you. Would you like me to share your story in ” A Patient’s View?” It may help you not feel so all alone and others reading it that may be in the same position might be helped by realizing they are not the only ones that feel this way too.
You don’t even have to know the person and with Lyme, we all become family, so it is like loosing a member of your own family and it scares the crap out of you. It makes me wonder just how long I will be able to go on too.
It is so sad when I hear someone else has died from this horrible disease. Whether by their own hand or the lack of care by our Medical Community it’s still suicide either way look at. The pain, anxiety and so many other symptoms that you get with Lyme and co-infections. CDC & IDSA don’t give damn what happens. Doesn’t warn people how to protect themselves. It is such a shame how we are treated, just makes sad.
I am so sad over this. Why can’t we be given the same respect..
As others with different diseases I mean……we are all sick.
I’ve struggled with suicidal thoughts, thanks to Lyme. Whenever I hear about another suicide in our community, I realize how much devastation it can cause & that helps me to get over the suicidal thoughts. It crushes me to see people who can’t afford the medical costs even though we supposedly live in the greatest country on earth.
yes yes
It is heart wrenching to say the least. I cry every time and it seems to be increasing. I cry not because I hve known the people, only a few, but because I hve known the feeling all too well. We struggle every single day with this debilitating disease and yet we have to fight to get treatment, diagnosis and recognition that we are actually sick and literally dying! We get tired of the fight so we give up. I think if I never had the support of a loving husband and my children that I too would succumb to this end. It is very sad that this is what we hve to resort to because of politics. It is not fair. We are dying and no body cares.
I wish the “real world” and main stream media understood what a horrific problem this is. We are often the ones who “don’t look sick” when you see us out. What you don’t see are the days, weeks, months, (years), that we spend home in pain, in bed, on the couch. Without the energy to shower, read, talk, watch television. How do you accept an invitation to go out if you can’t shower and dress? Sometimes we lie in bed wishing we would die so the pain and loneliness would end. I have lost a “close” Lyme friend to suicide. We’d never met, but we would end our notes with agape, a Greek world for the love of friendship. I will stay up half the night on-line with someone who seems suicidal, I have a few times. Luckily, no one else I know personally has killed themselves. And yes, I’ve thought about it. I’m now up to five cats – because as long as I’m responsible for them, I have something I have to live for.
hang in there, i understand, two years ago healthy beautiful, dating, now lost all no possibilities, no validation, feel your pain, i feel your pain and the hope it will change always broken, if only we would have opyr suffering recognized, like saying someone does not have an invisible knife in her back ,as she vainly tries to remove it and is told the knife does not exist or if she just pulled harder, out it would slide. we all lose so much emotional blood in this battle not just against the disease but against ignorance.
That is such a true analogy, you surely have a gift with words. But I am so sorry they have to be used on this terrible disease and the situations surrounding it! But your words are so true!
It breaks my heart each time I read about another soul that has given in to this horrible disease. We have lost so many over the years that I have been involved in the Lyme community, sometimes these people are strangers to me but all too often I know them and I am filled with great sadness again. Not that long ago I travelled to attend a memorial for the passing of a dear Lyme friend, we all were sorry to lose this person but at the same time we understood why and wondered if we too would lose the faith one day.
My heart is deeply saddened when I learn that a person suffering from Lyme Disease has ended their life by committing suicide, regardless of whether I know them personally or not. It does not easily leave my mind.
I am outraged and hurt time and time again by the IDSA’s refusal to recognize Chronic Lyme Disease, in the light of day, for what it truly is, and what it is doing to millions of people, leading them to life or death decisions that they probably would never make if only they could hear the words, “Chronic Lyme Disease causes tremendous suffering in patients…we know it exists…we are doing all that we can in the way of research with the hope that we will find a cure.”
Instead the IDSA holds to their decision to keep their knowledge hidden, only whispering what they know in secret, misleading doctors, insurance companies, and the public, so they will follow only what they publish to be truth, taking more and more down a dark road.
The saddest part and the reason I cry is that I can understand the pain that brings someone to the decision to end their life. Lyme is a terrible disease, a lonely disease, and a disease that causes pain that many times words will not explain, and the person must have been there at some point before their life was brought to an early end. May God help us all until this darkness is brought into the full light of day and may that day be soon.
It is only by His grace that I have been saved.
amen. angel rapheal, hear you
I feel like a mama losing babies, no matter their age…heartbroken. To get to know this community is to be humbled by the courage, heart, and determination of patients fighting for their lives, and others’. But it’s spirit-wearying to be treated so terribly by those charged with your care.
I made a Lyme ribbon purple heart pin, and some folks were upset that I did that. Well, tell me these are not soldiers in the battle of, and for, their lives! This is a long and bloody war, the atrocities committed daily, the enemy relentless with attacks, and the brass lost in endless arguments, as if soldiers lives meant nothing.
I weep.
Still, I want you to live…fight to live, for yourself, your community, for the next patient coming. You are believed, you are loved, you are not alone!
Determined, after the sorrow and anger, determined to keep fighting, determined to reach out, the truth our mantra.
