what is real

“…what this looks like is a bunch of pings and dings and myofascial issues causing your symptoms…”

I felt my eyes starting to well up.  I was perched on a chair, in considerable pain, in this new specialist’s exam room, this new doctor that I’ve been trying to get in to see for over a week, that Momma Ape moved heaven and earth to get me an appointment with first thing Monday morning, and he was actually telling me that this life-changing, near-constant pain I was in was just a bunch of ‘pings and dings.’ He said I had good muscle strength in my arms. He said he thought my sleep problems were due to depression. In short, he basically sat there and told me that he wasn’t taking me seriously at all.

I stopped him. Barely holding it together, I tried to explain that what he was describing as a bunch of pings and dings had completely changed my life. How I had been in near-constant pain since October. How nothing had worked to abate it until I got the nerve ablation three months ago. How I was still unable to do any of the things I used to do: swim, play guitar, sit in class, drive a stick shift. How I had to drop classes. How I wasn’t able to work.

He didn’t seem impressed. He ordered a series of nerve tests, MRIs, and a referral to a psychiatrist who could work with him to try to manage my pain and my sleep issues.

So not only am I not being taken seriously, but now I have to schedule and find a way to get to three more appointments before anything else can be done for me. He gave me no new medication. His manner seemed to imply that not only did he not believe me when I tried to explain the severity of my pain, but that even my choice to switch doctors was suspect, as though he inferred I was just shopping for more pain medication. His recommendation to see the psychiatrist only added to that impression.

It all seems so reasonable, typed out on this screen, more tests if my current treatments aren’t helping, bringing in an expert on anxiety and depression to contribute to the handling of my sleep issues. But the look on his face, unruffled, emotionless, gave the impression that he had stopped listening me five minutes into the hour-long discussion and examination. And as the hour wore on, I became less and less able to think clearly, to advocate for myself coherently. I’m so fragile, physically, emotionally. Doctors don’t seem to realize that what to them is just an appointment is to the patient their whole and only reality. He gets to walk out of that room and forget about me. But I don’t.

Was there any more I could have said to him to elicit some recognition of the pain and suffering I had endured for all these months? As I was driving home, all of the things I wanted to tell him but didn’t think of in the moment flooded back into my head. Good arm strength? Compared to who? Compared to someone who doesn’t swim or lift weights? Who didn’t work for four years as a veterinary assistant, lifting and restraining dogs weighing fifty pounds or more? Why didn’t I say I couldn’t go out at night any more? Why didn’t I mention that I lost twenty-five pounds by the time I had the ablation procedure and hadn’t been able to gain even half of it back? That I had been going to massage therapy and physical therapy for months and barely been able to move the needle on fixing what was wrong with me? Why didn’t I explain how much energy it was costing me just to sit in that exam room while he pulled and prodded at me, to remain calm, to stem the flood of tears that threatened to overtake me when he belittled my experience in that detached, clinical tone of his?

And all of the doubting voices in my head, that I had finally managed to muffle after beating them back for so many months, became a roar. This is all in your head. You’re making a big deal out of nothing. You haven’t even tried to go back and do normal things. He’s right not to take you seriously. You’ve been fooling yourself this whole time, making yourself and those around you believe you have a real disability even though you don’t.

Oh god, no, please. Have I gone through all of this for nothing? The shots, the car, the toe-curling injections and massages, all for a few pings and dings? I was filled with a despair I haven’t felt since before the nerve ablation. By the time I got home, I was sobbing so hard I could barely see. What have I done?

Was there anything I could have said? I’m a woman; a petite, attractive woman, at that. I suspect that no matter what I said to him in that room, as I swallowed my tears and forced myself, barely, to keep my voice from shaking, trying not to appear hysterical, trying not to come across as a drug-seeking junkie, that this doctor was not going to take me seriously, was not going to show me sympathy, and was not going to be able to make any real difference in what was going on with me.

I had hoped – taken in once again by that cruel mirage that hope is – that I would finally be able to make some progress towards having this injury really and truly dealt with. But he implied that he didn’t even think the problem was even necessarily in my shoulder[s]. He ordered MRIs that he didn’t expect would show him anything. He ordered nerve conduction tests in my upper and forearms, suspecting carpal tunnel.

I’m overwhelmed by the feeling that I have just made my situation worse, rather than better. Depressed? Of course I’m depressed, you asshole, let me stick an ice pick under your shoulder blade and leave it there for eight months and counting and tell me how that affects your mood from day to day.  Tell me, how does that make you feel?

