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| Nominations: Patient Leader Hero and Best in Show: Blog |
The WEGO Health Awards program was created to recognize and honor those
making a difference in the online health community. It provides the opportunity
for community members to thank and support the Patient Leaders and
patient-centric initiatives they admire. (wegohealth.com)
Though it sounds cliché, it is an honor to be nominated for these
awards.
I say this not to brag, not even to ask for your endorsement. I am truly grateful for the nominations, and
so glad to know that my friends and fellow warriors see me this way. That is what I’m always striving towards –
not the recognition for myself, but to make that kind of impact on others who
need it. Seriously, my heart is
overflowing with this idea.
But if I’m being totally honest (and what else is a blog for, if not
total honesty?), what I feel most of all is … unworthy. Perhaps in previous years I could understand
the nominations, could even almost believe that I deserved them (not to win,
mind you, but at least to be nominated).
But looking back on the past year, it’s just been a mess, and I don’t
feel like I’ve lived up to it.
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In my head, I know it’s not
totally my fault – I’ve spent so much of this time sick, flaring, and
incapacitated, so I couldn’t do anything no matter how much I wanted to. And I know that in between those flares – and
even through some of them – I still did a lot (which, of course, contributed to
the next flare, or exacerbated the one I was already in). I even know that everyone – including me – needs
to take breaks sometimes, both for physical and mental wellbeing. But I also know that there’s often a big
disconnect between what we know and what we feel.
What I feel when I look
back at the past year, is disappointment.
There’s a ton of frustration, too, at all the symptoms and flare-ups
they can’t explain and the top-of-the-top specialists who can’t help. But I also see all the things those flares
made me miss. I lost days, weeks, even
months at a time, unable to go where I wanted to go or do what I wanted to
do. I missed holidays with the family,
spent vacation days in my room, and cancelled plans with friends again and
again. I even missed doctor appointments
and aqua fitness classes more times than I can count (my chronically ill
friends surely understand how it’s possible to be too sick to go to the
doctor). But that’s just for me. What really upsets me are the opportunities I
missed to do what I do, which is to say, to do for others. I couldn’t make it to the blood drive I’d
organized or the state advocacy trip I’d helped coordinate. I had to stay home from awareness activities in
the city, and missed a meeting for the support group that I started. I even said no once, to a speaking engagement
I was asked to do for an organization that I love at an event that would have brought
awareness and support to a new group of people.
What I feel when I look back,
even at the events and activities that I did attend to, is regret. I feel like I didn’t give them as much attention
as they deserved. I didn’t promote them as much as I should have or do as much
as I wish I could have to recruit participants and solicit sponsors. I just didn’t have the strength, energy, or
time to do it all. And so the events
were good, but not as great as I’d hoped.
We reached the community, but that reach didn’t extend as far as I’d anticipated.
What I feel when I look back
at the others in my community, is guilt.
There are so many who have gone through so much – surgeries,
hospitalizations, new diagnoses and treatments, not to mention the life
events that can affect us differently than they do healthy people. And I feel like I’ve been a bad friend, a bad
daughter, a bad wife. I haven’t reached
out enough, I haven’t been there for them as much as I wish I could have
been. They deserve better.
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| Image by Snap_it by Pixaby |
The thing is, when I’m in that awful state – feeling so weak I can
barely lift my arms, with chills and sweats that make it impossible to sit
still yet just as difficult to move, pain that reaches every inch from head to
toe or stops me in my tracks and remains laser focused in one spot, so utterly
exhausted that all I want to do is sleep, yet never refreshed even on the rare
occasion that I do sleep through the night – I just retreat. Physically. Mentally. Socially. When it gets that bad, I just don’t have it
in me to be or do anything for anyone (including myself). I might scroll through social media, might
possibly like a post or a tweet, but
I can’t even bring myself to post a comment.
I don’t text anyone. I don’t
email anyone. I tell myself that I
should, decide I’ll do it later, but later never comes. I don’t have the energy to hold a phone, let
alone a conversation, so I can’t check in on my friends & family who are
going through difficult times, themselves.
As much as I know in my head that all of that is
ok, that it’s ok – even necessary – to step back and focus on self-care, in
whatever form that takes (including retreat), that doesn’t really help how I feel.
I had a discussion about all this with
my therapist the other day, and she suggested that I think about my value as a
person aside from what I do for other
people. I sat there for a moment,
looked at her, and asked, “what else is there?”
Caught between what she thinks of me and how well she knows me, she had
to ask if I was making a joke … but I think deep down she knew I wasn’t.
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| Image by Gerd Altman by Pixabay |
This seems to be an extension of the
identity crisis that many of us go through when we become disabled: so much
of who we are is wrapped up in what we do, that when we can’t do it
anymore, we’re left wondering who we are. When I lost my career, I felt like I lost
myself … but as I’ve gotten more and more involved with organizations and
activities to support other people with chronic illnesses, the more I felt like
that piece of myself was still there.
And the more I took on, the more it felt like I was really me
again. My friends’ most common response
when I’ve taken on another responsibility is, “of course you have.” Of course I have. It’s what I do. It’s who I am. But lately, it hasn’t been.
In my head, I know there is more to me than what I do for other people
(I mean, there has to be, right?), but I’m struggling to figure out what that
is. I’m struggling to reconcile what I
know with what I feel, but I think part of the process is writing it out like
this. Just like a few months ago when I felt
like a slacker, there’s some clarity that comes with hearing myself say it
out loud or reading the words as I’m writing.
I know what I would think and feel and say and do if a close friend said
these things, and I can imagine the response others would have for me. I know reality
is probably somewhere in between, but when it comes to the WEGO Health Awards,
the reality is this: it doesn’t really matter whether I feel worthy right now;
someone else feels that I am (or, technically, a couple of someones), and that
feels pretty darn good.
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