On your Chiari Journey what have you found to be the hardest thing to deal with.....?
I understand all of your post it is really difficult i have been off work now for about 7 weeks. Im hoping to go back next week but will have to see. I have been to and from doctors and they just dont know and it is fustrating. I have been referred by my gp to see the neurologist here and there is a 2 to 5 month waiting list and yeah so it just a long waiting game. Im lucky my workplace is beening really good and that the family support as well
The hardest thing that I have had to deal with on my Chiari journey is a lack of empathy by others for the suffering that I have endured from this affliction. I do not know how else to say it. I am 7 1/2 months post-surgery and I am grateful not to have had a headache since the surgery. So, I don't want folks to think that I am ungrateful or complaining. I am very thankful. However, for the years preceding the surgery and for the 7 ½ months afterwards, I have received almost no empathy from doctors, family, or friends.
The first few years of becoming symptomatic with Chiari was a journey through what should have been Dante's fifth level of hell: Hypochondriasis. As a psycho-therapist, I am well aware of what hypochondriasis is. I have treated actual hypochondriacs … with some success but it is a very difficult psychological struggle to overcome. With that said, just because a human being presents with a constellation of disabling symptoms that no one doctor can explain, it does not mean that individual is a hypochondriac. Actually, perhaps even ironically, the doctors were probably the most polite in this level of hell. They would suggest that I have a "heightened sensitivity to somatic stimuli". My family, well, they employed the Neanderthal approach: "Suck it up! and Just get over it!" Friends, they simply were unable to be present to me. As my health declined, I got frustrated, anxious, depressed, and withdrew. I could barely make it through a day. I eventually had to leave my job. Most of my friends left our relationship – too complicated I guess. It was very lonely and confusing. I came painfully close to committing suicide. O.k. … maybe that last one was exacerbated by the neurontin but it is so freakin’ true!
Luckily, the migraine headaches that I had suffered from my whole life increased in frequency, severity, and duration. Oh yea! What a blessing! I think to myself: “Really, I am not a hypochondriac? What a surprise! I really have something that is actually wrong with me? What? We should get an MRI of my brain? Really?” The results: Borderline Chiari Malformation. Over the course of next two years, I spent 3 to 4 days a week in a dark and quiet room in excruciating pain – 9 to 10 on a pain scale. I had a constant headache – as have you all. For those two years, I almost never fell below a 6 on a headache pain scale. I saw neurologists and neurosurgeons that used words like “insignificant tonsilar descent” or “incidental finding” to describe the part of my brain that was protruding through the hole in the bottom of my skull. Now, as a therapist, I am trained to recognize psychological defenses and my specialty is personality disorders. I am not sure, but I think that just about everyone that goes into the field of neurology and neurosurgery must be classified as having a narcissistic personality disorder in order to get accepted into Residency. The reason that I say this is that the level of dismissiveness that I encountered from the medical community – especially neurologists, neurosurgeons, and their staffs - was profound. I could not have imagined it had I not experienced it. Personally, as a practitioner of health - though be it psychological - if one of my client’s life had totally been derailed and they had debilitating head pain and a whole host of other neurological symptoms (which included wetting the bed ha, ha), I might consider the correlation between the herniation of that client’s brain on an MRI and their symptoms to be rather significant. However, evidently, these well trained physicians prefer basking in their own brilliance rather than critically applying their knowledge to diagnose their patients. Hence, they chose to be condescendingly dismissive time and time again. I wish that I could have bet on it in Las Vegas. In any event, I received no empathy from the neurology department.