How dare he imply that I am exaggerating? How dare he insinuate that I am not feeling the muscle weakness that I know is there, that my physical therapists have made so abundantly clear to me? How dare he suggest that the reason I can’t sleep is more due to my psychological state than my physical one? I was sleeping just fine before this happened. My insomnia was quite well managed for over a year with the minimum prescribed dose of a non-habit-forming medication.  But I couldn’t possibly be having trouble sleeping because I’m unable to maintain a pain-free sleeping position, could I?  Why would I think such a thing?

I don’t want to go down all of these diagnostic garden paths just to prove him wrong. I can’t bear the thought of long and painful nerve conduction tests on both arms, followed by a diagnosis of carpal tunnel, and getting sent on my way with a wrist brace and a pat on the head. Just what I need, more tests showing that there is nothing wrong with me. I don’t think I can take it.

This is real; too real; I would have set it aside long ago if it weren’t. I couldn’t possibly invent this horrific ordeal that has taken away so much of my life, swimming, music, work, social life, possibly even my career. I feel like I’m going crazy. It’s not like I haven’t tried to go back and do the things I used to do; I’ve got the resulting days of mind-numbing pain and fatigue to prove it.

I want to shake that doctor until his eyes roll back in his head. Please hear me! Why won’t you hear what I’m trying to tell you? Please, I want so badly to be taken seriously, for someone to treat this with the urgency that has me typing this post, the screen blurred through the tears that are still streaming down my face, my shoulders heaving from the sobs I can’t control.

I know there is something gone terribly, horribly wrong in my right shoulder, and now my left shoulder is starting down that same road and I’m scared and I’m exhausted from the effort it takes to look normal on the outside and I don’t know what else to do. I want to call him back and scream at him for making me feel this way. And I can’t. I know it will make things worse.

I have to go and set up these new tests and appointments and drag myself out to them and suffer through more pain and more sleepless nights for what I fear will be no good reason at all. I’ve lost the ready acceptance of medical advice I used to have before this happened, and with it, the willingness to subject myself to batteries of tests that may or may not show anything.

But there’s nothing else I can do. I just have to keep doing what I’m told, for all the good that’s done me so far, trying not to rethink everything I’ve done, everything I’ve been through, fighting against the fear and doubt that have now overtaken me. I feel small, helpless, as powerless as a prisoner in a mental ward, my screams and cries dismissed as ravings of a mind unhinged, unable to advocate for myself, unable to get anyone to believe me when I tell them that my pain is real and unrelenting.

Even though it is. And now it looks like it will continue, for god knows how much longer. And I don’t know how I can bear it. I’ve exhausted all of my coping mechanisms, good or bad, dangerous or indifferent. I’ve got nothing left in me that isn’t pain, physical pain, emotional pain, every kind of pain imaginable; I don’t have any bravery or strength remaining to deal with it, to try to disentangle myself from it, to try to act as if it’s not that bad. I used it up getting to that doctor’s appointment this morning. I didn’t know I was going to need so much for afterwards; I didn’t leave any in reserve.

And now I’m too distraught to do anything else. I just have to cross my fingers and pray that my new, unbelieving doctor will at least refill the prescription for the medication I’m currently taking to manage my pain so I can get through the next two weeks before I see him again.  Because if I have to stop taking it, I don’t know what will happen.  My imagination has failed to compete with reality for going on nine months now.  I daren’t challenge it again.  Better if I don’t know what’s going to happen next.

About C. M. Condo

I am a late-diagnosed, high-functioning autistic living with chronic pain. I started this blog in March of 2014 as a way to try to process what was happening to me. It is my hope that by sharing it with you, we can both gain something, or at least learn something, from my experience.
This entry was posted in Aspect I and tagged , , , , , , , . Bookmark the permalink.

2 Responses to what is real

  1. E says:

    Keep advocating for yourself and if there is something more serious causing all of this, it will show itself eventually.In my case, I started to experience extreme bouts of shoulder pain and fatigue at the age of 16. After going to doctors for six years, after being told I was everything from anxious to hypersensitive, I was diagnosed with an autoimmune liver disease. Unfortunately a lot of diseases don’t manifest themselves in blood tests early on.

    Liked by 1 person

  2. onshegoes says:

    I’m so sorry you’re going through this. I know that despair when the people who are meant to know what’s wrong and make it better have no idea what’s going on. Even more horrible is when you can look them in the eye and know they don’t even believe you. I changed Drs and although the new one is now not sure what to diagnose me with, she’s going to continue looking for the right combination of meds etc to help. I really hope you get someone who believes you and can help you soon. Sending love and hugs x

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.