My name is Marguerite Glazer, I’m from Montreal and I am a Lyme survivor. My health nightmare began 15 years ago, when I was 19 years old. Suddenly, I started feeling sick every single day.
I remember at first naïvely thinking: I’ll go to the doctor and the doctor will help get me well. But in the span of 12 years I saw over 30 doctors, generalists and specialists of all sorts, who all very quickly dismissed me with completely bogus diagnoses. Slowly but surely my symptoms worsened, they multiplied, affecting my entire body, making me increasingly incapacitated: unable to work, get out of the house much, take care of my basic needs. Extremely ill and repeatedly told there was nothing actually wrong with me, I considered suicide on numerous occasions. It felt like I was dying on the inside, and I had nowhere to turn.
After years of pain, exhaustion and relentless research, I finally did proper testing 2 years ago and was diagnosed with Lyme disease. For the record, I tested unequivocally CDC positive. With a mix of long-term antibiotics and other complementary methods, I gained my life back within a year and felt better than in my entire adult life.
After being diagnosed with Lyme disease I became involved in the Lyme community in Quebec, only to realize the extent of this devastating systemic issue. Je représente aujourd’hui tous les Québecois au prise avec cette maladie qui les empêche de vivre et pour laquelle ils n’ont aucune aide dans la province: déni de l’ampleur du problème, pas de soutien médical, pas d’aide financière ou gouvernementale, et une santé qui dégringole… c’est l’abandon total. On parle de centaines ou même de milliers de vies affectées et le nombre de cas d’infections augmente à un rythme faramineux. La situation est abbérante, ne fait qu’empirer, le problème est endémique et les patients ont depuis longtemps compris que ce n’est pas chez leurs médecins qu’ils vont trouver de l’aide.
Lyme disease sufferers desperately want to get to the root cause of their issues. Sadly, we are faced with MDs who show great contempt towards chronically ill patients, showing savage disregard for our suffering. We are told to stop looking into potential solutions and just accept that our problems are not real, that they are psychosomatic, of unknown origin, they label us with numerous misdiagnoses and of course push for us to take inappropriate medication. Patients are ridiculed and insulted. They are called attention-seeking hypochondriacs. They are told they have OCD because they focus so much on their health and symptoms. They are told that depression causes their seizures, that their anxiety causes their vision problems and that overall, they are just lazy people who don’t want to deal with life.
It is staggering how often we hear this nonsense being told to patients. On what evidence are these doctors basing their diagnoses? In a world of evidence-based medicine, it appears that doctors, and specifically infectious disease doctors, are often relying on their own magical thinking when it comes to Lyme patients. They freely throw around terms like placebo and psychosomatic, unwilling or maybe simply unable to do their actual job properly.
We are taken for fools, seen as gullible people drawn to a quacky diagnosis of chronic Lyme disease that we stumbled upon on the Internet. I have spoken to hundreds of Lyme patients and let me be clear: nobody, absolutely nobody wants to be part of this club. We fight strong and stick together because we have to, for survival. When the medical system is against you then much of society follows, and the isolation of the Lyme predicament is truly a gut wrenching and horribly difficult human experience. We fight because we don’t want anyone else to go through what we’ve been through. We fight so that people know about Lyme disease and other root causes of illness, and so they know how widespread it is. We fight so that others know that it can get better, that with the right help they can recover, that there is hope in hell.
Medical arrogance, a profound disconnect from the reality of chronic illness and over-reliance on outdated and flawed science and testing… those are the real diseases du jour.
Most doctors would rather believe that thousands are having the same mental and physical delusions than to question the mantras they have been taught to repeat. The rare compassionate doctors who are up to date with their scientific knowledge and who truly care about helping their patients heal are prosecuted by the medical police. It seems that we’ve gotten seriously off track when it comes to our idea of health care.
Let’s not forget that the primary goal of medicine is to make people well. We should all be concerned first and foremost by the reality of the Canadian Lyme disease patients. The present medical system in Canada is relying on outdated and flawed information, masqueraded as science, causing thousands undue suffering. We need to do better because the current standards are failing us miserably. And we need to do it now.
Lyme patients and their expert doctors have so much to teach: it’s up to everyone to listen. Being sick is not a crime, I hope this conference helps put a stop to the war that is being waged on Lyme disease patients.
