The other night, my eyes were opened to a whole new area of chronic disability.


I’m a little ashamed to admit that I had never really given much thought to chronic health
conditions, probably because I do not have one.

Two-year old boy with a trach, necessary due to chronic obstructive apnea.


This might sound surprising since, as you know, my son is medically complex and does
indeed have chronic health conditions. He takes a variety of medications daily, he gets infusions
every other month, and we have to watch for a number of other symptoms that occasionally
flare up when his body is under physiological stress. He is developmentally disabled and will
never be independent. This is our life, and I don’t give it a second thought.


People always ask “How do you do it?”
And I say, “I just do.”

Chronic care


But, it’s not my body, it’s his. Believe me, I empathize. I feel his joy and his pain every day. If
he is happy, I am happy. If he has a bad day, so do I. I take it for granted that I am able to care
for him because I have to be able to care for him. I don’t have a choice.


I have support, and I get breaks. He has private-duty nursing and Personal
Care Assistants who take care of him at home, and he has extremely qualified nurses and staff
who provide him with a safe, fun, and stimulating environment at school and at camp. During
these hours, I can get a break.

Chronic Boss Collective Launch Party


Then, last week, I attended an incredible event to support my friend as a founding member of
The Chronic Boss Collective. I had no idea what to expect at the launch celebration of this
new organization, but I wanted to be there for her. And, oh my gosh, I am so glad I was
there.


I was surrounded by a roomful of strong, driven, creative women in business who also manage
chronic illness and chronic pain–- physical, emotional, and mental pain–- every, single,
day. Women with multiple medical issues. Women who were close to death because of their
medical conditions. I do not even pretend to imagine what they have gone through to get to
today. That’s the Chronic part.


Now, the Boss part. The Chronic Boss Collective is “a membership for businesswomen living
with chronic conditions.” They are ambitious career women who are motivated to be successful
in business without neglecting their health. They strive for excellence in the midst of constant
reminders that their bodies, minds, and souls require more than typical attention 24/7. It’s
something that will always be on their minds, even when it’s pushed to the back corner so they
can focus on the other important pieces of their lives. These women have found each
other, and they have created a community. What an incredibly unique and supportive space to
be in!


I was moved, and humbled, by these women. How do they do it? I imagine, they just do.

Eye-opening perspective


How incredibly fortunate I am to be healthy enough to take care of my disabled child, to run a
business, to do things that make me feel happy and fulfilled, without worrying about how I will
feel today, or what I will or won’t be able to accomplish.

I see the ads on TV for countless medications for chronic conditions. I never really gave them
much thought, though, because I don’t have to. Well, last night, during the barrage of
commercials for treatments and cures, I paid attention. Each ad gave me pause to really think
about the people who need these medications in order to function and make the most of their
lives. The actors portray people “living their best lives,” happy, celebrating, and having fun. But
for the first time, I tried to picture the struggles, pain, and fear that take over their lives, even
if their conditions are under control. I can’t get it out of my mind.


So I am sharing this invaluable resource. If you or someone you know (as the ads always say)
is a Chronic Boss, there is a community for you. You are not alone. You can live your best life
with chronic conditions.


As the Chronic Boss Collective shouts: “DREAM BIG. PRIORITIZE HEALTH. NO TRADE-
OFFS.”


I met some really impressive and motivating women at the event, and I truly hope to collaborate
with some of them, just to spend a little time in their universe. If you are interested in this
community, or are a part of this community, I would love to connect with you!

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