It's been a full month since my last visit to the forum and my flaky streak continues as my online footprints prove me to be a 'hit and runner.' When people talk about 'online footprints' my first thought is, 'well the Tory government can bloody well see how sick I am because I post so much and Google so much.' My second thought is, 'why do I join all these communities and write these posts if I then stay offline for a week, or a month, like how rude must I appear to people?' I know that the internet is just the internet; I have seen many people 'disappear' in my time online (particularly in the mental health communities), and I know that chronic illness is, logically, going to stop people from actively engaging online as much as other people do. Still, I wonder why I bother if I'm just going to shout something and then walk off. My online footprints show I am a lost wanderer. Not really belonging anywhere. Just breezing through.
It's also hard to know where to begin when you decide to get writing. A foggy, fuzzy mind is no help when you're trying to work out how to articulate your current concerns and symptoms, the experiences of the last few days, or weeks. Since my last entry I have thought a lot about how to speak to a doctor; more specifically, WHO the doctor should be. My lifetime GP, the only doctor who has ever understood me, has retired. I'm now faced with the task of finding a new GP, one that can listen to and fully comprehend my story, as I start from scratch. My former GP had known me since I was a baby. My story is not a simple one, as I've been a psychiatric case for most of my life. I'm painfully aware of how much that complicates things. Mental health professionals, especially, have made me painfully aware of how much that complicates things in the minds of others.
My first post here was a thread about how little credibility I seem to have as a lifelong psychiatric patient. It made me hesitant to make my concern public on this forum because I know what a battle it is to have M.E/CFS taken seriously as a physical illness and not a psychiatric one. It made me feel like I should be shunned. Without going into it again too deeply, I've had anxiety for most of my 29 years, diagnosed with social and generalised anxiety plus agoraphobia at 14, and my life has pretty much been defined by that since. In October 2011, I finally hit a wall in my toxic, 5-year relationship, and my body responded to the hopelessness of the situation and my need to escape it by panicking, my heart rate leaping to 120, then 170, for which I was hospitalised for 24 hours as they ran tests. When I came home, I noticed a number of physical sensations that I'd never felt before, such as permanent indigestion, a light, fuzzy head, dizziness. I also suffered a vomiting bug in November, but I can't be sure if symptoms actually began after that. I was told, 'It's your heart rate.' All right. I improved after a couple of months, got mentally and emotionally calmer and healthier, ended my relationship firmly with no fanfare, and started up my life. Symptoms stayed and I noticed more. 'It's the beta blockers.' I came off the beta blockers. 'You have acid reflux and maybe some IBS.' And on it went, years of mostly acid reflux treatment (to NO relief, I might add), with little attention on my numerous other symptoms, until in 2017 I decided enough was enough and wrote my GP a letter, detailing all the symptoms I experience. I was then tested for celiac disease as my father had tested positive in blood a few months before (he didn't even know), but both my blood and my biopsy came back completely negative. My father's biopsy was then negative, too. I haven't heard from the hospital since, and I'm left without a GP.
The plan of action I keep coming back to is speaking to my father's GP. He knows all about dad's M.E and his celiac results, and if I want any answers to this mysterious illness of my own, my dad's GP may be the best candidate to consider me seriously. I am, after all, directly related - I'm his daughter, my symptoms are many, varied, debilitating, consistent with testimony about M.E/CFS (and celiac), and a few mirror my father. Logically, he may be my best hope. However, my mum disagrees, saying he's 'weird' and 'doesn't know' anything about me, unlike my old doctor's son, who I have seen a number of times but dislike because he condescends to me and makes me feel like a stupid child. He may know me, but he doesn't understand me. And that's the problem.
It has been very, very hard to get people to take my physical complaints seriously, especially since my celiac biopsy came back negative. Even a gastroenterologist in 2017, after I described the last few months and the sudden worsening of my reflux, which now had me vomiting, throwing up acid in the night, unable to swallow medications, cutting out foods I previously ate just fine, told me he couldn't understand my weight loss (a stone in a year), and referred me to a psychiatric dietitian for an eating disorder.
It's a fight for anyone with M.E, or Celiac Disease or any other hard-to-diagnose illness, to be taken seriously. It's another fight altogether when you have a very long, very full history of psychiatric disorders. I'm a nervous nelly. I'm a paranoid nut. I'm young. And I'm a woman. All of this scratches a line through my file and gets me buried away in a drawer. I can't have a physical syndrome/disease, because apart from acid in my esophagus and a hiatal hernia, nothing is evidently wrong with me. The abnormalities are in my mind, not my body. I do not have a neurological disease, I have a psychiatric disorder. This has been hammered home to me on more than one occasion by mental health workers who have sat in my living room and told me, in no uncertain terms, that stress and depression are giving me these symptoms and my mind is conjuring them so I can avoid life.
