Friday, September 18, 2015

If You Need Me In The Next Two Months...

This is where I will be (because I do not know how much blogging I will get in between trips).  The green boxes are when I am working and the pink boxes are traveling for various conferences, including Stanford Medicine X, ePatient Connections, and Patient-Centric Clinical Trials.

I will be traveling for about a third of each month in September, October, and November. 

Try and keep up!  I do not know if I will be able to...

Wednesday, September 2, 2015

“I Feel Your Pain”: Four Words That Anyone Living With Chronic Illness Or Chronic Pain Would Like To Hear

A lot of us hope to receive compassion and understanding from those we are closest to.  However, most of us feel like we would never want our loved ones to get sick, and that’s the only way they would understand. 

But at some point, they will experience pain, too, even if it is just acute pain.  And it’s how they experience that pain that is really critical to those of us who deal with chronic illness and chronic pain on a daily basis. 

Recently, my BF had back pain.  He was laid up with an ice pack and it hurt him to move.  I tried to be supportive to him because he’s supportive to me when I’m in pain.

But this was more than that. 

He said, I don’t know how you do it all the time.  I knew where this was going, but I wanted to hear him say it.  Being in pain.

For him, one day of intense pain was enough to basically make his life miserable.  So multiply that by 24-7-365 and you’re looking at my life in a nutshell for the past eight years. 

Now you have to understand, my BF and I have been dating for three and a half years.  And we have pretty much spent every day together since we met. 

And maybe that’s what it takes.  Not just spending all that time together, because there are plenty of people that do that and still don’t have any understanding of what their loved one is going through, but to really be open and honest with each other.  

My BF is one of the only people that I am really open with about when I am in pain and where, because most other people just don’t want to hear it or just don’t care.    

Recently, it’s come to my attention that some people have viewed my behavior as aloof and standoffish.  But when you’re in pain all the time, it’s hard to be happy and cheerful.  I do the best I can to put on a brave face, but it might not come across that way.  And even if it does, I really have no other choice but to live with and through the pain.  Otherwise I would never get out of bed or be able to do anything.  But I get up in the morning, for the most part, and get myself to where I need to be.  And to me, that’s enough.  But for some people, that’s not enough.  But if they haven’t experienced pain, or they’ve never extrapolated their pain experience onto someone who lives in pain, they aren’t going to get it, and they aren’t going to understand that sometimes doing the best you can is really all you can do.   

And until you’re not in pain anymore, you don’t realize the negative impact that near-constant pain can have on your life.  It wasn’t until I got a very successful cortisone shot in my hip, in March that, not only myself, but others around me, noticed a distinct difference in me.  People told me I seemed lighter and happier.  And I am.   

Because pain is a drain on our bodies and our brains.  It takes everything you have to work through it.  And sometimes, no matter how hard you try, you just can’t.  And that’s okay.  There’s a time and a place for that. 

While my BF didn’t directly say I feel your pain, by saying that he didn’t know how I dealt with pain on a daily basis based on his experience of one day of significant pain, made me feel that progress had been made.  That maybe he’s one step closer to getting it than almost anyone else in my life. 

And it’s important to have that with the person you spend the majority of your time with.  It takes time.  And not all people know how to be empathetic.  Some people will never get there.    

Being in pain is more than a number on an arbitrary pain scale.  It’s about living life to the best of your ability in spite of being in pain.  Whether that happens gracefully or not, I don’t think matters.  What matters is when someone in your life, even if only for a day, gets a glimpse into what you are going through.