My Chronic Pain Story: Denial, Anger, Bargaining, Depression, Acceptance…and more Anger?

I’m so angry right now I don’t know whether I want to scream or cry.

The anger seems to rise up in my throat as my hands shake and my heart races.  I am not the sort of person that experiences blinding rage very often so it’s almost terrifying to experience it now.  But what I’m feeling at the moment is more than just anger.  It’s the five stages of grief all at once.

I’ve discussed my chronic back pain at length in the past.  One thing I never metioned was how sometimes I get a shooting pain down my right leg that makes it go quite stiff, giving me a visible (and painful) limp.  I never mentioned it because it only happened once or twice a year.  But slowly, as the years have gone by, it became more and more frequent to the point where this January it began happening once or twice a week.  So although I had accepted my chronic back pain, I went through the five stages of grief once again as I mourned the possible loss of my mobility.  This time the depression stage was much shorter but the anger lasted almost twice as long as it had when I realized my back pain was only getting worse.

I was so angry that not only was my back pain still a problem but that I was also experiencing pain in my leg that limited my life even more.  While we as a society have made quite a bit of progress when it comes to physical disabilities we’re still not perfect and my occasional limping has made that painfully clear.  Not only did the pain make me angry, people’s reactions to me did as well.  It’s hard to go out to the mall and get stared at by almost everyone because you’re an otherwise physically normal young woman with an obvious limp.  It’s hard to go from nearly having to fight salespeople off in every store you enter to being left alone (and sometimes actively avoided) by everyone.  But I digress.

So why am I angry now?  I’ve gone through the five stages of grief for my back and my leg.  Well, two days ago I had an appointment with a physiatrist (physicians who “treat a wide variety of medical conditions affecting the brain, spinal cord, nerves, bones, joints, ligaments, muscles, and tendons“).  Instead of acting like all of the specialists I’ve seen to date (i.e. immediately dismissing me as “too young to be in pain without any obvious physical defects”) he took the time to examine me and ask me questions about my medical and family history.  And because of this physical examination, the questions he asked and the MRI I had done three years ago he was able to diagnose me within fifteen minutes.

Fifteen minutes.

I have been in constant pain for nearly five years.  I’ve seen specialist after specialist, sometimes waiting for up to a year to book an appointment that lasted ten minutes and ended with the specialist accusing me of lying or seeking drugs.  And the worst part?  At least half of those specialists should have come to the same conclusion as my physiatrist given my medical and family history.

Essentially I, like 10% of the population, have hypermobile joints.  I have naturally loose ligaments and so my joints extend beyond the normal range of motion.  For a lot of hypermobile people this isn’t really a problem.  However, in my case I seem to have extended my back too far and caused stress on a vertebra in my lower spine.  This caused the muscles in my lower back to tense up to compensate for the stress on this vertebra, which in turn caused the muscles in my upper back to tense up to compensate for that.  And as I had to give up the sports I loved due to the pain, the pain got worse as I lost core strength and my muscles had to work even harder to hold things together.  The stress seems to be worse on one side of the vertebra, which caused the intense shooting pain that runs down my right leg.

The cure for this?  Targeted physiotherapy.  The physiotherapy I had before, shortly after the pain started, only exacerbated my problems as the physiotherapist had me doing exercises that forced me to move my joints beyond the normal range of motion and put additional stress on them instead of stabilizing them.  Basically, I need to go see a physiotherapist with experience treating hypermobile people who will determine what exercises I should be doing on my own time and that’s it.  It won’t happen overnight and I’ll always need to do them, but the exercises should essentially cure me of my chronic pain.  And as I get older, my ligaments will naturally tighten up so my joints won’t be so prone to moving in ways they shouldn’t.

Which brings me back to the anger.  I’m feeling so many things right now: a weird combination of denial, acceptance, depression, despair, etc.  But the prevailing feeling is definitely anger.  I’m angry that for years doctors dismissed me because they couldn’t find an easy answer.  I’m angry that all they saw was a hysterical young woman instead of a patient experiencing pain.  Had they looked—actually looked at me instead of relying on a stereotype—maybe I would have had a diagnosis sooner.  Maybe I could have already been doing proper physiotherapy for months, years even.  Maybe I didn’t need to be in constant pain for so long.

I’m angry that I missed out on so many things because I was in pain.  It’s infuriating to think that I gave up things I loved like volleyball and swimming because of a treatable, easily diagnosable problem.  And it’s especially aggravating that I gave these up because of pain that could have been managed shortly after my symptoms began.  Every single doctor that bothered to examine me remarked upon how flexible I was despite the pain.  They didn’t think this was a clue, one that might lead them to conclude there was something wrong with my connective tissues.  No, they just took it as proof I was a drug and/or attention seeker who was wasting their time.  After all, someone who is in so much pain shouldn’t be able to move better in certain ways than a normal person, should they?

It’s only been two days since my diagnosis but already the anger is subsiding.  It’s still here but it’s fading, making way for something I haven’t felt in a long time when it comes to my health: hope.  The hope that with a lot of hard work and a little luck I can go back to something resembling normal.  That maybe I can sit or stand for more than half an hour without being in excruciating pain. That maybe I can walk around the mall without everyone’s eyes on me because my appearance doesn’t match their idea of how a disabled person should look.

After all these years of pain and suffering, things are finally starting to look up.

7 comments

  1. patricksponaugle

    Obviously, you understand that my “liking” your post is to show support and appreciate that hopefully things can get better now that you have a real diagnosis, and real treatment options. Of course, no one would like that you’ve been in such pain for so long, and were treated so poorly in the past.

  2. charliegirlteachergirl

    Carrie, I am so sorry for your struggles. It is so disheartening that so many take the Hippocratic Oath and often forget the part “do no harm” – they forget that by not truly seeing each patient as an individual with pain or symptoms, they do nothing to help them. They only prolong (and worsen) that pain or those symptoms. I would definitely look into filing a complaint with the medical board (or the equivalent in Canada) against those doctors who accused you of basically being a drug addict. I have gone through a similar (much smaller scale) issue with my ears and hearing. Audiologist claims I have “normal hearing in an IDEAL (completely silent) setting”, but I’m deaf in any other circumstance. Doesn’t that mean I have hearing loss?!?! The ENT blames everything on my allergies. It’s very frustrating, and I only experience minor pain and inconvenience in comparison. I hope this new physiatrist has the experience to truly help you so that you can take your life back.

    • Carrie Slager

      Thanks so much for your comment. I’m sorry you’ve had to go a similar thing.

      The thing is, after all this time I don’t see the point in going through a long complaint process. Besides, treating patients like crap is just sort of accepted surgeon behaviour so if the medical boards are ignorant of it they’re idiots.

  3. Dianna Gunn

    I have a chronic pain problem in my wrist that has gone undiagnosed for several years. It developed when I was in my teens and for three years I also went through a lot of dismissal from various doctors. Finally someone took me seriously enough to send me to a special clinic at the hospital, where I was told I’m hyperflexible and “hyperflexible have problems like this” but what “this” was is still unknown.

    It’s appalling how young people with chronic pain problems are dismissed or ignored. I’m glad you’ve finally gotten a diagnosis and I hope you’ll be able to start doing some of the sporty things you love again someday relatively soon 🙂

    • Carrie Slager

      I’m sorry to hear you went through a similar thing. People dismiss young people with pain because “you’re too young to be in pain”. And yet, I am! They think you’re faking even when you show symptoms that are very hard/impossible to fake (like the hypertrophic change on one of my vertebra).

      I wish there was a way to change perceptions of chronic pain both for physicians and the general public but it’s very misunderstood.

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