I feel so failed by every medical professional I have ever seen
I'm sorry, y'all, I just need to rant and vent here for a bit. I'm going to apologize in advance for all the yelling and cussing I'm about to do.
So I've been a type 1 diabetic since 1995 when I was diagnosed at age 6. My teen years were really rough (for a lot of reasons) and somewhere along the way I quit caring about my health. but here's the thing. I just learned the term "burnout" about 3 weeks ago. I've been struggling with a chronic illness for 24 years and this is the first time anybody has ever told me that this is a thing. Turns out I've been in burnout mode for 15-20 years. Nobody ever told me about this shit. Not my endos, not my GPs, not my therapists (I'm especially mad at the therapists. Like, I don't expect them to know all that much about type 1 specifically as it's not so common, but I'm sure EVERYBODY with ANY kind of chronic illness goes thru some form of this.) I mean I went to a fucking diabetes camp every summer for like 8 years and not once did any of the councilors sit us down and say "hey, look, there are going to be times where you feel overwhelmed and can't cope with the daily struggles of doing one of your organ's job for it. but it's ok. here are some healthy coping statagies." No. I feel like if anybody had just said "the way you're feeling is normal, here's how to deal with it" I'd be so much healthier. Both physically and emotionally. I mean, jesus, I was a fucking CHILD and instead of showing compassion and understanding they always treated me like a criminal for just trying to pretend I was normal. And so I have been beating myself up and calling myself a failure and a shitty person and "bad diabetic" for 20 years because that's what every Dr I've ever seen has made me feel like.
So there's that.
But wait, it gets worse
Because I learned the word "burnout" and that it's normal I joined a bunch of T1D support groups on social media to see if anybody DID have some good coping mechanisms. And I learned something. 15-20% of type 1's also suffer from thyroid problems. I've had 4 different Dr's tell me I have an enlarged thyroid and not one fucking one of them bothered to ask me if I had any of the symptoms to go with it. None of them ever seemed even slightly concerned so I forgot all about it. But since so many of my fellow T1's seem to be having problems I gooogled the symptoms out of curiosity...
And it turns out that I have every single fucking one.
And have had them since I was maybe 9 or 10.
And I've complained about the symptoms for years.
And they all just fucking look at me like "what do you expect me to do about it?"
Like... I can take the little things without complaining. The constipation, dry skin, inability to loose weight (boy is that a sore spot with Dr's as of right now,) the irregular periods, achey joints and muscles, brittle nails, occasional dizzy spells and a sometimes weird heartrate, and intolerance to temperature changes, no those are just annoying and I can put up with them. But the brain fog and severe chronic fatigue coupled with the depression and anxiety that have plagued my my entire life since my tweens THOSE I'm pissed about. Do you know how different my life could have been if I had been able to concentrate on my school work? If i'd had the energy to participate in any kind of extra curricular activities? If I hadn't been too tired to even attempt to make friends?
They should have fixed this shit when I was a teenager.
And yes, it can be argued that most of those symptoms are also diabetes things or that the depression and anxiety are the product of my shitty childhood, or maybe I really am just a fat, lazy fuck like all the Dr's and dietitians have implied that I am. But a 9 year old shouldn't be so exhausted that they can barely keep their eyes open at school and an 11 year old shouldn't be complaining of constant severe joint pain. Instead everybody (including my own family) said "eh you're fat kid, get more exercise" (I wasn't fat, chubby yes, obese no) or flat out called me a hypochondriac or acted like I was just complaining to get attention (which isn't true. As a kid I mostly just wanted to be invisible and left alone. Having people fawn all over me when I was sick is still particular kind of hell.)
I'm apprenticing to be a tattoo artist in my spare time. I would have gone after this much earlier and much harder and I would be a full time tattoo artist and owner of my own shop by if I had ever had the energy to dedicate myself to it like I should. But instead I spend half my days literally sobbing on the way to work to my dead end full time job because I'm too exhausted to go but I have to force myself because if I don't I won't have a roof over my head. And I know I'm going to be too drained by the end of the week to do anything more than take up space when I get to the tattoo shop.
And the worst part about it is that I have absolutely no faith that if I go to the Dr and say "look here's the problem, lets do something about it" that anything will actually change. I don't have insurance so I go to a low income county family health clinic and the only Dr I have access to there isn't even an actual doctor, he's a nurse practitioner with a bad attitude. This is the same guy that said to my mother on her last visit that she was a waste of his time "because there were hard working middle class people he could be helping instead" (yes, he ACTUALLY said the part in quotes) I have to drive 2 hours away to their sister clinic to be seen by somebody else.
I'm just so ANGRY at the entire situation, rage doesn't even come close to describing it. I haven't been this angry in over a decade and I don't know how to handle it. I've been pacing around my office for the last couple days trying to come to grips with it. The only consolation I can find in all this is if I hadn't taken the shitty path that I have I wouldn't have met my fiance but goddamn....like...shit. there aren't even enough cusswords to express the frustration I'm dealing with right now.
Anyway, thanks for sticking with me this long. Hugs to anybody who has some sage advice <3
@AbsurdBook399 I don't have any advice, but... I do know how you feel.