Note: the Canadian conference to develop a framework for Lyme disease will be held on May 15-17, 2016, in Ottawa. The planning committee is composed of many stakeholder groups including representatives from the Public Health Agency of Canada, medical associations and patient groups.
Last year’s end-of-year video can be found here.
ps. I may need to review my definitions of sympathy and empathy, as looking into them now I realize what I said in the video doesn’t make perfect sense. The issue was this: I had to learn to be empathetic with my Lyme friends and be able to listen to them and truly care about what they are going through and try to help as I can, but all this without having it destroy me mentally and without identifying too much with their pain, simply because I know that pain too well and it could kill me if I let it. And because I don’t think it’s fair that I feel better and they don’t all. I created separate buckets in my mind, a bucket for my experience and my pain, one for my Lyme friends, one for how messed up the medical world is, etc., and I work daily at not mixing up all the buckets, as it could come at a great cost for my mental health. Voilà.
Lyme disease infographic by Daniel Cameron, M.D. & Associates
A few weeks ago, on July 3, 2015, I was invited to participate in a 30-minute radio interview with host Isabelle Maréchal on a province-wide radio program to talk about Lyme disease. The show also invited two other lymies (my friends) and gave us ample space to discuss the issue as we know it to be. We were thrilled at the quality of the work done by the interviewer and her willingness to get to the heart of things. We spoke of unreliability of tests, the need to test in the USA, the need for long-term treatment, the extent to which this illness is debilitating, the presence of coinfections, the difficulty of dealing with closed-minded doctors, etc. The main question/angle they tried to take was: More and more people from Quebec are getting sick from a tick bite and develop Lyme disease, why are they left to fend for themselves?
The full radio interview is here (in French): Des Québécois ont été contaminés par une tique et ont contracté la maladie de Lyme. Le nombre de cas augmente. Pourquoi sont-ils laissés à eux-mêmes?
Concerning this article: ME: fear of exercise exacerbates chronic fatigue syndrome, say researchers (and many others like it that have come out this week with titles such as “‘Fear of exercise’ is biggest barrier to chronic fatigue syndrome recovery” and “Key to warding off chronic fatigue syndrome identified”, which are straight up lies)
It’s incredible how disconnected medical research and its media reporting can be from the reality of sufferers. I was told 12 years ago that I have some sort of chronic fatigue (called myalgic encephalomyelitis now, ME, or ME/CFS for chronic fatigue syndrome), and I know now that my Lyme infections are at the root of it all. Many ME sufferers do not yet know why they are ill, but that does not make their illness any less real or completely debilitating (and it is very likely caused by some bacteria, viruses, parasites, gut issues, environmental and chemical sensitivities, etc., etc.). I follow many people who suffer from ME on social media and I see the pain that this kind of irresponsible reporting causes. It also encourages even less understanding and compassion from doctors and society towards those who already suffer so much physical and mental strain from their illness. This is the first paragraph of the article:
“People suffering from ME should get out of bed and exercise if they want to alleviate their condition, a major study by King’s College has found.”
Are you fucking serious? If you’ve followed me here for a while, I do hope that my story allows you to see and understand how offensive, hurtful and simply ridiculous that statement is. Appropriate exercise is very important and should be encouraged, of course, but ME is no joke and when you can’t, you CAN’T. It is maddening to be a slave to your ill body like that and fear of exercise has nothing to do with not being able to get out of bed.
It should be no surprise, I guess, that “when asked whether the illness was purely psychological, Professor Chalder (of Kings College) said: “I think everything is in the brain. Some people are going to say that, but we know that beliefs are incredibly powerful as are behaviours irrespective of the nature of the illness”.”
I agree beliefs are a huge part of the healing process, but would you approach a cancer patient and tell him that his fear of nutrition is the biggest obstacle in the fight to reduce his malignant tumour, when his body just doesn’t tolerate any food intake? I spent over 10 years working on my beliefs, behaviours, and on trying my best to exercise despite my very painful and exhausted body, and if I attempt to see any sort of correlation there, it’s that all my efforts have actually been inversely proportional to me getting better… but then I know that’s not how life or science works.