I cannot blame anyone who so desperately seeks respite, but I can blame those who so easily discarded the truth for money, and abused their power with no humanity, no regard. Murder by disdain.
God bless Lorraine, couldn’t have put it better myself. Used to be a good writer, but too many symptoms now, or I would write an elegy for all the victims. Feel myself as though I am worth nothing, why did I life, why did I go to school, why have I ever tried, tried to beat the illness, only to be denied treatment, until it spread to brain, then bones in head and is not intractable and insurance won’t pay for anything…nursing home, hospice, abx, and even kicked out of crisis center because of PICC line and liability issues while surgeons have refused to do biopsies to find it because it’s a litigation situation, or could be….I feel like these are precious people who had great strength and hope in them at one time, but were driven to absolute despair and just to make something change besides sitting there, feeling themselves slip further and further physically and becoming less and less a part of the normal world, they chose to make this one last act of protest and dignity happen for them, and to provide them much needed peace from the pain and anxiety of the pain. Getting the illness and being misdiagnosed over and is like being hit and run, left to look up at stars paralyzed in confusion, wondering what happened, and when you call out and call out and finally the ambulance comes they run you over again, and then go with their lights flashing on to the next person to save. I have been to multiple ERs with severe weight loss, vomiting several times an hour and pain in my head bones so bad it made me lie on my face, have trouble seeing, thinking, imagining, reading, etc. but the doctor said you are clearly sick but you don’t meet the “codes” so I must send you home and then they say, now, “if you will excuse me, I have a life to save.” As though mine did not matter and I was not asking to be saved just then, the other patients come first of course, but to patiently wait for some help to be put in the hospital, when I finally was put in there, they kicked me out after three days and the hospitalist mocking me and my doctor and my family to the point of me breaking down in tears. I know who every suicide feels. I am likely be one myself in the next week. I know the shame and the gradual loss of self and the pain and helplessness that we can’t change anything, but we all start out with our heads high, hoping to be that last voice that might make a difference. It hurts so much to be called simply “emotionally disturbed” and manipulative and a liar and not to have your real grief and loss and physical pain recognized and sometimes that pain is worse than death because narcotics don’t control it. I know from the bottom of my heart what each of these people went through. I am there, too. I remember some names of suicides, Heather, Bryan and Theda, and Susan, most of them were my own age, but their strories made me sick, and that was when I thought someone must start a Lyme hospital a refuge, where people like this can come. It would be a charity hospital like Saint Judes and would have a blue flame of hope burning above it. This was my dream to create this, before getting so sick it spread to my brain/bones, but now my hope is someone else who has money like the British Lyme victim John Caudwell will do this instead. The part that hurts the most is that it seems it does not matter how many of us die, we are like mosquitoes hitting a light and falling with no names or notice to the medical world. Then, when you go, it has though they has seiged you out, time was on their side, they knew you would end it eventually and then the false diagnosis of depression would have validation, and of course under those circumstances there is not going to be an autopsy, since it appears to be suicide, and so through the invisible knife of Lyme which the patient dies trying to pull from his back, the myth that all Lyme victims are crazy somehow it perpetuated. Who could bear to live to the end of syphillis or cancer with no pain management? Or AIDS? Why should it be different from this and who is not surprised with the combined physical and mental complex that so many of us, even the strongest, go by suicide? It’s unspeakably sad. Vets treat animals to get them better because an animal has monetary value well and they get treated for Lyme ASAP, but all a human seems to be good for is to make money for doctors by staying sick and the insurance does not want to pay out for the treatments. A human is worth more to our economy dead than a cow or a sheep or a head of lifestock. It is enough to make you not want to live, even should your lyme go away, but, there are still the people on sites like this who care. God rest the people who have lost their lives to Lyme and suicide from Lyme. It makes me too sick to even explain.
Brooke, hi I am Lisa, the admin of this site and the one who keeps talking to you. I think your words could help others not feel so all alone. I have been collecting peoples story for the section called, “what Lyme feels like to me.” Would it be ok to take your words here.. and make a post out of them, called, “What Lyme feels like to Brooke.” I really think your comment above is so heartfelt and might help those who dont have Lyme to understand the pain we go through and it will help those who DO have Lyme to know its normal to feel this way. That they are not alone or crazy…. What do you think?
PLEASE DO. THE ONLY PURPOSE IN ALL THIS IS TO CHANGE IT FOR THE FUTURE. ive even reached out to Lyme organizations with calls for help and ideas for how to change things and they don’t even drop a note back, so god bless you for noticing and PLEASE use as many comments and ideas from me as possible. I was once a writer, getting an MFA in poetry, and now I’m reduced to having some trouble with sight and thinking putting together these simple messages, plus my own grammar sucks! now. God bless you, if there is a god. Keep as much faith as you can.
Brooke, this is for you. <3
http://whatislyme.com/brooke-on-lyme-suicide-and-the-invisible-knife-in-our-backs/
I have a mixed reaction. I don’t really have “Lyme friends” and frequently find I am better off limiting my Lyme reading, but I found myself welling up and crying upon reading about two different suicides.
