Loneliness is my companion. I must first be clear, for me, there is a difference between being
alone and loneliness. Stillness and spending time alone are an essential part of my pain
management. Taking time to rest my body and quiet my mind is much different to me than
feeling the ache of loneliness from being misunderstood, dismissed and not being heard by
those whom I love.

I am someone who lives with chronic pain and many chronic overlapping conditions. Whether
it’s at a doctor’s appointment, home alone or with my support system, loneliness is just a breath
away. It’s there in the subtle comment, “but you look good.” Or when I’m awake in the dark
night wondering how many more nights the pain can keep me up. And, again it’s there when a
new doctor doesn’t hear my truth, dismisses my facts as if they aren’t my own and then leaves
the room.

Living with chronic pain is like living on an island all by myself. I can’t explain one moment to
the next what it feels like living in this body. It’s always changing. What works one day for pain
and symptoms, may not work the next. I have a baseline pain each day that I believe most
would consider to be urgent care or emergency room worthy. It’s years of trial and error,
procedures and surgeries, some successful and others with complications. It becomes a very
isolating place to be. Loneliness is my companion. Who am I? Does anybody hear me?

Loneliness shows up when I see others doing things I used to do and no longer can. I feel it
seep in when my pain is compared to someone’s uncle who had the “same” thing but he went to
the chiropractor and was “fixed right up.” It’s even there in my support system who
unintentionally forgets that this is my every day. Chronic means persistent, constantly recurring.
This isn’t something that goes away like a cold someone once had.

I have had to learn coping strategies to walk with my companion of loneliness. One of the
greatest things that has helped me has been finding a chronic pain peer support group. Finding
a group of people that are like minded and like bodied has been life changing for me. I can
show up just as I am. I am seen, heard and validated. We can support each other and
normalize so many of the feelings each of us are having. Together we work on tools, tips and
strategies to navigate through it all.

Another powerful tool for me is advocating for myself. Using my voice and communicating my
needs to whomever that may be. If it’s a provider, I come with a list of questions so I don’t forget
due to brain fog. I take notes or record the appointment. I make eye contact and ask them not
only to listen to me but also hear what I am saying. This is my truth, believe me. I don’t have a
problem with a healthcare provider saying I don’t know, but please follow that up with a plan.
Advocating for myself with healthcare providers and my support system has helped me feel less
lonely and more like I am a part of a team.

And lastly, one of the greatest gifts I have given myself is the gift of self-compassion. It took me
a long time to allow myself the permission to honor myself in this way. Through positive self-talk
and self-touch, I show myself the love and respect that it deserves. “Sara, I know this is hard. I
love you” as I rub a sore spot on my body. “I am safe. I am loved” as I put a hand on my heart.
I give myself this gift throughout the day as I celebrate the wins and allow myself the grace
when it is needed.

Loneliness is my companion living with chronic pain, it may always be there. I have had to
make the mind shift that if it is hard for me to understand my pain, I have to believe for the rest
of the world how hard chronic pain must be to understand. My hope is for those who work and
love people living with chronic pain, believe us. There is nothing for us to gain to not share
anything but the truth as we know for that moment. What is true for that moment, might not be
what is true for the next, but in that moment, believe us. Loneliness is my companion, but I am
not alone.