The saddest thing is, sometimes I believe it.
It's also hard to know where to begin when you decide to get writing. A foggy, fuzzy mind is no help when you're trying to work out how to articulate your current concerns and symptoms, the experiences of the last few days, or weeks. Since my last entry I have thought a lot about how to speak to a doctor; more specifically, WHO the doctor should be. My lifetime GP, the only doctor who has ever understood me, has retired. I'm now faced with the task of finding a new GP, one that can listen to and fully comprehend my story, as I start from scratch. My former GP had known me since I was a baby. My story is not a simple one, as I've been a psychiatric case for most of my life. I'm painfully aware of how much that complicates things. Mental health professionals, especially, have made me painfully aware of how much that complicates things in the minds of others.
My first post here was a thread about how little credibility I seem to have as a lifelong psychiatric patient. It made me hesitant to make my concern public on this forum because I know what a battle it is to have M.E/CFS taken seriously as a physical illness and not a psychiatric one. It made me feel like I should be shunned. Without going into it again too deeply, I've had anxiety for most of my 29 years, diagnosed with social and generalised anxiety plus agoraphobia at 14, and my life has pretty much been defined by that since. In October 2011, I finally hit a wall in my toxic, 5-year relationship, and my body responded to the hopelessness of the situation and my need to escape it by panicking, my heart rate leaping to 120, then 170, for which I was hospitalised for 24 hours as they ran tests. When I came home, I noticed a number of physical sensations that I'd never felt before, such as permanent indigestion, a light, fuzzy head, dizziness. I also suffered a vomiting bug in November, but I can't be sure if symptoms actually began after that. I was told, 'It's your heart rate.' All right. I improved after a couple of months, got mentally and emotionally calmer and healthier, ended my relationship firmly with no fanfare, and started up my life. Symptoms stayed and I noticed more. 'It's the beta blockers.' I came off the beta blockers. 'You have acid reflux and maybe some IBS.' And on it went, years of mostly acid reflux treatment (to NO relief, I might add), with little attention on my numerous other symptoms, until in 2017 I decided enough was enough and wrote my GP a letter, detailing all the symptoms I experience. I was then tested for celiac disease as my father had tested positive in blood a few months before (he didn't even know), but both my blood and my biopsy came back completely negative. My father's biopsy was then negative, too. I haven't heard from the hospital since, and I'm left without a GP.
The plan of action I keep coming back to is speaking to my father's GP. He knows all about dad's M.E and his celiac results, and if I want any answers to this mysterious illness of my own, my dad's GP may be the best candidate to consider me seriously. I am, after all, directly related - I'm his daughter, my symptoms are many, varied, debilitating, consistent with testimony about M.E/CFS (and celiac), and a few mirror my father. Logically, he may be my best hope. However, my mum disagrees, saying he's 'weird' and 'doesn't know' anything about me, unlike my old doctor's son, who I have seen a number of times but dislike because he condescends to me and makes me feel like a stupid child. He may know me, but he doesn't understand me. And that's the problem.
It has been very, very hard to get people to take my physical complaints seriously, especially since my celiac biopsy came back negative. Even a gastroenterologist in 2017, after I described the last few months and the sudden worsening of my reflux, which now had me vomiting, throwing up acid in the night, unable to swallow medications, cutting out foods I previously ate just fine, told me he couldn't understand my weight loss (a stone in a year), and referred me to a psychiatric dietitian for an eating disorder.
It's a fight for anyone with M.E, or Celiac Disease or any other hard-to-diagnose illness, to be taken seriously. It's another fight altogether when you have a very long, very full history of psychiatric disorders. I'm a nervous nelly. I'm a paranoid nut. I'm young. And I'm a woman. All of this scratches a line through my file and gets me buried away in a drawer. I can't have a physical syndrome/disease, because apart from acid in my esophagus and a hiatal hernia, nothing is evidently wrong with me. The abnormalities are in my mind, not my body. I do not have a neurological disease, I have a psychiatric disorder. This has been hammered home to me on more than one occasion by mental health workers who have sat in my living room and told me, in no uncertain terms, that stress and depression are giving me these symptoms and my mind is conjuring them so I can avoid life.
The saddest thing is, sometimes I believe it.