Oh yea, pain. Did I mention that I was in a lot of pain? Besides the headaches it was the neuropathic pain / neuropathy of the day, week, or month. Plus, the noise and sound sensitivity that would immediately trigger a migraine level headache that could last up to three days – spent alone again in a dark room. Does anyone really care? By now, my friends had faded into the background. I would emerge from my room after a three day headache and my religious superior and brothers (I am a Jesuit Priest) would ask me how the work on my doctoral dissertation is coming along. My family decided to “fix” me. I’m not sure which was more psychically painful and humiliating - the isolation, being constantly misunderstood, or being so pathetic that I needed to be “fixed”. I do know that those who did try to help had good intentions but, sadly, did or could not empathize with anything that I was going through. I once said to a relative: “I wish that I had cancer because you would not be telling me to do get out of the house and get going if my headaches were caused by a brain tumor.” Although their support was, in the end, very helpful in encouraging me to seek treatment and, eventually surgery, it completely lacked any empathy for what I was going through. The affliction of Chiari is social, psychological, spiritual, and physical. In many ways, if you let it progress long enough, Chiari robs you of everything but your soul. Even God seems to leave the building – it’s that dark inside. Perhaps people who have not experienced that level of affliction cannot empathize with it. I do not know.
Here I am today - 7 ½ months post-op. The sun is out and I cannot bear the thought of going outside because I have a conditioned anxiety response from having debilitating head pain when exposed to light or certain sounds for so long. I cannot bear to be in a room full of people because it sounds like I am on the runway of an airport (not helpful for a priest – ha, ha). When a helicopter hovers over my building, it sounds like it is landing on my head. The sound of a siren makes me feel as if the world is collapsing into a vacuum and it is going to swallow me up into an abyss. The air conditioner sounds like an infantry attack but it is better than the sirens and helicopters … etc. Fluorescent lights – forget about it! I have practiced mindfulness meditation for 17 years and I am trying to re-condition myself but it is not progressing very fast. My ability to function cognitively is about at 50% of what it was before I started becoming symptomatic. Did I mention the PTSD that I had worked through for 20 years coming back after the trauma of this illness and the surgery? Or, how about the unprocessed psychological grief of losing just about everything? Oh yea, I still occasionally wet the bed, ha, ha. I guess that I need a “blue light special” on Depends because I cannot afford them!
Any empathy? Nope!
It is right back to Dante’s 5th level of hell – the blank stare which translates: He is a hypochondriac. “How can a surgery be a treatment and not a cure? But you look so much better? You look great!”
Why did I write this? I know that those of you with Chiari can relate with this but I really wrote it for your friends and family. SO SHOW IT TO THEM! If I could have one thing in the world right now, it would be someone who could be present with me as a friend or a companion and empathize with what I have been through and what I am still struggling with. So, if you are a friend or family member of someone with Chiari, please be empathetic of the person that you love who is going through this nightmarish affliction. I know that Chiari is ambiguous and confusing and frustrating for you because you don’t know why the person that you love is suffering so much physically plus they appear; moody, withdrawn, apathetic, listless, shut-down, and, perhaps, hopeless. Furthermore, there are NO GOOD ANSWERS TO ANY QUESTIONS when it comes to this affliction - even by the experts. Despite the frustrating vagueness of Chiari that your friend or loved one is going through … please, please try your best to be empathetic.
Empathy is the experience of understanding another person's condition from their perspective. You place yourself in their shoes and feel what they are feeling. So, before you open your mouth to respond to a friend or family member with Chiari, take a minute to consider what they are complaining about, frustrated with, or simply experiencing by trying to understand what he or she is going through physically, psychologically, spiritually, and socially. And, before you say anything, ask yourself the question: Is what I am about to say compassionate, caring, and understanding of what this human being before me with Chiari is going through? If the answer is in any way ‘no’ … then keep your mouth shut – please! But also, please, please stay present to them and try, please try to understand how de-humanizing this affliction really is. Sorry for the drama but it is real. Thank you. Fr. D
Thanks for your post. I am nearly 4 years after surgery and it is still all the same. It is a hard road. The doctors have no idea why i am still like this and that is their words they cant explain it.
I leave the doctors sometimes and feel as though its all in my head so im not really looking forward to the neurologist appointment when it comes around.
