Your Eczema Journey, Your Choice
Last updated: September 2023
I came across a quote today that is quite powerful. Reflecting, it truly hit me that this skin journey we are on may be something we can share in empathy, but it doesn't always have to be something we share.
"You don't need to carry everything you have been through. Some of it is meant to be left behind."
I wish I could take credit for that, but I have no idea who said it. I am just grateful it came to me today.
Which way do I go?
Because eczema and TSW are such physical diseases, ones that many can verbally comment on, it is natural for it to be hard to process. It is also difficult, in and of itself, to figure out. There never seems to be a one size fits all answer. We all can feel quite lost some days, drowned even.
So, when it comes to each of our individual journeys, we must all reflect on what is best for us: Do I raise my voice in awareness, or do I keep my journey to myself?
I can think of reasons for both. They each come with their load, and they each come with their joys.
Choosing eczema advocacy
Finding purpose in the pain and itch
When I was in the beginning months of topical steroid withdrawal, it felt really lonely. The pain you are in, day in and day out can make anyone feel insane. I knew there had to be more than that pain, more than that isolation. And when I pressed record on my camera, that desolation turned into destiny. I began creating art and purpose out of my pain. Sharing allowed me to help others as well as myself. I had a reason to get up in the morning. There was no more guessing about what I should be doing in those times of struggle. There was an audience of lost souls, just like mine, looking for guidance, a laugh, or just a voice that sounded like their own.
Paying it forward
I bet I could guarantee that, at some point in your skin journey, you've reached out to ask for help. And I could also guarantee that some of that help did not come from a doctor. It came for free. Another eczema warrior perhaps pulled you out of despair. Maybe they lent you a recipe for a balm or suggestion for a bathing regimen. Either way, our community has been based on sharing and passing on information for years. After reaching out and receiving free advice, it feels so good that I can do the same for others.
Gaining a depth of knowledge
When you advocate, that means you are constantly diving into conversations and research — your voice matters. You spend time and energy looking into relevant information on eczema and how to better help your community. In this digging, you end up helping yourself. I've networked with so many amazing individuals and have gained incredible opportunities to better myself while also being an advocate. It's true: When you give, you are also giving to yourself. That knowledge and those connections are priceless. It is how I created my TSW documentary, Preventable.
Sometimes, I wonder if my healing would be faster (or of better quality) if I had kept to my own lane. Staying silent and fighting for your own healing can be essential for some people. It can mean sanity. Your journey is yours. No one should feel obligated to share or be a voice if it means losing out on themselves. Privacy is crucial in the exhaustion. So, if that is what you need, keep it. Hold on to that precious piece of you.
We don't owe anyone a thing
Even if you've reached out for help, that doesn't mean you owe anyone anything. If an advocate wished to offer free advice, they did it out of love, not expectation. As a human being, you don't owe this community an ounce of your peace or sanity. If you wish to keep all of your strength, time, and energy for yourself, do it! No justification is needed. I know I have to set boundaries for myself, or else I'd be taken advantage of weekly. Boundaries are healthy, and people must respect them, especially when all of this work and help are free of charge.
Staying drama free
If you are going to be an advocate, believe me, there will always be some sort of drama. Now, that doesn't mean advocates have to engage with it, but opinions are flying around, and emotions can run high, so it's out there. If you know that an environment like that is not for you, there is no shame in sticking to your healing lane. Sometimes, I just turn a blind eye to some of it because that is not something I ever wish to tolerate, but it's definitely there to be averted. It can be tiring to dodge.
The choice is yours
Whatever your heart is telling you, follow it. If you feel like advocacy is calling you, answer the call. If you feel that being a voice is too much, sit down, you beautiful soul, and heal in peace. Always make decisions based on what is meant for you.
What type of infection do you deal with most often?