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I'm not sure when I understood fear for the first time. I remember being 5 years old and nearly being lured to molestation, but I wasn't scared. I became aware at that point of the evil around that will attempt, at any turn, to permeate your life.

Fear itself, though, didn't really earn my acknowledgment until I was hospitalized and told that I would be losing part of my body. Everything in my world turned upside down. I was faced with what would only be the beginning of a never ending medical nightmare.

Details don't matter here...and I wouldn't subject any of you to the gore of my ordeal anyway...I can barely stand to remember it myself.

The point buried under all that introduction is this, Fear is powerful and sneaky. You may think you have it under control but it's there lurking and doing other damage to your psyche.

After 8 years of medical bullshit and harsh treatments, I fear going to the doctor. Who would have thought?

My condition is termed refractory, which is a fancy word for resistant to treatment. It doesn't matter if I keep my primary condition under control, the secondary condition is just determined to stay alive.

This leads to me burning out on doctors and being extremely critical of their methods, and eventually I stop going because I just can't face yet another office visit where I will hear not so good news.

My recent hiatus from medical care was due to several deaths in the family, the holidays and moving. Right now, that bastard Fear is working his bad mojo in my head, drumming up memories of past operations and hospitalizations...making me just want to hide.

It's the proverbial vicious cycle.

It's a tough nut to crack too, even though I'm aware of the psychological reasons for my behavior, and even though I know I should resume my care, I can't make myself pick up that phone. I don't want to see the look of disappointment on my doctor's face, though he'll try to hide it, I'll still see it flash through in his eyes.

There's no real point to this blog.

Just relating a condition that might be familiar to some, and to say that even though I am filled with fear at what will likely happen, I will conquer that fear yet again, and I hope that those who avoid medical care for the same reason, will think twice and make the call to your physician soon.

Originally posted to One Thin Paradigm on Tue Jan 29, 2013 at 11:29 AM PST.

Also republished by Community Spotlight.

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Comment Preferences

  •  Tip Jar (37+ / 0-)

    You take the blue pill, the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill, you stay in Wonderland, and I show you how deep the rabbit hole goes. -Morpheus/The Matrix

    by Kaos on Tue Jan 29, 2013 at 11:29:23 AM PST

  •  It sounds to me (24+ / 0-)

    like your fear is worse than any condition you might have.  I know how it is to burn out on doctors (I've been in chemotherapy for 18 years.  Yeah, really.)  This is how I handled the burnout.

    I told my doctor about it.  I told him that I was going to be a pain in the ass and I was going to question him.  He was happy.  The people who make him crazy, he said, are the ones who both avoid and are afraid to speak.

    Now, not all doctors are like this. But if you're honest, the outcome of your meeting is likely to be much better than you imagine.  If it isn't, you have to remind yourself that you hire the doctor, not the other way around.  You are not there to please her.

    And the best benefit: those pains and fears that ricochet around in your head at night will subside when you know what you're dealing with.  And best wishes, by the way, that what you learn is that everything's okay.

    "I speak the truth, not as much as I would, but as much as I dare, and I dare a little the more, as I grow older." --Montaigne

    by DrLori on Tue Jan 29, 2013 at 11:47:41 AM PST

    •  What wonderful true advice! Listen to DrLori, Kaos (14+ / 0-)

      the greatest fear comes from doubt, from the unknown. You have to regain control.

      I have never figured out why, when we quote FDR's First Inaugural Address, we always stop after the first phrase when what follows is what is important:

      "The only thing we have to fear is fear it'self

      - nameless, unreasoning, unjustified, terror which paralyzes needed efforts to convert retreat into advance."

      Only in the darkness can you see the stars - Martin Luther King, Jr

      by Susan Grigsby on Tue Jan 29, 2013 at 03:15:35 PM PST

      [ Parent ]

      •  Thank you =) (3+ / 0-)
        Recommended by:
        liz dexic, SilentBrook, Susan from 29

        I do know that treatment is not a luxury for me. I am aware of what's going on in my body and why, and I do know that I will have to go back to my doctor soon.

