The Ignorings of Chronic Illness Effect on Psychology

I have had chronic since I was born in 1985. I am almost thirty now. As a child, I was in and out of hospitals all the time, for gradual liver failure, and my parents were constantly given contradictory information on how to deal with it. When I was 12, my liver crashed completely, and I was in a near-death coma for a month during which I was transplanted. When I awoke, traumatized and shaken, I was in the hospital for another month, during which not one person came to talk to me about how I had experienced it.

A few years later I needed a kidney transplant, which was done and my trauma addressed very poorly yet again. Added to that my built-up hatred of medicine for being treated as a doctor's toy in childhood, that did not go well either. I had a few moderately good years in late high school and early college, but then I started suffering from another series of bodily pain, and more procedures. I had finally had enough, and I wanted this time to die. A few years ago, I rejected all medication in a final attempt to send a message that the psychological damage of being sick cannot be ignored.

I tried calling the suicide hotline a few times, but every time I explained where my pain and confusion came from, the person on the other end just seemed frustrated with me, and gave me the common but unhelpful answer that "I'm sure they were just doing what they thought was best to keep you alive". But being kept alive by medicine and procedures has always been exponentially more traumatic than leaving me feeling saved at all. I have come out feeling much more like molested.

Again I nearly did die, but on the last day my parents came to me and asked if I wanted to try and turn things around. I said I could try, and so I began a long, hard process of dialysis and listing for another kidney transplant. My family has now paid attention to the trauma done, and I am working closely with my Dad to recover my sanity. The doctors, however, have never learned, and they still believe that an ill person's psychological health is no issue.

They encouraged me dying, rather than seeing it as a cry for help and reform than it really was. I've tried to become more tolerant of taking medicines in preparation for one last transplant, but death keeps seeming a far better option than continuing to last out dialysis, which is re-traumatizing me every time. I'm really not sure how much longer I can keep it up. I feel on the edge of another mental breakdown every day, but I try to fight on, because if I break down now, I might never be sane again. It's very scary.

My parents and I are on our own trying to figure this out. Rather than say something like, "we're sorry you felt you had no way out. We'll try and help you, but we need some proof, a trial period to show that you can at least handle medication, at the same time", the doctors and ethicists who encouraged my suicide have fled and refused to talk to us ever again, cowering from consequences while I cannot. It's only increased my hatred of them.

To try and build a non-medical identity, I have started volunteering at a nature center, taking online classes, writing, planting, and painting. I do have a pet who is helping me every day, just by being my best friend. A black American Shorthair male cat named Blackberry. Two years ago, however, Blackberry's sister Blueberry, who I was just as close to, died of sudden seizures, and my family too quickly got another pet - a bull-terrier dog who harasses Blackberry. We had to separate the upstairs with a baby gate, and Blackberry now lives up there, so it's much harder to spend time with him each day, except for walks which he follows me on. After a year and a half, this dog has still not responded to training at all, but my Dad refuses to let us find another home for him.

Sometimes I feel completely at fault, that I did in fact push things to this point, but I also many times feel I was screaming for help and everyone just said in response "you just have to do it" (meaning take medicines, go through painful procedures, endure the humiliation of being small and weak with no stamina and in every way inferior to peers, and hospitalizations often with no psychological preparation). It's so very hard, and I want to get to a point where I can just get a little distance from all that and really start to recover.

Nate,

Needless to say, you have had a rough go of it.

I suggest therapy. I have been in therapy for trauma [15 years of childhood abuse], for 4 years now. I am 54. It has helped tremendously.

Be proactive, if after 3 visits you don't connect with the therapist, and this can happen, tell that person and find another.

You need validation for what you went through. For the emotional neglect from the clinical staff, who most likely did not know any better, none the less it still had a huge impact on you.

This long term experience can not be fixed or overcome in a short period of time. The medications will help. However, I have experienced that talking to someone that understands neglect, trauma etc.. helps peal back the layers of hurt, helps us deal and process them, so we can lay them to rest. Move on with our lives.

I wish you peace. Keep posting here, we support and listen the best we can.
Trina

They encouraged me dying

How? I have no love for the medical profession, but this bit surprised me.

I can, in a very small way, relate to how you feel. My medical history is nothing like as extensive as yours, but I was chronically ill with Crohn's disease for some years. In that time, I had a few serious traumas, not all Crohn's-related, but some definitely were. I felt like a cog in a bureaucratic machine (the NHS), and felt rage about my former doctors, their sheer indifference, and how they had let my disease slide. The system is so utterly impersonal: you never really get to know anyone, or have anyone feel like they are looking out for you. At least I was an adult when I was going through that crap; I can't imagine what it must be like for a child.

I can also relate to a lack of identity. Mine I think was caused by a bad childhood, which led to a bad adoloscence, and then a bad adulthood. I had zero confidence in my abilities to find a job I could do long-term, a boyfriend, etc., and none of those things came about. Instead of learning to live my own life, I remained a child in my parents' home until the age of 40 (this year, basically). I don't know how well you get on with your parents, but I'm sensing some resentment at your dad's refusal to re-home the dog. If so, it's understandable, but it's keeping you trapped in a child-like state. I would give some consideration to moving out and living on your own: I hope it's a possibility for you.

PS: And yeah, seek a therapist.

