Things I’m grateful for: people who are brave enough to tell the stories I’m not

I’ve just discovered Rachael Steil’s sharing of her story as an elite college runner with an eating disorder.

And I’ve really been blown away, both by her bravery in telling her story, as well as her clear and honest explanations of what she and other people with ED’s go through.

I still haven’t shared too much about my own past with an eating disorder– I started to touch upon it in this post— but really, I have a story that’s as long and complicated and intense as hers (minus the part about being an elite college runner– I had long been injured by then).

But I relate so much, to the concept of losing a little bit of weight, and finding it makes you faster, and so then wanting to lose a LOT more.

Of latching on to healthy, trendy “lifestyle” diets– in her case, the raw food diet– because ultimately, you know it’s giving you a way to hide the fact that you have a problem from other people.

And of the paranoia of thinking that if you overeat, even if just for one day, you’ll gain enough weight to slow you down and ruin your time in your next race.

I so, SO appreciated her story, and I can’t wait to read her book.

I think that, when talking about this kind of thing, it’s really important to strike the right balance between sharing the some of the scary aspects of what you went through, while also reassuring people that you eventually found a way out.  That’s one thing that’s held me back from telling my story more– I want to be sure I do it right.

I think Rachael has managed to strike that right balance, so the way she tells her story is really an inspiration for me.

Hope you check it out!

Rachael’s website

Youtube channel, with many more great videos

Her book Running in Silence

 

Healing our bodies, and the things that ripple across generations

IMG_3999

A little over a year ago, I started a second blog to focus on what I’d come to think of as this weird hip problem I’d had for years that no one seemed to understand (sacroiliac joint dysfunction).

Among friends, I usually tried not to talk about it too much, because I didn’t think anyone else would want to hear about it.  Sometimes I wondered if it was all in my head, since so many of the doctors and physical therapists I’d seen didn’t seem to know what I was talking about.  I was embarrassed to tell people about it, since only my chiropractor seemed to believe it was a real problem (and you know how skeptical I am about most things alternative health).

I started My Sacroiliac Joint Saga one warm day in May.  I’d had an absolutely awful day, and was just about reaching my breaking point with this problem and thinking I might need surgery.  I didn’t really think anyone would want to read what I wrote, but I left it set to “public” just in case.

But a funny thing happened.  Once I actually gave myself permission to focus on the issue, instead of judging myself for it, I found I had a lot more time to problem solve.

I used the mental energy I’d once devoted to questioning myself instead to research the problem from every possible angle.  Not everything I read was helpful to me, but by giving my full energy to the problem, instead of wondering if I was crazy, I ended up finding the answers I needed.

And it turned out there were people out there who were familiar with this problem– patients who had experienced it themselves, and doctors and PT’s who treated patients with it, and were even contributing to research on the problem.  I just hadn’t had the luck to come across any of them.  Looking back, I think the reason why is that I stopped searching too soon.

***

Last spring, I wrote a post called “Inner Limits,” about how I was coming to realize my past with an eating disorder was haunting me more than I knew.

Internally, I had set certain limits for myself on how much time or energy I was willing to spend focusing on fixing a “problem” with my body, and so I held myself back.  I did my exercises, I went to the chiropractor once or twice a week, I maybe read one or two articles a month on it, but that was it.  Other than that, my main focus was sticking to my routine, as if pretending I didn’t have a problem could somehow limit the effect it had on my life.

But really, as I wrote in the post, there was more I could do.  I could do more exercises; I could do more stretches.  I could spend an hour a day researching, if I really wanted to.  I had the time… for some reason, I just wasn’t.  Because I was afraid to devote my full attention to it.

Funny, right?  Here I’d been working on this blog about my journey with central sensitization, and how much it took me to find answers for it, and how for so long I’d felt misunderstood when I had a legitimate medical issue.   One of the main messages of Sunlight in Winter has always been “Believe in yourself.  Your pain is real and you deserve help.”

And yet here, the same patterns were playing out with my sacroiliac joints.  Deep down, despite what I’d already been through, part of me was still afraid that if I fixated too much on my body, and trying to “change” it, it would trigger the same level of obsession that drove my years of starvation and overexercising.  So I held myself back.