I was diagnosed as a Type 2 last year--supposedly, but the original diagnosis was they couldn't tell whether I was type 1 or type 2. I had to have 2 toes on my right foot amputated and all this happened while my Mom was in the hospital fighting her own battle with cancer so she coudln't be there for me. She died on Oct. 17th, so I can never talk to her about it again.
I haven't experienced burnout for as long as you have but its there. I'm tired of maintaining this. I've divorced myself from the idea of enjoying food so I won't desire it and people won't look at me like I'm a horrible person for desiring basic nourishment. I don't like to eat in front of other people anymore. It doesn't help that the person I've had helping me for the past year has a brother who is diabetic and when she gets mad at him she takes it out on me. (Generation gap too, the lady is in her 70's and I'm only 36). Doctors and other medical professionals act like they hate me on sight and I really don't want to ever go back to one. If I had it my way, I wouldn't.
I wish there was a cure for this because I don't want to deal with it anymore.
@straightforwardPenny3127 it really sucks. **Hugs** and I'm sorry you've had to go thru this. But look on the bright side. Type 2 is usually curable with weight loss. I know if you love food as much as I do that that's not really a positive but at least there is hope. A lot of the T1s on the support groups have said they're having great luck with the ketogenic diet. I've looked into it myself and there seems to be some really delicious stuff, my grandmother's best friend and her daughter are on it and the daughter says she went from a size 16 to a size 6 in a year. And it supposedly let's you eat ALL THE BACON YOU WANT lol. If you'd like I can share recipies when I find stuff I like. Don't let the doctors get you down. They're all pricks no matter what your condition is. Just take it one day at a time, I guess. That's cliched advice but it's gotten me this far.
I've had chronic health issues my entire life, some diagnosed some undiagnosed.
I relate. There are times where besides just wanting a break desperately from my symptoms, I also want it from all the management too. Taking care of my physical health has probably been the biggest stressor on my mental health that I have had to deal with.
And then yes, all the things I think about in the past. All the tantrums when I was really little where I am now fairly confident it was related to my physical attacks. I was treated like I was lazy at times or just trying to get out of things, I think my trust in my pain tolerance is seriously screwed up because my condition does cause severe pain but no one had any clue and often I was told that it's not that bad or sometimes my symptoms weren't even believed. I should have had way more accomodations in school. Sometimes past things come up in conversations and all the sudden I get a realization of how my health issues were a factor back then.
How to cope? I think it is helpful to recognize these things. Try not to get stuck on them though. I really was quite focused and negative about them for a while, but I think it is a part of a grieving process where you can slowly become less negative about them and they come up less frequently. I also recognize that those who cared for me, my parents, long term doctors, etc. were trying their best. Yes, at times they made things worse for me, but it wasn't being done in a vindictive way and things were difficult for them to. It also helps knowing others have dealt with similar problems, I'm not alone in this. It also can't be changed now. It's fine to feel lots of negative things about it, but I also need to look at what I can do for myself in the future now knowing what I do know.
As for the burnout, I'm still working on that one. Not being so sick has helped, I hope you experience the same thing with thyroid treatments. Taking care of me is really hard sometimes and I give credit to myself for what I have done that way. Knowing that I do have some control over my conditions does help. Yes, some things are random, but I can use prophylactic treatments and limit some triggers. When attacks do happen I am not reliant on others all the time, I can take control for myself. When I was feeling quite low a listener also told me about Self-Compassion and Dr. Neff which I did find helpful at the time too. Here are some links for that:
http://self-compassion.org/category/exercises/
https://www.youtube.com/watch?v=IvtZBUSplr4
[ And sorry for those involved with a guided discussion on the same topic - I was really harsh about it, but I do think it had issues with how presented and I didn't get anything positive from it at the time ]
I hope others can give more suggestions, it's still a work in progress for myself!
@AbsurdBook399 im sorry you feel the drs have failed you :(
I can actually really relate to this. I am sorry you have suffered so much, but thank you for sharing this because it helps me remember that people do know what I am going through too
@AbsurdBook399
I can really really relate to this. I found out in my late teens that 2 of my conditions could have been seriously reduced if they had been picked up at the baby checks that happen at 6 weeks old but the Dr forgot to do that part of the check. As most of my stuff ramped up at puberty I was constantly told that it was growing pains or 'getting used to your new body'. I went from a massively active 10 year old to an almost bed ridden 12 year old before they worked out something was wrong with me (all it took was an xray) my parents had to push taking me to the hospital repeatedly and telling the drs that there was something wrong with me. The funniest part was being told that they were using me to try and get pain medication!
I am sort of weirdly lucky that I have a family member with almost exactly the same 3 conditions that I have who is older than me - she has been my biggest help teaching me what to ask for and the test they need to run and the things I should be doing when the drs told me nothing.
I was repeatedly told that it was impossible that I had Fibro due to my age by multiple drs even though we know now that it can start in childhood. Half of the Drs that I saw didnt even know what it was! (this was around 10 years ago)
I found that getting angry helped - it lit a fire under me to get things sorted out to get the help I needed to get that proof to wave in front of everyone to say 'see I tried my best but I couldn't do anymore than I did'
The worst thing is knowing that some guy 30 years ago could have prevented a hell of a lot of this by doing a 2 minute check that every single baby is supposed to receive.