your experience is very similar to mine. i'm so sorry that you are dealing with this, in a way i know how you feel. specially with doctors that dismiss you and blame it on your mental health, they just make everything worse. i also suffer from mental health issues so that's the go to excuse when they don't want to bother with treating my health.
i have IBS, chronic gastritis, gallbladder tumors, chronic fatigue, scoliosis, bad respiratory issues, fibromyalgia, allergies, and those are only the ones that i've been actually diagnosed with by a medical professional. some doctors think that i may even have multiple sclerosis but i suspect that the root cause is some genetic issue.
i've been trying to get a good doctor for a long time now, and at this point i just don't have any hope of ever getting a formal diagnosis of whatever i have, things just keep getting worse and worse and this world crisis is not helping at all, just when i finally get an appointment with a geneticist so i can get some answers the world crumbles and it gets canceled.
your symptoms sound like a textbook case of a conjunctive tissue disorder, have you looked into ehlers danlos syndrome or similar conditions? they usually go undetected until you get in your 20's and your health crashes.
the issue is that it's extremely hard to get a doctor with knowledge about it, some people take 20 years to find a doctor that can diagnose them with it, and the treatment is only supportive so even the ones who know what these kind of conditions are usually refuse to formally diagnose with excuses like "there's nothing you can do about it".
I looked up the disorders you mention, i don't think i have those. At least, i don't think my skin problems are that bad. I have always focused more on thyroid, hormone imbalance or autoimmune problems as the base issues for me, but every test comes back "normal" except for a lowish testosterone which is expected. I always knew at the back of my head that my problems are probably genetic, and i will probably spend the rest of my life trying to figure it out while my health continues to deteriorate.
Like you, the current corona virus thing has wrecked all my efforts and plans. The whole healthcare system here in NYC is shut down. The only things available to me are urgent care and very basic family practitioners who can only treat colds and do basic blood tests. I don't know what to do anymore. I was coming up with a plan with my therapist, but haven't heard from her or the mental health place in weeks. I think this is it. I am stuck here deteriorating in every way. This is the definition of living hell.
I too have stomach and enteric problems that nobody can diagnose. I have done gastroscopies and colonoscopies and everything look normal. Yet I still hurt almost every day when I eat something.
Yeah, i have done every kinds of tests over the years for my stomach issues. They have insert tubes down my throat, up my as, and everything else in between. Nothing. They just do it to milk my insurance money. I knew the test would come back normal, they knew whatever i have is beyond their ability, and they don't even try to help me. I have seen 2 different GIs last year, and both try to get rid of me as soon as possible. I have never caused trouble, or anything, i was genuinely trying to get help, but i guess they saw my medical record and it spelled "trouble". Makes me mad to just think about it.
Very much so. I know my story. Depression as a child plus OCD anxiety led to a life of alcoholism in order to cope. That mixed with SSRI over use in order to try and stop drinking, left my body wrecked at 47. Metabolism ruined. Peeing constantly, day and night. Bowel ceased to function without excessive medication. All test so far come back negative
And so begins a fresh round of depression and anxiety at not being listened to whilst the symptoms rage out of control.
Doctors have spent four years of not listening and gas-lighting my story to fit their own over-simplification of things, so that they can give me a label and prescribe medications. Sod whether that label is accurate or not. And so one receives a mental health diagnosis, over and above any physical diagnosis.
They treat symptoms, not what's causing them.
They don't treat the individual.
They don't take co-morbidities into account when treating symptoms.
They label anything they can't understand as 'a mental health issue.'
They then discriminate against individuals who are so 'diagnosed' and marginalise the health issues that brought them there in the first place, creating the very depressive conditions that they claim to want to treat.
They prescribe anti-depressants as a panacea for anything they can't understand, creating dependence and compliance and then, paradoxically, want the patient to have the determination and motivation to fend for themselves, even though they have removed that very drive with over prescription.
Since I've been out from under the influence of the doctors, I've been attempting to listen to what my body needs in order to better manage my ailments. I've also been attempting to listen to my own inner voice more and be honest with my thoughts and feelings. My body and mind are both trying to find an equilibrium that the doctors would have drastically upset.
But I do still need medical help, diagnosis and treatment. If I ever get back to them, I need to be in control of my treatment, without upsetting their authority. Not allow the continual gas-lighting and non-joined up thinking that so many of them suffer from. That's not an easy path to walk when you are unwell and with the current climate it's even more distant.
Wow, you summed it up perfectly. The points you made on the doctors are exactly my experiences as well. I am so sorry you have to go through that as well. I agree with what you said about taking control, not letting doctors gas lighting, but work with them, to basically find some balance the doctor and patient. I understand that doctors have a frame that they operate in, and some people who are outside of that frame can be difficult for them, and i have always tried to be understanding, but each and every trial that i go through, i get wrecked with hopelessness. What kind of sickness do i have?! What am i supposed to do?! Where are the right doctors that actually want to help me instead of labeling me "trouble" and try to get rid of me right away. I don't understand this. How am i supposed to function, get through the daily grind, face random challenges, combat through depression and anxiety while doctors, the people who are supposed to help me, make me feel hopeless. Is there anything more maddening?