        I'm the biggest advocate around my community, of questioning medical personnel. I don't let them off the hook if there's something I'm not happy about in the way they're treating me...or if I don't know what is going on...I ask questions and yes, I am a pain in the ass to them, but it's MY life and body. I have that right.

        I also have the right to fire that doctor, as he has the same right to release me as his patient.

        These are things that most people don't understand. They blindly go to the doctor and remain unhappy with their care.

        I'm ranting here...and will stop now, but thank you for reading.

        You take the blue pill, the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill, you stay in Wonderland, and I show you how deep the rabbit hole goes. -Morpheus/The Matrix

        by Kaos on Wed Jan 30, 2013 at 08:10:36 AM PST

        [ Parent ]

    •  I wonder if along with (10+ / 0-)

      medical treatments does health insurance or do many hospitals support counseling/emotional support for patients who have to go through the rigors that you all have? Going through such rigors would seem to me to make one a candidate for genuine PTS counseling. I am not a professional and have been fortunate not to have had a major medical procedure (yet), but I have been treated for old PTS and other recent psychological challenges due to certain life changes I went through. I did sit with a friend recently who saw her husband through cancer treatments that ended with his death about two months ago, and while hospital staff and doctors probably did what they could under whatever their conditions (overwork and their own stress loads) allowed, I doubt that she got the individual support she needed from professionals. I say this because as a group, she, I and other friends went to meditation sessions and other spiritual activities, while she had to seek various options (low cost ones) to try to adapt under the grief. If such support is not provided under the health care providers' plan or approach, are there local care-givers who are organized and visible who offer services without putting those in need through too much hoop-jumping? When I did need some good talk therapy to get through my last (and most serious) bout with meltdown, I was fortunate to come across someone who allowed me to pay what I could afford at the time, and whenever the funds were available. It helped me turn a corner and get to where I could make some very positive moves, including getting needed medical advice that I'd been avoiding for years prior to the emotional shutdown.

      I discover myself on the verge of a usual mistake. ― Walt Whitman, Song of Myself

      by dannyboy1 on Tue Jan 29, 2013 at 06:54:01 PM PST

      [ Parent ]

      •  Seriously, Dannyboy is on to something here. (5+ / 0-)

        Medical traumas can cause Post Traumatic Stress, and some do go on to develop full blown PTSD from it.

        Feeling helpless, completely pole-axed and uncertain about your future [which feeds into that helplessness] are all potent factors that can lead to this condition. It's powerful.

        Here is a checklist for you to look at to help you figure out if this is an issue you might want to explore.

        The Doctor's office or the Hospital, or a resurgence in your medical conditions can all be triggers.

        The date of your diagnosis, your surgeries, etc., can also be what are called anniversaries.

        The stress can be so great from this, that it can exacerbate other medical conditions and even cause new ones over time. YICK!

        •  Thank you for the link, GreenMother (3+ / 0-)
          Recommended by:
          GreenMother, liz dexic, SilentBrook

          I try to keep a list of resources to share in my talks with vets (and others in another group I'm active with). Gentle talk is a good way to get an opening for sharing more information and encourage sufferers to seek the other help they might need (I always hope).

          I discover myself on the verge of a usual mistake. ― Walt Whitman, Song of Myself

          by dannyboy1 on Wed Jan 30, 2013 at 05:20:56 AM PST

          [ Parent ]

          •  Just having a name for something sometimes is (3+ / 0-)
            Recommended by:
            dannyboy1, liz dexic, SilentBrook

            a big help.

            And you know sometimes people get sick of being poked and prodded, especially if the poking and prodding isn't productive.

            Medical personnel want to help, but sometimes forget that everyone needs a break. Being sick for that long --it's a job, and if you have a job, at some point you need a vacation.

            It might not be sound medical advice, but it seems to be more about emotional needs rather than the physical.

        •  Thank you =) (4+ / 0-)
          Recommended by:
          dannyboy1, SilentBrook, annan, GreenMother

          I sought treatment when I found myself laying on my bed, looking out the window for days, wondering where the nearest mental hospital was.

