I’m excited to begin taking care of me — finally

I’m 41 and a half years old, and I started therapy for the first time two weeks ago — real, consistent counseling that I plan to continue indefinitely.

After our first son, Gabe, was stillborn — likely because of epidermolysis bullosa (EB), we suspect — and then Jonah was born less than a year later with the disease, I went to one or two therapy sessions. But how do you have time to take care of yourself when you have one child who’s died and one for whom you’re doing all you can to keep alive?

And could anyone understand what I was going through, anyway?

At the time, therapy also cost $50 a session, even on a sliding scale. And with the birth of a medically fragile child who needed my full-time care, I found myself immediately unemployed and our family one salary down. We didn’t have an extra $200 a month. Therapy and self-care are a luxury and a privilege. And most times, those who need it most are the ones who find it completely inaccessible, for one reason or another.

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I knew I needed it. I hadn’t had the chance to grieve Gabe before I became unexpectedly pregnant with Jonah. We were still reeling from the shock and devastation of losing a child at 37 weeks of pregnancy for no known reason. Then our second son was born missing most of his skin, looking like he’d been set on fire, screaming in agony. The doctors told me he probably wouldn’t make it to his first birthday.

Yeah, I’d say I needed therapy.

But knowing something and being able to act on it are very different. I had no time, no money, and no emotional capacity to unpack any of my own stuff. My days were spent helping Jonah survive, and only barely surviving myself. I was doing daily, three-hour bandage changes; steaming, blending, and freezing vegetables and other foods for his G-tube; feeding him through the tube at least three times a day; hosting appointments at home for occupational and feeding therapy; taking him to varied doctor appointments; and making countless trips to the pharmacy. The last thing I had time to worry about was the state of my mental health.

Working toward a healthier me

Now 14 years have passed. Jonah’s older, and things are easier. Or maybe not easier, but hard in a different way. I have enough time, money, and nursing help now. I also realize that with each day, I’m one step closer to running out of time to work on me.

I don’t mean that to sound fatalistic, just realistic. If I don’t start to take care of me now, when will I? What will life look like at 55 or 72? It seems to me that the older I get, the harder it’ll be to get started. And the longer I wait to get started, the less time I’ll have to enjoy being the healthiest version of me.

I fetal-positioned it for a while. But recently, we sought out a therapist for Gideon, our youngest son, who battles severe ADHD. Once we were in the door with the counseling center and I had the email address of the intake staffer, I had no excuse. It was as simple as sending an email.

So I reached out. I asked to be treated by a mother and, preferably, someone who specialized in special needs and grief. “I have the one for you,” the intake staffer responded, “but she’s only virtual.” I wasn’t sure I’d be able to connect as well with someone through a screen, but I said yes anyway. I had nothing to lose.

In the first 60 seconds of the session, my therapist said, “Well, I’ve read over your child and adult trauma history and all your forms. You’ve been through a lot, Patrice.” As she said it, with such an empathetic look in her eye, I burst into tears.

Thankfully, at that very moment my inconsistent work internet went out and the call dropped. By the time I logged back on, I’d gotten myself together. Of course, I apologized. Of course, she told me there was absolutely no need to apologize. It was an amazing session. I think I’m in love with therapy.

Patrice, excited to begin the journey to a healthier version of herself. (Courtesy of Patrice Williams)

I do recognize that it’s a privilege to have the money, time, and capacity to do talk therapy. But I want to encourage you. If you’re someone who has those pieces in place and you’ve been thinking about it, please don’t wait to start. Your family deserves the best version of you. But more importantly, you deserve the best version of you. Because you are pretty amazing. And today is a pretty good day to start.

Note: Epidermolysis Bullosa News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.