Welcome to “How to Go to the Doctor,” our twice-monthly advice column started by Eva Hagberg Fisher, and inherited by Jackie Shea: actress, wellness advocate, and writer of the blog, Too Sick and Naked, the “hilarious” stories out of her chronically ill and traumatic life dealing with Lyme disease, immune disorders, and PTSD.
Dear Jackie, What is the appropriate amount of sharing when talking about your illness?
When I was a teenager, I took grand stands on many trivial platforms. I was highly opinionated about things like the power of nudity, the female beatniks being far superior to the male beatniks, film photography being superior to digital, and about my distaste for all artists who “sold- out” to commercial work. Today, I love my digital camera and do commercials all of the time because, a decade later, I’m a little wiser and also I care about money. So bring on the digital media and the commercials, I have checks to cash and rent to pay. I was young and—well—“new.” But there’s one opinion I birthed in that era that I still stand behind: The word appropriate—and its counterpart, inappropriate—can go right ahead and be deleted from the dictionary for all I care. They have no place in my vocabulary. They’re judgmental words—insensitive to the human experience—and they are entirely subjective words. Everyone has a different idea of what is “appropriate” and other people’s opinions can also get tossed aside for the purpose of healing. Being called inappropriate can feel shaming. Sick or not, shame spirals are destructive. But when we are sick, shame spirals can seriously affect our lives—leaving us physically debilitated. Healing is just as much a mental/emotional battle as it is a physical one, so we must be rid of shame as well as other people’s opinions of us. On the treacherous healing journey, you will travel slower, and it will take longer to reach your destination if you’re walking around carrying everyone else’s baggage. It’s YOU time.
If you ask me (which you did), you “can” share as much as you want about your illness—wherever and however you want. You call the shots. If you want to post on Facebook about how ill you feel everyday, then have at it. If you want to talk about your illness and only about your illness all day, everyday to friends, colleagues, family and your partner then go for it. No judgment here! BUT, I can also advise you that it may not be long-term effective to go that route. You will likely end up angry. Anger leads to isolating yourself and isolation leads to depression, which leads to less inspiration to do anything about your illness, which can lead to all sorts of nasty twists and turns that I, for one, DID NOT feel like taking. But we have to share! Sharing IS (or can be) very healing and necessary. What I slowly learned how to do was share in a productive way. That’s what I think your question is really getting at, and it’s a phenomenal question—how to productively share about illness. In fact, learning how to share in a way that benefitted me, and sometimes those around me, played a huge part in my recovery.
My first instinct when I got sick was to pretend nothing was wrong: I got antibiotics, sported some denial, and pushed through everyday. I didn’t want people to know I was sick. I considered myself tough and highly capable and healthy, even! Not to mention that I’m an actress living in LA, and I was terrified of what it would do to me professionally. Isn’t a sick person so undesirable? I sought to protect my image. I also desperately wanted to hold it together because I didn’t think I had the room to fall apart. Then I got sicker. And sicker. And sicker. In an attempt to hold it together, I unraveled—fiercely. And it was the best thing that could have happened. Denial wasn’t going to get me anywhere. The unraveling was necessary, albeit messy.
When I finally started sharing, I shared in all of the wrong places. For me, that was my family. I wanted them to pay attention. I shared and over-shared with them in an attempt to receive love and help. It never worked. My family couldn’t do anything. In fact going to them was hurtful—for the most part, bearing only pain; a renewed sense of abandonment. I disappeared from social media and felt completely isolated. I just so happen to be a person with an overabundance of loving friends, but even the majority of them didn’t know how to help me. One of my closest friends said in a moment of frustration, “I have no experience with this, I think you need to call people who have had Lyme disease or know what it is to be sick.” She gave me the name and number of an acquaintance that she knew had recovered from Lyme. I called immediately. That was the best advice I could have gotten. Reaching out to someone who understood—someone who had both compassion AND tools for how to recover—left me feeling heard, uplifted and hopeful. It’s the same for anything we go through in life—it’s always most productive to go to people who have experience with what you’re going through. Multiple people with illnesses came forward to help me. Eva Fisher, the former columnist, has been one of my main sources of guidance and love. We have had periods of daily sharing about our issues, reminding each other to rest, drink water, and ventilate the house like crazy when having an allergic reaction. We were for each other what no one else could be—no one who wasn’t sick. But even with such a strong network of women who understood the plight of illness, I needed more. I found a therapist, and I shared my heart out twice a week in a room that existed solely for people to openly share in. I needed that space, that freedom.
But then I was hit with the biggest test—the GRE in productive sharing, the place we are each held under most scrutiny: Social Media.
I had gotten so ill and there was no chance of recovery without a lot more money which meant doing a big fundraiser. I had to be OK with vulnerability on social media or I wouldn’t be able to raise money. In the place that was made for the sparkly pretend, for romantic-comedy-beauty, the place that seemed scariest to lean into the darker truths, I had to be honest and seemingly defective. I had to be human. I chose to lean in. I needed to, I needed the money. So, up went pictures of too-skinny me with IV’s in my arm and up went all of the sadness I was facing and all of the debt I was in. I shared ALL of it. I negotiated with myself by ending almost every update with something positive and uplifting (even though I often felt nothing of the kind) because I needed to remain in tact in some way. The money was raised, and I got so much better. And, I was met with a tremendous amount of love and support. In fact, I felt inspired to be a more loving person in the world based on others’ reactions to my illness. The sharing, the honesty, was incredibly healing.
Shockingly, I decided that even as I got well, it might be for the greatest good if I kept sharing. It was funny because for two years I had waited to get well so I could leave Lyme disease behind me and go back to my life—my normal life— but as I started to get well, I couldn’t leave Lyme disease behind, it was and is a part of me/my history. I was compelled to share my story, to help others and to inspire. And further, in an act of great self-love, I wanted to stand proud of whatever struggles I had faced—no matter how it makes me “look.” I had so many judgments wrapped up in illness, but leaning into it became my power. Last month, I actually booked an acting job because the casting director was fascinated with my story of healing from Lyme disease—sharing is powerful.
So share. But share in a way that benefits you. It might take time to determine what is productive sharing and what isn’t. Someone once told me to “go where the love is.” If I could give you one simple rule to follow, it would be that: Go where the love is.
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