          PTSD is exactly what has grown inside me from all this medical fun. When I am asked to visit someone in the hospital now, I oblige, but it's difficult. The smells, the sight of the's all too much.

          You take the blue pill, the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill, you stay in Wonderland, and I show you how deep the rabbit hole goes. -Morpheus/The Matrix

          by Kaos on Wed Jan 30, 2013 at 08:19:22 AM PST

          [ Parent ]

          •  Learning to meditate helps tremendously (1+ / 0-)
            Recommended by:

            Keeping a journal is indispensable for discovering, naming and then reminding one's self of their triggers and anniversaries.

            If this is what you believe to be going on, these are two approaches I highly recommend.

            There are supplements that are good for calming down, but given your medical issues, I have no idea whether it would be advisable or not, to try them.

            Most of all, you need an advocate when you go to the doctor or hospital. One person you can count on to stand up for you, hold your hand before, during and after.

            The problem with PTSD from issues like this, is that one can avoid some situations that might trigger an episode/reaction.

            But what are you going to do with this? Not get sick? Not break anything? Ever? So it can be a bit tricky in both honoring your emotional needs, and still caring for yourself with proper medical treatment.

            You can just stop going to the doctor, but eventually something is going to happen and one way or another you will end up in that office.

            It would be golden if you can find a doctor who is understanding about this, which is easier said than done.

            I have heard  good things about cognitive therapy too, for this sort of thing. You can read about it at this VA page:

            Acupuncture is an alternative health care model used to treat for stress and anxiety as well. I have also heard good things about that.

            •  Sorry I missed this, GreenMother, (1+ / 0-)
              Recommended by:

              only saw this early this a.m. Oddly, yesterday morning at an "all staff" meeting here at work, we heard again about the financial hits we'd take as budget cuts come down. No one knows anything in particular, so it's wait, watch and worry for lots of folks. I rarely speak at these meetings but perhaps in good part because of sharing here and hearing others, I raised my hand and let folks know that writing is something they can do to feel more empowered when the larger political/economic system machinations seem to close in around us. I taught writing for almost 18 years at community colleges and universities, mostly moonlighting, always part-time, and I believed then and still do that writing (and the arts) are viable, therapeutic tools for all kinds of sufferers. Thank you.

              I discover myself on the verge of a usual mistake. ― Walt Whitman, Song of Myself

              by dannyboy1 on Thu Jan 31, 2013 at 04:38:48 AM PST

              [ Parent ]

      •  Mental Health (3+ / 0-)
        Recommended by:
        dannyboy1, liz dexic, SilentBrook

        is grossly ignored in this country. No one wants to think of themselves as damaged or needing help.

        I've been going through this for a long time and the ONE big lesson I've learned is, pride goeth before the asking for help. You have to rely on the community around you, whether you want to or not.

        Your mind will let all your fears loose at the least appropriate moment, if you let those fears rumble around in your head without treatment.

        I am not afraid to tell anyone that I am living with the current conditions, PTSD, Anxiety, Depression and Artistic Insanity (This one is not covered in any ICD9 though.)

        There are resources out there to help people understand why they might be feeling disconnected or why they might want to shut down, but the stigma of seeking out help is still far too great.

        Thanks for reading dannyboy =)

        You take the blue pill, the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill, you stay in Wonderland, and I show you how deep the rabbit hole goes. -Morpheus/The Matrix

        by Kaos on Wed Jan 30, 2013 at 08:16:27 AM PST

        [ Parent ]

        •  Yes, Kaos, (2+ / 0-)
          Recommended by:
          liz dexic, SilentBrook

          We do heal. I'm not alone in this journey either, both here and in my community. When the temptation to isolate gets great, I usually seek someone who might need a hand. I've found it's not about making me just feel better anymore, it's about actually healing something bigger, like some community wound. I don't know if that's literally so, but it feels that way sometimes.

          I discover myself on the verge of a usual mistake. ― Walt Whitman, Song of Myself

          by dannyboy1 on Wed Jan 30, 2013 at 08:31:01 AM PST

          [ Parent ]

  •  I know that fear (13+ / 0-)

    or at least a close cousin of it.