***

I haven’t written much about my family history on this blog, and I probably won’t say more than this anytime soon.  But in the past few years, I’ve come to realize that some of these thought patterns of self-doubt didn’t start with me.  Often we learn them from somewhere– usually, consciously or not, from our families.  These patterns can be passed down, and I think they very much were in my case.  There were things that happened in my family long before I was even born, that sent out ripples across generations.

I realize now that I have been on a long road– not just with my health, but with learning to believe in myself; to trust myself.  There were events that occurred in my family, long before I existed, that have affected my life and my ability to believe in myself.

Now that I’m aware of how the past has been affecting me, I’m learning to see things differently; to create my own future and way of seeing things that’s healthy, and works for me.

I won’t always be able control what my body does (I’m sure anyone reading this blog can relate to that!).  But I can control the way I see myself, and I don’t have to let health issues affect my self-perception.  Just because a doctor can’t give me an answer for something, it doesn’t mean the problem is in my head.  It doesn’t mean my problem isn’t real.  I can’t make a problem worse by “dwelling” on it when what I’m actually doing is researching and trying to find answers.

***

I don’t believe that everything happens for a reason.  I believe that, most of the time, the best thing we can do is to try to make meaning out of something for ourselves, whatever that turns out to be.

I don’t know if all my health issues happened for a reason, but now that I look back, I  know this common thread was there all along.  Compartment syndrome, central sensitization, sacroiliac joint dysfunction.

All of these problems were real; all of them were hard to get diagnosed, and hard to find the right treatment.  But for each problem (and I know I’m fortunate in this) there were eventually answers out there.

I know this is not true for everyone who writes under the “Spoonie” banner, but for me, my major health issues have all turned to be manageable.  There were answers out there, and I probably would have found them sooner if I had taken myself more seriously, and believed in the possibility of finding answers.  Or, I should say, the possibility of being understood.

***

Over the past weekend, My Sacroiliac Joint Saga hit 10,000 total page views.  I still can’t believe this blog I started a year ago as a somewhat embarrassing side project has grown to this extent, and helped so many people.  (And I know this because of all your kind comments and messages– thank you!).

And, aside from page views, 2016 Me still can hardly believe how fortunate I’ve been to finally find answers to this problem.  When I was at my breaking point that day in May, getting better wasn’t something I could really even picture.

So let this be a reminder to me, and to you if you’re reading this, to never let our health issues change the way we see ourselves.

We are so much more powerful than we realize… we just have to be able to see it in ourselves.

IMG_4091

 

 

Maybe my weaknesses aren’t weaknesses. Maybe they are strengths.

21105481_938749316908_3692232005439858376_n

When I first started this blog back in 2012, I kept it largely a secret from the people in my life.

I wanted to help people struggling with the same things I’d been through, but I was afraid of the consequences of putting so much personal information online.

After all, wasn’t putting a long list of all my health issues, and detailing my sometimes-inability to get through work or school just giving potential future employers a reason to not hire me?

But as time has gone by, I’m starting to see things differently.

***

Now, this post isn’t meant to be just about me.  I’m not trying to come on here and just brag about how great I am.

But the more I write, and read other blogs, and interact with other people sharing their own stories, the more I realize just how much courage it can take to really face the cards you’re dealt, and try to make the best of a rough situation.

And that maybe, just maybe, other people will be able to see that about you.

***

I stumbled upon a J.K. Rowling quote recently that I really loved:

“It is our choices, Harry, that show what we truly are, far more than our abilities.”

We are more than the sum of what our bodies can or can’t do.  I believe we all come into this life with certain lessons to learn and challenges to face, and physical limitations are one way in which we do that.

However, we can’t always count on others to immediately understand, or know what we are going through.

Which has led me to wonder…

What if we told our stories more, not less?

Will a future employer really look at my blog and count up the number of times I said I wasn’t feeling well?  Or will they look and see that I love to write, and that I’m doing my best to explain scientific concepts to a general audience, in the hopes that it might help others?

Will they really go through and count the number of years it’s taken me to get through all of my grad school prerequisites?  (Well, probably).  But, if they read through some of my posts, they should be able to see that, on the subject of chronic pain, I’ve basically already been to grad school.

