Hello Everyone!

Big things are happening in Doulaland!  Today’s postcard (letter) is personal. Some of you may be aware that I’ve been sick since June 2015, dealing with gastrointestinal, neurological, and many other symptoms. I went to six doctors, all of whom diagnosed me correctly with a condition requiring treatment. But none of them could look at the big picture and help figure out why my body was falling apart. 

Being a research scientist, I kept searching. I finally found my answer through a random midwifery blog post!  It turns out I have a rare genetic disorder that affects every organ in  my body and every aspect of how my body functions. I’ve been adapting my entire life to perform at able people’s standards without knowing it. 

It’s a rather depressing diagnosis that has a pretty lousy future. I now have many limitations. However the news isn’t all bad. I live near a top notch medical research university. There is an established treatment pathway in the Chronic Pain Disorders Clinic with education, multiple therapies, and medications. I will do what it takes to maximize my life's potential and I have help doing that.  

The first month of adjustment was really rough. I had to grieve for the life I’d wanted to have for myself and accept the reality of what my life really is. It mirrored what  POSTPARTUM was like for me!  My doula friends applied the principles of “Distraction, Relaxation, and Get Up And Move” all that first month – just like in EARLY LABOR. There wasn’t anything I could do about being heavily symptomatic – just time and letting my body heal. Sound familiar?  

I now have an established routine. I sleep a lot and do over an hour of physical therapy every day to minimize my symptoms. I can still do anything I want to with writing, research, advising or teaching. It just takes longer. I can still travel and speak at events, I just plan more rest.  And I can still train doulas for four days at a time! The neural pathways in my brain are so well established that after 21 years I intuitively know how to balance activity and rest to be my best. 

Many of the changes I’ve gone through have been internal.  With my disorder, physical fitness is paramount and my skin glows.  So I always look great even though I feel awful.  That’s another reason it took so long to diagnose – in reality I’ve had the major symptoms my entire life. I was never honest about how much I hurt, because I thought everyone else did too. It’s been very eye opening to think I had a “normal” view of the world but in actuality, I'm profoundly disabled.  Down to my DNA, my body experiences the world vastly differently than normal people.  In some ways it shook me to the core – all the unnecessary self judgment I’ve had, when in reality I never ever could achieve what others could.  All the guilt I had for taking time and money for self care the last thirty years!  Now I know that without all that bodywork I’d probably be bedridden – I’ve met enough other people my age with my disorder to know it’s true.   

But the payoff of becoming more and more disabled over the years is that I developed a strong sense of compassion for others as well as myself.  Empathy, compassion, the ability to listen, to truly doula in a nurturing way – those are things I learned over these past decades.  Treating my self and my unknowingly disabled body with care and compassion has been a discipline, like yoga.  I had to actively maintain those skills to have a meaningful life as I defined it.  Those are the gifts of the doula, and I’m immensely grateful to be one. I have a feeling you are too!