    I wish I had good advice for you.  :(

    * offers hug instead? *

    •  Thank you very much (0+ / 0-)

      You take the blue pill, the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill, you stay in Wonderland, and I show you how deep the rabbit hole goes. -Morpheus/The Matrix

      by Kaos on Wed Jan 30, 2013 at 08:20:25 AM PST

      [ Parent ]

  •  I have a lot of regret rooted in fear. Rejection (11+ / 0-)

    Acceptance, Fear that I won't be loved.  These days, i feel like I wasted so much energy on fear of what other people thought.  Now I just don't care.  Accept me as I am, or not.  I find more people accept me with this attitude than my fearful persona.  

    As for doctors, I'm no longer afraid to ask the hard questions or to admit my fear.  They're much more accommodating, and those that are not I leave and go to another doctor.  Did that with a dentist, who seemed put out by my reactions.  Fuck him, he was ultimately a bad dentist. It's not my job to make him feel good about how he's treating me, it's his job to make me feel comfortable.  I have a much better dentist now.

    The only thing we have to fear is fear itself - FDR. Obama Nation. -6.13 -6.15

    by ecostar on Tue Jan 29, 2013 at 04:31:53 PM PST

    •  I have a friend with the same attitude, ecostar. (2+ / 0-)
      Recommended by:
      liz dexic, SilentBrook

      Wish I had more of it.

      He was declared terminal (twice) with esophageal cancer, and has survived both declarations for 10 years, which is a virtual miracle.  He's been through every treatment - surgery, radiation, chemo and come through it every time.

      Because they thought he was going to die quickly, they didn't attach his stomach the way they would have had they thought he had a chance to survive long term, and he suffers a lot of pain as a result.

      His meds cause myriad side effects, including memory loss, which has caused him to OD more than once (I personally have taken him to the ER twice, virtually comatose each time).

      He finally had to go to an assisted living center, for no other reason than he needed someone to give him his medications on schedule.

      He doesn't hesitate to tell his doctors that he insists they relieve his pain, no matter what it takes.  He's fond of reminding me this is the 21st century, and he put up with all the crap he was going to in the 20th.

      I'll have what he's having, as they say in the movies.

      And who the hell is Grover Norquist???

      by ZedMont on Wed Jan 30, 2013 at 08:22:38 AM PST

      [ Parent ]

    •  Thanks =) (3+ / 0-)
      Recommended by:
      liz dexic, footNmouth, SilentBrook

      I fired a doctor after he refused to refill my diabetic test strip prescription until I came to see him.

      This was his method for ensuring patients returned to him for treatment, however, I found the withholding of necessary supplies to be unethical and I let it be known.

      People need to understand that Yes, doctors have endured incredible amounts of schooling and practice but that only gives them the right to diagnose, prescribe and treat. It does not give them the right to dictate.

      You take the blue pill, the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill, you stay in Wonderland, and I show you how deep the rabbit hole goes. -Morpheus/The Matrix

      by Kaos on Wed Jan 30, 2013 at 08:24:15 AM PST

      [ Parent ]

  •  Hey Kaos, great diary! (4+ / 0-)

    As to you particular medical concern, how about breaking it down a bit further? Your average doctor's office is basically mainstream-oriented - they're geared towards dealing with "normals", they feel that their style is normal, they're not usually concerned about the patient/user experience.

    The system is not designed to recognize that some individuals have additional needs. Consider yourself the equivalent of a vegan at a barbecue - the hosts are happily grilling up a bunch of flesh, but their core commitment is to create a pleasant experience for their guests. Maybe they didn't plan for a vegan at their party, but they got one, and now it's up to you to negotiate with them a way for you to enjoy this feast.

    There are any number of reasons why you're "refractory", eg
    -negative response to authority roles.
    -negative response to being confined in a room with a stranger.
    -negative response to strange males/females in authority positions.
    -negative response to particular aspects of the standard doctor's office experience.
    -and so on.