A different kind of grad school, maybe, but I think you can certainly call what I’ve been through “Advanced Study.”

I speak from experience… I practice what I preach.

IMG_3106
I’ve been trying to get more comfortable with putting photos of myself up online… here’s a nice dark blurry one!

***

I’ve had a number of misunderstandings recently with people I care about.  The misunderstanding arose because I thought they already knew my perspective and what I was going through, and then it turned out they didn’t.

It’s led me to the realization: how can I expect people to know if I don’t tell them?

Maybe keeping quiet and assuming people will be able to read between the lines isn’t the right thing.  I generally try not to complain… but I’m starting to realize that maybe I’ve taken it too far, into not actually sharing my reality with others (funny, because I CERTAINLY share it online!).

My new goal, going forward, is going to be to speak my truth, honestly and compassionately.  And if chronic pain is part of my truth, then I will not filter it out. If people are truly going to understand me and where I’m coming from, maybe they actually need to know.

***

Part of what’s helped me get to this point is that I’ve recently discovered so many great writers/bloggers/poets, who have put into words not just what I’m feeling, but a place, emotionally, where I feel I ought to be going, if that makes sense.  I didn’t know it was my goal, or what lay ahead, but when I saw someone else put it into words, I recognized it.  My next lesson; my next place.

I had so many quotes I wanted to share with you in this post, however I’ve settled on this one from the amazing writer/poet Bianca Sparacino.  I discovered this quote from her a few months ago and it’s had a profound impact on me ever since:

bianca sparacino express.jpg

 

I want my communication to be clear, focused, and kind.  I want my words to reflect the truth.

Those of us struggling with chronic pain don’t want to complain.  We don’t want to overwhelm others with negativity.   However, we also need to remember that the people in our lives are not mind-readers.

If you really want to share your story with people, you can’t edit parts out.  It might be a temporary solution, but it only lasts for so long, before your longing to be understood will re-surface.

So instead of telling the truth by accident, or when we feel we have no other choice, why not just… say it?

 

 

How I developed central sensitization: Part 5

For a few years, I was stuck: caught between all of the doctors I saw, who thought there was something wrong with me psychologically, and the fact that deep inside of me was a calm, inner voice that knew it just wasn’t true.

***

Feeling as though I’d run out of other options, I became really interested in alternative medicine.

I still wanted an explanation for my pain that had something to do with my physical body.

I wanted to be seen; I wanted to be heard: I wanted to be believed.  And the alternative medicine practitioners I saw were able to provide me with that validation.  They believed me– of course the traditional doctors hadn’t been able to solve my problem.

***

For a while, I went a little bit off the deep end.  I read just about every book I could find on energy healing.  I started taking turmeric capsules instead of Advil; I bought crystals.

I began to see traditional medicine as somewhat of a sham, propped up by the pharmaceutical companies.  And I thought anything that fell under the heading of “alternative” medicine had to be good.

***

I had a lot of reasons to reject the “establishment” view.  The establishment, after all, is what failed me.  I’d slipped through the cracks, so many times; the safety nets I’d counted on had turned out to have holes in them.  Of course, it made sense that what was “traditional” had failed me again.

***

Now, I don’t want to offend anyone by insulting or dismissing an approach that has been helpful for them.  But if I were to give you the complete list of everything I tried, well, just about every “alternative” treatment is on it.

However, the truth is that nothing I tried worked, and all of it cost me a lot of time and money.

Looking back, there were definitely times when I must have been “that crazy person,” insisting to people that they try this same new treatment I was doing, or that they consider the fact that their headaches or thyroid problem could be entirely caused by blocked energy flow in the body.

My views have changed a lot since then– the science classes I’ve taken have opened my eyes to just how much we really do know, using “regular” science.

But I still have a lot of empathy for the “crazy” people, because I was one.  I know how easy it is to believe a convincing claim from a caring person who probably genuinely thinks they’re going to to help you.  Especially if you don’t have much of a scientific background.

I used to believe some crazy shit I’d be really embarrassed to admit to you now.

That’s why, even though my perspective has changed, I don’t believe in shaming people, or embarrassing them, for trying to do something to heal themselves.  Everyone is on their own path… and some of our paths can get a bit convoluted.

