I have been asked where I learned how to
become a compassionate therapist..from
my graduate training, great supervisors,
or other life experiences? All of the above.
But, the greatest teacher of all has also been
my greatest nemesis. It goes by an acronym
called ME/CFS or “chronic fatigue syndrome.”
It Began With Mono
After suffering an extremely severe bout of
mononucleosis as an undergraduate, so severe
I was sent home from my University with an
enlarged spleen and a constant fever, I have
(so far) had 3 major reactivations of the
Epstein-Barr and Cytomegaloviruses in my
lifetime. Each time this happens, I go from
being someone who can keep 15 plates spinning
at once to someone who can barely lift one,
much less get it spinning or keep it spinning.
I am experiencing a reactivation currently,
although it is not as severe this time as the
last two I have experienced.
More Than Fatigue
The first sign of a bout of chronic fatigue is
that I need to nap when I get home from work.
Not in the “Oh, I’d love to grab a quick cat nap”
sense, but in the “I will only have the slightest
chance of being able to get dinner ready if I
lie down and sleep for 2 hours RIGHT NOW!”
sense. And sometimes dinner doesn’t happen.
(Thank goodness Wendy’s has great salads.)
The fatigue is unrelenting and no matter how
much sleep I get, I never wake up refreshed or
with any energy.
There is a litany of “aches and pains” that go
along with the disorder: muscle aches and cramps,
the sudden inability to exercise, sore throat, lymph
glands swell, joints ache, and my brain suddenly goes
into “brain fog” mode, where I can’t seem to put two
words together back to back. For a writer and poet,
this is one of the more frustrating symptoms,
but it at least isn’t painful. (A positive!)
Although many people experience mood swings
and depression with ME/CFS, I usually go through
a week of “Why me, why this again?” when it hits,
but have been spared long bouts of severe depression.
I credit knowing cognitive therapy for this.
An Invisible Illness
ME/CFS is one example of what is called an
“Invisible Illness,” which I have written about
before on my blog.
On the outside, I look fine.
On the inside, I am so tired I can hardly function.
Some days it takes everything in me to get showered,
dressed, and off to work. I am grateful to have work
that is not physically demanding, and the ability to
spend my workday focusing on others actually
helps me on tough days to not focus on what I am
not able to do myself.
The vast majority of my clients do not know I suffer
from this, because it is not relevant to them.
It is not a part of our therapeutic relationship and
doesn’t need to be. Occasionally, I may share that I
understand something of what they are struggling
with by relating some of my own experience with this
While most of the clients I work with do not know
I struggle with chronic fatigue, both I and they
benefit from what I have had to learn from CFS.
I have had to learn (am still learning) how to be
compassionate and gentle with myself, when what
I want to be able to do is no longer possible.
I have had to embrace this imperfection in my
physical self and learn incredible amounts of
patience to sit with pain, fatigue, and the never
knowing how long it will be before I feel better.
I have to learn to forgive myself for not being able
to be my “best self” for my husband, my daughter,
my friends, my family, and my community when
I simply do not have the energy to do all that I
would like to.
I am able to understand from a place of chronic
fatigue some of what it must feel like to wake up
with depression each day. I wake up tired and
must still face the day and what it demands,
regardless of how much energy I have. That
is depressing and tiring. I have learned how
to break down everything into baby steps, not
only because it helps my clients who are over-
whelmed with anxiety or depression, but also
because it is the only way I can get anything
accomplished when I have to rest between
I know what it is like for people to not
understand why you can’t just “snap out of it”
and think that your symptoms must just be
“all in your head.”
I know how hard it is to have to depend
on others to get even basic things done,
like getting your child home from school,
getting groceries or dinner, and how good
it is to know you don’t have to struggle with
In The Same Ocean
Many people have written to me and told me
how much my blog posts or therapy with me
has helped them and I am always so happy
that this is the case.
I just want to be sure that people know that
my ability to be helpful comes as much from
a place of needing help, and discovering how
to help myself, as much as it does from my
being an “expert” on how to help others.
I always stress that we may not all be in the
same boat, but we are definitely all in the same
ocean. And sometimes it is a very angry, choppy
ocean that’s going to take a lot of skill to
navigate. Maybe even an ocean rescue if it
comes to that. There’s no shame…it’s much
better than drowning.
It Takes A Village
I’ll get through this most immediate bout,
because I have learned to reach out for help.
I have a team of professionals who are caring
and compassionate and do their absolute best
to help me to recover quickly.
I follow their advice and treatment protocols,
take time to take care of myself, doing less for
others, and conserving precious energy.
I have a partner who suffered a bout of CFS
decades ago, and knows what it feels like
to try to manage feeling this way.
I have friends who I am not ashamed to tell
“I’m sick again” and may need extra help with
getting things done.
I have the advantage of knowing this won’t
last forever, even if it sometimes feels like
And I know that I will get better faster if I push
myself less and love myself more, just as I am,
sick and tired and all.