Invisible Illness: Heartbreak, Healing and Being Enough

I’ve been sick for nearly a decade. But it’s only been in the past two months, since I have finally recovered, that I have come to understand the depth of the ramifications of having an invisible illness. So to all those who suffer from invisible pain, I hope that this makes you feel a little less alone.

Nine and a half years ago I had a baby and everything changed. Not just that magical mixture of sleep deprivation and overwhelming love that all tiny humans inflict on their unsuspecting parents. What I felt was … different.

It started with things like extreme fatigue and a painful distended belly after every meal for the first two years of my child’s life. When I spoke to my doctors about it they smiled that condescending smile and explained that yes, having a baby is life changing in all sorts of ways. It’s just “your new normal” I was told. Try avoiding broccoli and onions. Maybe the baby doesn’t like them. So I did. I eventually eliminated all sugar, gluten and dairy products. I exercised, I went to bed at a reasonable time, I drank lots of water, etc, etc, etc. I did all the things I was supposed to do. And every time I made a big change it would help briefly and then it would slide back and I would dread all food because I had no idea why it made me feel so terrible.

After two years, when I was no longer breastfeeding, it seemed like I was getting a handle on it. The stomach pains happened less often and, while I still didn’t feel like myself in some indefinable way, I tried to adapt to this new version of life. But it was hard. I got sick more frequently than ever before. I gained weight even when I ate well and exercised daily. I felt short-tempered. I wasn’t easily excited. I couldn’t put a finger on it, but I just didn’t feel happy. For years. But I was determined to just power through because it was all in my head, right?

Being the analytical nerd that I am I laid it out for myself in point form. I had a healthy happy baby, a wonderful husband, a creative career I loved. Shouldn’t that be enough? It wasn’t. So I got even more proactive. I did gratitude exercises and volunteered to help others. I made a point to reconnect with old friends and take more trips. I published two novels. I found my tribe of amazing women. I went to therapy to heal old wounds. I meditated. I did everything I could think of to shift my perspective, to make this feeling go away.

But finally, about 3 years ago I noticed that I could no longer feel joy. Everything took on a dark and heavy tone. I could feel the negative emotions, but I no longer got that lingering feeling of lightness or excitement from anything positive. I justified these new emotional symptoms. I told myself I was ungrateful for my beautiful life. I just didn’t have the disposition to enjoy many aspects of motherhood. Maybe I was going through a midlife crisis. Maybe it was my relationship. Maybe it was that life doesn’t look or feel how I thought it would.

And I knew it was taking a toll on my marriage. I could see the disappointment  and hurt in my husband’s eyes. I could feel the disconnect from my son even while playing in the ocean together. I had always been an optimistic person by nature and I heard the constant negativity coming out of my mouth but I couldn’t seem to stop it. There was a point where I recognized that, while I wasn’t entertaining suicidal ideation, I felt no attachment to living. I genuinely didn’t care if I lived or died.

Eventually, it did lead to the end of my marriage. There were things that, had I been able to experience the full spectrum of emotions, might have taken twenty years to bubble up to the surface or maybe never would have. Instead, it all came out. And it was hard. And good. And confusing. And heartbreaking. We both tried as hard and as long as we could, but in the end, we decided that it was better for us to be apart. I am deeply grateful for his continued support, our ability to co-parent, and for the enduring friendship that was always the basis of our relationship.

Apparently it took my whole world blowing up, but finally, it happened. I accidentally healed my illness. Well, it was actually thanks to my acupuncturist that I came across what turned out to be the solution.

She had encouraged me to do her Eating Cleanse program, which is specifically designed to decrease inflammation in the body. By eating foods that are scientifically proven to reduce inflammation and avoiding foods that add to it, it is essentially an oil change for the body.

I was skeptical, but willing to try it. Nothing, in nearly a decade, had worked at all. The first week without coffee did nothing to assuage my doubts. I felt tired and grumpy and resented that I had agreed to do three weeks without caffeine. Then, literally from one day to the next—on day 10—I felt like myself. Suddenly the world opened up before me and I cried tears of relief and … joy. I could feel joy!

Multiple friends commented that I was glowing. Strangers smiled at me at the store. My skin looked amazing. I woke up feeling refreshed and ready for my day. I delighted in time with my son. I felt more engaged in my conversations. And, most significantly, I felt a lightness of being that I hadn’t been able to feel for almost ten years. It was the single most transformative day of my life.

In the two months since that day I have been trying to make sense of it all. Trying to reorient myself in this new reality. To be kinder to myself—knowing now that I wasn’t ungrateful, I was sick. Appreciating the fact that I didn’t give up. Grieving the things I had to give up. And most of all, appreciating that, however long it took, I get to be me again.

It was easy and seemed so natural to blame myself for not being enough. Not being committed enough. Not being nurturing enough. Not being grateful enough. Not being affectionate or loving or happy enough. Because that’s the thing about invisible illness, you can’t just put a cast on it and give it six weeks to heal. When you are the only one who knows the extent of your pain you are also your only advocate. And that is especially hard and isolating when you’re physically and emotionally exhausted and what you need most is empathy from yourself and others.

Today I am grateful that I didn’t give up. I am proud of myself for continuing to try despite my hopelessness. I am proud of myself for holding onto the knowledge that how I felt in my illness wasn’t the real me. I am proud of myself for challenging every single norm and boundary and expectation. I now know my full self in a way I never would have gotten to before. Life isn’t what I thought it would be, but honestly, it’s better than I imagined. My capacity for empathy has increased boundlessly. I am no longer afraid. I am no longer ashamed. I am me. And I am enough. Even for myself.