***

I’m not trying to say that alternative medicine doesn’t help anyone.  I believe there are some treatments that are probably more legitimate than others (for example, acupuncture has been shown to have some pretty significant effects for pain relief, although evidence suggests it may be more due to the body releasing endorphins in response to a needle than anything else).

But at the end of the day, I was struggling from the effects of central sensitization, which none of these belief/treatment systems had any means of addressing.  There’s no way any of these treatments were going to help me, because even my original “diagnosis” was always wrong.

I felt better, emotionally, when I was given an explanation that had to do with my physical body… but ultimately, all of the treatments fell short.

After all, there was no way any school of thought was going to help me, if it didn’t even have a name for my problem.

To be continued in Part 6!

To read this series from the beginning:

Learning about central sensitization: the power of naming, and the future of pain treatment

IMG_3204

Whew.

I have really enjoyed writing my more personal posts recently– I love to tell a good story, and to feel as though my past experiences have some meaning.  (And I’ve really appreciated all your kind words, comments, and shares!).

But also, wow– some of those posts were very emotional for me.  Right now I’m kind of feeling the need to come up for some air.

So let me back up for just for a minute, and talk about some of the things I’m optimistic about, in terms of the big picture in treating chronic pain.

The more we know about central sensitization and the way pain works:

It gives us the power to name things.  

This is something I’ve been thinking a lot about recently.  Sometimes, there is a healing power that comes just from being able to put a name to something; to receive a diagnosis, and know that you aren’t the only one.

As I explained in my last post, when I finally learned the term central sensitization, it helped me to feel validated, and so much less alone.

Sometimes healing can come not from completely “fixing” your condition, but from being able to make meaning out of it for yourself; constructing a coherent narrative that makes sense.

And of course, it’s much easier to make sense out of something when you actually know what it is.

Having an actual diagnosis can help us explain ourselves to others

At least, I assume it does.

As I have mentioned in past posts, the truth is that I have often struggled to articulate what’s happened to me in the people in my life.

Of course, it didn’t help that I didn’t really have an explanation that made sense for it myself, for most of the time, or that even now that I have an explanation, it’s a condition that’s still fairly unknown.

This is why I am doing my best to raise awareness and get the word out.

The more we, as a society, understand about pain, the more treatments we can develop.

There is just so much to say here.  The more I learn about pain, the more and more I realize I don’t know.  It’s really such a fascinating subject.  I try to talk about some of the highlights on my blog, just to give you a sense of how broad the subject really is.

But in a nutshell, our growing scientific understanding of pain can lead us to all sorts of new treatments, such as:

New pharmacological approaches: I’ve recently discovered Gracie Gean’s Youtube channel, and her story about receiving ketamine infusions to treat CRPS.  I totally recommend checking it out!

Brain imaging and biofeedback: I’ve written before about the work of Christopher deCharms and others at Stanford University, who use functional MRI to teach patients to mentally “turn the volume down” on their pain.

Pain neurophysiology education

And of course, once you understand that pain is one of your body’s protective responses– it’s actually there to keep you safe, not make you miserable– this can help you learn to work with it, not against it.

This is the premise of pain neurophysiology education, which I talk about in the “Calming Your Nervous System” section of my blog.

When I was in the midst of my struggle, I happened to find a physical therapist who had taken a PNE course with Neil Pearson, and that was the moment things really changed for me.

I learned to view my pain not as an automatic indicator that something was wrong or broken in my body, but as my body’s attempts to protect me.  And, each time something hurt, it was possible my body was overreacting, like a jumpy alarm system, or an overprotective friend.

This helped me to mentally take a step back when things began to hurt, and re-evaluate what I intellectually thought the pain was likely to mean.  And even just realizing that I had the ability to do this– that pain didn’t always have to mean something was wrong– helped me to begin to end the cycle I’d been caught in.

So, that’s all for now.

I’ve got a bunch of posts planned for the next few weeks that I’m really excited about.

I’ve also recorded a podcast interview with Matthew Villegas for The Capable Body Podcast about my experience with pain neurophysiology education.  Although I was afraid I sounded super awkward, Matt assures me the episode will be good!  It should be coming out sometime in September– I’ll be sure to let you know when it does.

Stay tuned!