On one hand, I understand, and hope the individuals find peace. On the other, I know their death will not likely be attributed to Lyme but instead depression. (Let’s face is, any cure is complicated and rare, and there are enormous financial interests here, but good research seems to be coming out of Europe and China.)
The isolation is tough. No co-worker camaraderie, no more shared recreational activities, and the “Jesus has a purpose” platitude wears thin and can further isolate you from your Source, if not encouraging you to find a more congruent spiritual path altogether, but this too can isolate you from your roots and family. Then, there is the financial destruction, and I’m not even going to begin cataloging the physical misery. So, I can’t say I’m surprised.
Still, it is hard thinking about someone making the preparations during their final hours, often going to lengths to spare others, only to spend their final moments alone rather than in the loving presence of family members.
Having just lost my younger sister Karlee 2 weeks ago to suicide, this blog moves me to my core. My sister had Lyme show up in a Zyto scan just a few months back. I have had strong suspicions that my Mother & both sisters have Lyme since I was diagnosed in 2010, based on the fact that I can track my own symptoms since birth. Karlee’s symptoms were very different than mine and she was very rarely ever ‘sick’. They were almost entirely brain related and mental so it was very difficult to convince her that it was most likely coming from the same source. We has started her (with a fair amount of reluctance) on a gentle homeopathic treatment course, as I cannot take antibiotics because of genetic issues with detoxification and I couldn’t risk putting her through that. It just was not meant to be though. Her time was her time, and I don’t think she truly ever believed that she could get better in the ways that I have. My family is heartbroken but are focusing on love and faith in every moment.
Thank you Lisa. Much Love.
Part of me dies when I read that someone in our community has committed suicide. We are all in this fight together. I have struggled with fighting off suicidal thoughts/feelings/actions since I was old enough to remember. If not for my child, I would be doing the same thing because living with this pain day in and day out is horrific and there is NOTHING but God and and my child keeping me here. I do not blame any one of these people who have ended their lives. It’s a sick and torturous ride we’re all on and without the help.. without any light at the end of the tunnel it really does justify questioning and even acting on the notion of, “Why am I even alive?”, “What is my purpose?”…. we are not living, we are EXISTING.. just going through the motions while we watch everyone else live their lives. We didn’t sign up for this. We should have SOME sort of support and financial help from the medical establishment. It’s absolutely pathetic that EVEN suicides do not warrant ANY attention from the media… I cannot stand to watch and hear and read of more deaths due to this nightmare of a disease. It is absolutely unfair and it is such a huge injustice to those we have lost if we do not fight in their honor and keep their spirits alive by pushing for changes. How long is it going to take though? How many more suicides? Do we have to commit suicide in the hopes that we can one day become a talking point for the medical community?? I am sick and disgusted and deeply saddened to my core that this is something we actually have to deal with on a REGULAR basis.
When i hear what one has done what i have thought, I think why is the USA land of the FREE not following though the FREE part, We lymies have the right to live pain FREE. I feel that the government is allowing this epidemic to continue to kill us. We have rights just as much as anyone else, WHY are we being treated as the enemy, WHY ARE WE FIGHTING ON OUR OWN. WHAT IS GOING ON THAT WE AS AMERICANS HAVE TO SUFFER? WHERE IS THIS DEATH TRAP GOING TO STOP. WHO HAS TO DIE BEFORE THE PEOPLE HAVE TO HEAR THE PEOPLE? HOW MANY ARE WE GOING TO BURY BEFORE THE PRESIDENT GETS A CALL TO HELP US OUT? T i dont understand, you are giving us the ok to kill ourselves by not listening to us AMERICANS that are suffering and it pains me to see human beings in pain… So many are helping third world countries when the united states has its own war going on here… Is it an invitation u want an invitation to my memorial,is that what you want or better yet a memorial of someone dear to you. Well i hope no one else dies because of this war, we have lost one too many already… please cant you see its a war …STOP KILLING US… STOP STANDING THERE WATCHING US ONE BT ONE GET SHOT DOWN PLEASE… CAN YOU HEAR ME ANYONE.You know what when it hits your family i will be here to help guide them in the right direction to help them help themselves… Im a fighter and i will help anyone fight…LETS ROLL AMERICA… ps excuse any mistakes in my letter if any because i can not focus due to co infections of this DEADLY disease… thank you for listening to me because i will be here for you and i will listen when the battle is yours… Kory James
I feel lost… It overwhelms me with sadness and at first makes me question why I choose to hang on. I understand their choice; it is one I have contemplated over in my mind many a day. Their choice though teaches me the consequences of pain it leaves behind to loved ones. It gives me insight to how our personal suffering and grief can cause a ripple effect among the many within our community who are hanging on by a thread. I remind myself to hold on not for me, but for others. It is, I believe, that in helping another we help ourselves.
I also understand the anger many feel, it consumes me too. I feel the medical society is responsible for the lives lost. Some call it suicide, but it is more like murder to me. They push us into a corner, trapped in pain. They belittle you, encourage your friends and family to doubt you, and leave you hopeless. It is a travesty!