NiceCupOfTea,



I'd like to share something with you (and you all) since you mentioned relating to a lack of identity and a traumatic history. This is a page I wrote about how I experienced the month-long coma at twelve years old, and what coming out of it was like:


I fell that night into a very deep sleep. All of my corporeal senses came to an end, and I entered into a nightmare where I wasn’t sure if I was alive or dead, but I had some feeling. I felt pain with no idea of where it was coming from. I had no sense of what time was passing, where I was, or who was around me. Even what was around me, although I had one dream that I was in a gigantic cubic tomb. My tomb. I felt warm and safe there. At other times I came close to remembering that I was in a hospital, and in that place I felt terrible, overwhelming fear. My body has never been my own in that place, it’s always been a toy for the doctors’ sick pleasure. I must escape that, if I am ever to feel comfortable in my own skin. Now it felt as if I would never escape. I was a machine, kept in existence only by a drugging, pumping, gassing, and molestation that I couldn’t fight at all. I wanted to fight, to either fight or die. I was stuck in an endless nightmare, with only flashes of good dreams and extremely long blackness in between. I existed only to feel pain, never to live.

When I finally opened my eyes again, after having been in a drug-induced coma for a month long, this is what I felt:I cannot move at all. There are tubes attached to my arms and legs. Half of the time I cannot feel my body, the other half of the time it is in terrible pain. I have no clothes on, or, some of the time, a horribly itchy gown. And a diaper. The diaper itches too. Why? I grew out of diapers ten years ago.

My bowels are not under my control. My limbs are not under my control. My own mouth is not even under my control. I want to scream, but I can barely squeak. I don’t even feel that I am one body – I am cut into pieces and lay lame on a painful bed. Body parts are separated by bands of complete numbness. I can’t even tell if I am bleeding or not.

I cannot change position on my own at all. The faceless nurses come to feed my lines, to water me, and to change me. It hurts every time. I don’t want to eat through a machine. I don’t want to be soiling the only clothes I have on. I want the medical persons to stop raping me, but I can’t manage enough words to stop them, or even ask them. Do I even remember the words I learned over twelve years? I speak like a two-year-old. Did I de-age and in fact become two years old again? Will I have to relearn to walk? Relearn all of my motor skills? I can’t tell at all.

I am too weak to eat, but I am thirsty. Very thirsty. My throat hurts. I am given occasional sips of water, either hours or days in between. I have no sense of time other than it lasts so very long. I want to move! I want to fight these tubes that are holding me in place! Oh please, if I am bleeding, let me bleed to death!
It is an eternity until I am aware of my surroundings. My father, mother, and grandmother come to my side. They want to help me, but I can still barely move. I ask for my favorite foods and drinks, but I am told I cannot have any. I must eat and drink through a machine now, except in very small amounts. Those amounts are never enough.

“Your life is now very different,” my parents say. “You will have to be watched very carefully, much more than before. Back then, when you didn’t take your medicines, you got a little bit sick. If you skip your medicines now, you will die.” I don’t understand – have I not already died? I listen to all the ways my existence has become more restricting, more controlled.

When I am alert enough that I can hold a conversation again, the doctors say, “We gave you a liver transplant. A miracle. You should be grateful.” I cling to my parents, still so immobile. Still wanting to scream and I can only cry.

Post Edited (nategerdney) : 5/15/2015 5:58:03 PM (GMT-6)

I HEAR YA. glad you found a good therapist. now to do the work. my experience with hospitals is very similar. not recognizing, nor worse, even validating the patient, especially as they are aware of our history. keep strong.

yes to karen. i wanted to say something similar.- these experiences be it have happened and are traumatic, but, and i say this with compassion, they are negating experiences that we should not allow to negate us. there is no reason to share my experiences, i am not dead. (yet) i still kick and scream. i also am now advocating in the public mental health system for better compliance. healing thoughts.

that they follow set standards and values towards patients. that patients can seek advocacy regarding treatment protocols. i do not need to be careful with the term. not all values and targets are met, thus improvements can be made. this is solely in the public mental health system in my area. i hope this will suffice.

have you thought about doing some advocacy in this area? campaigning about these issues? i am just happy i am alive. like i said in the past, i have been through similar crap. but surgeons operate and keep us alive. this i am eternally grateful for. nurses, docs, they are pushed. near death is bs. if ya dead, your dead, toe tag, if not, your alive. i think myself lucky that i am in a country where we have hospitals, let alone countries and areas that are lucky to have a nurse. so i am being blunt.

THE HAPPY TURTLE said...
have you thought about doing some advocacy in this area? campaigning about these issues? i am just happy i am alive. like i said in the past, i have been through similar crap. but surgeons operate and keep us alive. this i am eternally grateful for. nurses, docs, they are pushed. near death is bs. if ya dead, your dead, toe tag, if not, your alive. i think myself lucky that i am in a country where we have hospitals, let alone countries and areas that are lucky to have a nurse. so i am being blunt.

Some people can pretend that bad stuff never happened to them, or that it didn't matter if it did, but not everybody has that ability.

There are things worse than death, imo.

This thread is becoming HOT.

I would like to ask posters to respect others views, opinions and experiences. Please use "I" statements when posting about your experiences.

I will lock this thread if it goes where I think it is heading.

I am asking members to be kind and understanding of each other. There is enough abuse in the world, we do not need to encounter it here on the forum.

Thank you.
Peace to All
Trina

HT you are not the issue....

NCOT

I of all people realize the change in chemical balance in the brain from trauma.

This is a forum of support.

We all have our opinions. Everyone is welcome to state them regarding a subject. In a positive unhurtful way.

To say things as 'dark' as 'there are worse things than death' is inflametory. It can lead a person in deep depression to self-harm actions. I understand your situation, and it is an understatement to say it is rough;to say the least.

This forum is held with a positive and hopeful atmosphere. We do this mindfully and with a purpose. Other forums are not our concern and can allow deep dark venting if they want. "Depression" is not the place for this.

We appreciate your input as long as you come to be lifted in community support. Give positive feed back to others. Perhaps you will in time find the validation you are looking for.

Peace
Trina