Thanks once again
I'm sending a copy of this to my 25 yr old daughter. I have been sending her info on CM for the last several years since my diagnosis and she still doesn't understand what it is. It doesn't help that my ex husband is telling her that this is not a "real" disease and that I'm using anything I can to get disability (which I got before the diagnosis).
Her Aunt is also and RN and told her that she has talked to a few doctors and they said that this was a real disorder but, that it was virtually painless and that 99% of the people that have it are Hypochondriacs because they blame every little thing that is wrong with them on the CM. So now my daughter thinks there is nothing wrong with me and I should just quit being a big baby and get over the pain.
I think that the hardest challenge for me so far is trying to get my daughter to understand CM and what I'm going thru and I also don't understand why there is such a BIG difference in opinions about what doctors think about CM and how easily dismissed it is.
Fr. D said:
The hardest thing that I have had to deal with on my Chiari journey is a lack of empathy by others for the suffering that I have endured from this affliction. I do not know how else to say it. I am 7 1/2 months post-surgery and I am grateful not to have had a headache since the surgery. So, I don't want folks to think that I am ungrateful or complaining. I am very thankful. However, for the years preceding the surgery and for the 7 ½ months afterwards, I have received almost no empathy from doctors, family, or friends.
The first few years of becoming symptomatic with Chiari was a journey through what should have been Dante's fifth level of hell: Hypochondriasis. As a psycho-therapist, I am well aware of what hypochondriasis is. I have treated actual hypochondriacs … with some success but it is a very difficult psychological struggle to overcome. With that said, just because a human being presents with a constellation of disabling symptoms that no one doctor can explain, it does not mean that individual is a hypochondriac. Actually, perhaps even ironically, the doctors were probably the most polite in this level of hell. They would suggest that I have a "heightened sensitivity to somatic stimuli". My family, well, they employed the Neanderthal approach: "Suck it up! and Just get over it!" Friends, they simply were unable to be present to me. As my health declined, I got frustrated, anxious, depressed, and withdrew. I could barely make it through a day. I eventually had to leave my job. Most of my friends left our relationship – too complicated I guess. It was very lonely and confusing. I came painfully close to committing suicide. O.k. … maybe that last one was exacerbated by the neurontin but it is so freakin’ true!
Luckily, the migraine headaches that I had suffered from my whole life increased in frequency, severity, and duration. Oh yea! What a blessing! I think to myself: “Really, I am not a hypochondriac? What a surprise! I really have something that is actually wrong with me? What? We should get an MRI of my brain? Really?” The results: Borderline Chiari Malformation. Over the course of next two years, I spent 3 to 4 days a week in a dark and quiet room in excruciating pain – 9 to 10 on a pain scale. I had a constant headache – as have you all. For those two years, I almost never fell below a 6 on a headache pain scale. I saw neurologists and neurosurgeons that used words like “insignificant tonsilar descent” or “incidental finding” to describe the part of my brain that was protruding through the hole in the bottom of my skull. Now, as a therapist, I am trained to recognize psychological defenses and my specialty is personality disorders. I am not sure, but I think that just about everyone that goes into the field of neurology and neurosurgery must be classified as having a narcissistic personality disorder in order to get accepted into Residency. The reason that I say this is that the level of dismissiveness that I encountered from the medical community – especially neurologists, neurosurgeons, and their staffs - was profound. I could not have imagined it had I not experienced it. Personally, as a practitioner of health - though be it psychological - if one of my client’s life had totally been derailed and they had debilitating head pain and a whole host of other neurological symptoms (which included wetting the bed ha, ha), I might consider the correlation between the herniation of that client’s brain on an MRI and their symptoms to be rather significant. However, evidently, these well trained physicians prefer basking in their own brilliance rather than critically applying their knowledge to diagnose their patients. Hence, they chose to be condescendingly dismissive time and time again. I wish that I could have bet on it in Las Vegas. In any event, I received no empathy from the neurology department.