    You clearly feel a need/obligation to go to the doctor's, and at the same time a strong resistance to doing so. My advice is to focus on why you feel it's important to go to the doctor's. If there's a strong enough reason for you to do so, then visualize the circumstances that would make your visit a tolerable/acceptable one. Are there things that you'd like to avoid, or that you feel uncomfortable with? Identify those things, and negotiate your way past them. Maybe you want a buddy. Maybe you want a commitment that things will be done in a certain way. When you go to the doctors, you're a playing client just like you are when you buy a coffee. If you don't think you'll get the service or treatment you want, you can go somewhere else.

    I definitely sympathize, because I have a condition that complicates my medical experiences. I've found ways to work around it, but I don't expect respect from the medical community when I am in their care, and it's been up to me to find ways to manage it: Viscerophobia...

    •  Thank you =) (2+ / 0-)
      Recommended by:
      liz dexic, hooper

      I will be going to the doctor, there is no doubt and I know the course of treatment that will occur.

      Refractory, in my case, refers to the condition in my body that will not heal, no matter what they have tried. Superbugs are real, my friends, and they strike hard.

      Once this period of psychological resistance is over, I'll dive headlong back into treatment, but it's like someone said a few posts back...after being on this "job" for so many years, vacations are necessary with more frequency.

      I'm not one to run from fear, not usually, and in fact I'm only hiding away from it at this moment.

      Thanks again, for reading =)

      You take the blue pill, the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill, you stay in Wonderland, and I show you how deep the rabbit hole goes. -Morpheus/The Matrix

      by Kaos on Wed Jan 30, 2013 at 08:31:08 AM PST

      [ Parent ]

  •  " There's no real point to this blog " (8+ / 0-)

    Ahhh , yes there is , This person needed to read what you just said

    My experience as a 5 year old was in the church we grew up in , they had a 20 foot crucifix with a 12 foot realistic jesus hanging on it at the front  , I begged my mother asking her to get everyone to please bring the tortured man down , she tried to explain it to my young mind , and that is when she informed me that we all die some day

    I remember being shocked and appalled , some how my mind already had a concept of a loving creator , and there is no way a loving creator could allow death to happen , this seems to have hard wired me instantly as a non conformist , it also made me recoil from this world

    Fear is the opposite of love , and the absence of love in this world can be stark , it is a challenge to give love when the  reality  of this world rips the fabric of your every day life in half thru sickness , pain and suffering

    I have been going to the doctor for 4 years now , I have lost everything and am penniless , I am hanging on by a thread with the graciousness of my family , it is almost like the doctors refuse to diagnose me with anything , because then I would officially be DISABLED , and qualify for relief

    I now know why jesus , buddha , mother teresa , gandhi all implore us to help the sick and poor , it is because understanding suffering does not come natural to the human mind , I have always been a compassionate person , but now that I know suffering , I see it all in a whole new way , there is nothing else that could bring me this understanding

    Thanx kos , I needed that

  •  Conversation is part of the cure... (2+ / 0-)
    Recommended by:
    bontemps2012, hooper

    For the fear, anyways.

    I think you did a good thing, posting here.

    Keep talking.  You might help some one else, as well as yourself.

    The only way to be defeated is to quit.  I'm sure you get to circling around the drain some days.  But not down yet.

    Stay 'up' as long as you can.  Find things that are worthwhile.  

    We're here for you!

    The Fail will continue until actual torches and pitchforks are set in motion. -

    by No one gets out alive on Wed Jan 30, 2013 at 11:07:17 AM PST

  •  Well done. (0+ / 0-)

    Real fear has it's own powers.

    I've been lucky to avoid the most of it.

    Artificial fears are what we talk about, mostly, here at dkos. The bxllshxt from propaganda.

    Being able to differentiate real fears from artificial paranoia -- in this environment that is step # 1.

    You remind me what's real.

    "Have you left no sense of decency, sir, at long last?" Army Attorney to Sen. McCarthy, 1954. "We have done nothing to be ashamed of. We have nothing to apologize for." NRA 12/14/2012.

    by bontemps2012 on Wed Jan 30, 2013 at 05:26:02 PM PST

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