When I founded The Wellness Boulevard, I wanted to help others live and thrive with autoimmune disease or chronic illness. I wanted to talk about eating intuitively AND for medical restrictions. About how we could follow a healing diet without feeling restricted or deprived. I wanted to share how exercise could play a role in feeling good. About how it's important to find that optimal place of incorporating both professional care and natural or self-care.
All in all, I founded The Wellness Boulevard to help address what it might look like to live and thrive with autoimmune disease or chronic illness... to feel better and optimize the chance of healing.
But as I started building this platform, I noticed a problem pop up.
I wanted to talk to folks who were living with autoimmune disease... but only the ones who weren't defined by their diagnosis. The ones who rarely talked about their struggles, and kept trucking along like things were no big deal.
I didn't necessarily want to use words like chronic, or pain, or illness. I wanted to reach the "warriors" -- not the "sick ones".
I wanted to share blog posts about my experience with Takayasus Arteritis (a form of vasculitis characterized by inflammation of the blood vessels), but I was nervous to claim I had chronic illness or experienced any kind of chronic pain as a result.
Because I didn't want others to think I was using my diagnosis as an excuse.
If you're recognizing a pattern here, I'll cut to the chase.
I felt fine calling out an autoimmune disease.
I didn't feel fine talking about "chronic" anything.
I felt fine sharing about my diagnosis and what I've accomplished in the aftermath.
I didn't feel fine sharing about things I had to trade off or not do.
I wanted to talk about health and wellness... but only so long as I continued to look "strong", "tough", and "impressive" for what I've been able to do with the cards I've been dealt.
As soon as it came time to get vulnerable -- to write a post about things people with chronic illness would rather not hear or talk about my "life lost" and who I used to be before the diagnosis -- I froze.
Apparently, I felt it was "okay" to be sick... but only when I was thriving.
Only when having an autoimmune disease heightened what I've accomplished.
Only when I'm sharing the experiences I've made happen in spite of illness.
Only when "being sick" makes me look good, stand out in this positive light, or have a "claim to fame".
I thought it was "okay" to be sick... except when it made me vulnerable.
When there was weakness attached.
And I couldn't just "get over it".
When I'd force myself to rest rather than push.
Or stop working at 5PM even though entrepreneurs are supposed to work all night.
When I'd turn down plans with my husband because I didn't have the energy.
It felt "okay" to be sick... but only when I wasn't embarrassed.
When I wasn't afraid. Or disappointed in myself. When I wasn't questioning whether or not I'm enough.
Enough for my husband.
Enough for my clients.
Enough for my parents.
Enough for my (future) kids.
Enough for my friends.
Enough for myself.
It's "okay" to be sick... but only when I'm not questioning my strength.
Because if only I was X, or if only I did Y, or if only I tried Z.... I could overcome this illness sooner. I could have prevented this to begin with. I would not have deserved this pain at all. I would not have let this happen.
It's "okay" to be sick... but only when I am not actually sick.
Only when I don't have to change my life to accommodate for how I feel.
Only when I don't have to inconvenience someone else.
It's "okay" to be sick... but only when I'm not feeling ashamed of my pain.
For altering plans.
Or requiring "special" treatment.
For asking others to work around my needs.
Once I realized this pattern, I noticed not only the stigma that exists around living with autoimmune disease or chronic illness (especially invisible illness), but I saw myself holding on real tight and perpetuating a stigma I didn't want.
I was acting as if we can only speak out when we're sharing about how to live or thrive in the face of pain. (Or worse -- only when we've eradicated that pain.)
While I agree it's a beautiful thing to experience joy in the face of pain, to work towards feeling as best as we can inside our own bodies, we all still need a safe space to get there. We need time to feel the injustice. Time to bring to light the pain. Because when we push it down, when we berate ourselves for not bucking up or "man-ing" up or handling it well from the get go, we push down our capacity for love as well.
It's okay to be sick... and also to be tired.
Tired of dealing with illness -- and tired of pretending. Pretending that this isn't an undeserved pain from a thing we cannot control. Pretending that we're unique or different or the only ones feeling this way. Pretending that we all haven't felt this shame at one point or another. The shame that comes from suffering.
Because while my suffering is often invisible -- autoimmune disease, anxiety, depression, chronic pain -- suffering comes in all forms of all shapes and sizes and hits all types of people.
Replace the word "sickness" above with your own suffering, big or small, and you may have felt, said, or thought what I've written at one point or another.
These were the cards we were dealt, but not the cards we asked for. While what we do with our hand matters greatly -- how we choose to approach it for the collective good is important -- we still need to ask ourselves whether this shame and stigma is doing more harm than good.
To ask ourselves whether we can extend grace and compassion to pains in life that we do not understand. Hands in life we can feel grateful not to have been dealt ourselves. We have to decide whether we believe people are generally doing the best they can with what they have -- and therefore whether we can rest in the faith that we, too, are doing the best we can with what we have.
Life doesn't start once we're healed. It doesn't begin when we're in remission. Or when we're no longer anxious about anything at anytime. It doesn't pick back up when we're "over it", when we've moved on, don't get triggered, or aren't suffering any longer.
Life begins now.
Our power is up for grabs today.
It's not dependent on a test result.
Or a doctor appointment.
Or a word such as "cured" or "healed".
We don't have to be fixed.
We're standing in our power NOW.
We can thrive AT THE SAME TIME.
You can be the warrior AND the sick one.
For more on this topic, consider joining The Wellness Boulevard and making your way to the class section. Once inside, check our the classes titled: (1) You are more than the sick one or a warrior and (2) The problem with being the perfect patient. Inside The Wellness Boulevard, we believe that the goal of wellness is to navigate uncertainty and the unexpected with a sense of comfort and grounded-ness that allows joy to flow even in the face of pain. Join us today for immediate access!