Oh yea, pain. Did I mention that I was in a lot of pain? Besides the headaches it was the neuropathic pain / neuropathy of the day, week, or month. Plus, the noise and sound sensitivity that would immediately trigger a migraine level headache that could last up to three days – spent alone again in a dark room. Does anyone really care? By now, my friends had faded into the background. I would emerge from my room after a three day headache and my religious superior and brothers (I am a Jesuit Priest) would ask me how the work on my doctoral dissertation is coming along. My family decided to “fix” me. I’m not sure which was more psychically painful and humiliating - the isolation, being constantly misunderstood, or being so pathetic that I needed to be “fixed”. I do know that those who did try to help had good intentions but, sadly, did or could not empathize with anything that I was going through. I once said to a relative: “I wish that I had cancer because you would not be telling me to do get out of the house and get going if my headaches were caused by a brain tumor.” Although their support was, in the end, very helpful in encouraging me to seek treatment and, eventually surgery, it completely lacked any empathy for what I was going through. The affliction of Chiari is social, psychological, spiritual, and physical. In many ways, if you let it progress long enough, Chiari robs you of everything but your soul. Even God seems to leave the building – it’s that dark inside. Perhaps people who have not experienced that level of affliction cannot empathize with it. I do not know.
Here I am today - 7 ½ months post-op. The sun is out and I cannot bear the thought of going outside because I have a conditioned anxiety response from having debilitating head pain when exposed to light or certain sounds for so long. I cannot bear to be in a room full of people because it sounds like I am on the runway of an airport (not helpful for a priest – ha, ha). When a helicopter hovers over my building, it sounds like it is landing on my head. The sound of a siren makes me feel as if the world is collapsing into a vacuum and it is going to swallow me up into an abyss. The air conditioner sounds like an infantry attack but it is better than the sirens and helicopters … etc. Fluorescent lights – forget about it! I have practiced mindfulness meditation for 17 years and I am trying to re-condition myself but it is not progressing very fast. My ability to function cognitively is about at 50% of what it was before I started becoming symptomatic. Did I mention the PTSD that I had worked through for 20 years coming back after the trauma of this illness and the surgery? Or, how about the unprocessed psychological grief of losing just about everything? Oh yea, I still occasionally wet the bed, ha, ha. I guess that I need a “blue light special” on Depends because I cannot afford them!
Any empathy? Nope!
It is right back to Dante’s 5th level of hell – the blank stare which translates: He is a hypochondriac. “How can a surgery be a treatment and not a cure? But you look so much better? You look great!”
Why did I write this? I know that those of you with Chiari can relate with this but I really wrote it for your friends and family. SO SHOW IT TO THEM! If I could have one thing in the world right now, it would be someone who could be present with me as a friend or a companion and empathize with what I have been through and what I am still struggling with. So, if you are a friend or family member of someone with Chiari, please be empathetic of the person that you love who is going through this nightmarish affliction. I know that Chiari is ambiguous and confusing and frustrating for you because you don’t know why the person that you love is suffering so much physically plus they appear; moody, withdrawn, apathetic, listless, shut-down, and, perhaps, hopeless. Furthermore, there are NO GOOD ANSWERS TO ANY QUESTIONS when it comes to this affliction - even by the experts. Despite the frustrating vagueness of Chiari that your friend or loved one is going through … please, please try your best to be empathetic.
Empathy is the experience of understanding another person's condition from their perspective. You place yourself in their shoes and feel what they are feeling. So, before you open your mouth to respond to a friend or family member with Chiari, take a minute to consider what they are complaining about, frustrated with, or simply experiencing by trying to understand what he or she is going through physically, psychologically, spiritually, and socially. And, before you say anything, ask yourself the question: Is what I am about to say compassionate, caring, and understanding of what this human being before me with Chiari is going through? If the answer is in any way ‘no’ … then keep your mouth shut – please! But also, please, please stay present to them and try, please try to understand how de-humanizing this affliction really is. Sorry for the drama but it is real. Thank you. Fr. D