When Your New Diagnosis Has You Questioning Who You Are Now

“Who am I?” It’s a question that seems to rattle through the minds of most 20-somethings. I have many friends who go on “Eat, Pray, Love”-type journeys through the world hoping to discover who they truly are and what their purpose is here on Earth. Questioning your identity and purpose seems to be a pretty well accepted rite of passage. But what happens when you think you’ve found who you are and what your purpose is, and then everything changes?

In my late 20s, I found myself on a journey of self-discovery. I spent two years working through anxieties, challenging my low self-image, and healing old wounds from the past. I learned to accept and love myself for who I was: loud, energetic, boisterous, friendly, optimistic, nerdy, goofy, talkative, and passionate about life. I accepted my old battle scars and found a way to break free from negative forces that had been feeding into my self-loathing. My daughter was only 2, and yet I saw so much of myself in her as well, and I wanted to model to her the ability to love and accept oneself. Loving her helped me to love myself.

And then, one day, everything changed.

I went to the ER one day with violent tremors, chest tightness, blurred vision, mental confusion, nausea, and feeling like I was going to pass out at any moment. Since that day, I have been diagnosed with postular orthostatic tachycardia syndrome (POTS) and Ehlers-Danlos sydrome – hypermobility (HEDS). I quickly learned that I’d had HEDS my entire life but had never been diagnosed, my symptoms always being dismissed as something else. POTS, however, was new to me. It hit me hard and has yet to back off. Even with medication and lifestyle changes, I still struggle every day to complete a fraction of what I used to be able to do.

At first, I denied that my diagnoses would affect my identity at all. I held on to the hope that this was temporary, a fleeting illness that would leave as suddenly as it appeared. Now, almost a year after this began, I am being told that it is most likely something I will live with for the rest of my life. I still have not fully accepted this fact, and may never truly accept it, but part of the process of acceptance for me has me yet again asking the question “who am I?” and “what is my purpose?”

Before becoming ill, I would dance and sing wherever I was; at the grocery store, at work, standing in line at Starbucks, walking up and down the stairs at home. My daughter and I would have dance parties daily where we would jam out to her favorite songs. I would sing her lullabies (well, if “Let it Go” counts as a lullaby) every night. I directed and acted in plays, something that I had been doing since I was a little kid. I would play games with my middle school students that had us running around the classroom together. All of these things seemed so integral to who I was, and I can’t do any of them now.

I find myself often feeling lost, confused, angry. How did I get here? Why did this happen? What will my future be like now? I felt that I had just finally reached a place of happiness and purpose, and now I had been thrust out into the abyss of chaos. There are days when I feel like I am falling, spinning, and reeling through space and I can’t get my feet back on the ground. I lost a person I truly loved, myself, and I am not sure if I will ever find her again.

Now, I am tasked with the job of trying to find myself again. Well, maybe that’s not entirely accurate. It’s more like I am rebuilding myself. My illnesses tore down and destroyed so many of the building blocks that made me who I was before. I’m now searching for new building blocks as well as sifting through the wreckage to see which blocks may have survived.

I am still a mother, significant other, teacher, daughter, sister, mentor, and artist. The way I fulfill these roles has changed greatly, but they are still part of who I am. I have not lost that. I cannot sing, dance, and act onstage, all things I’ve spent my whole life doing, but I can write and maybe even find new ways to express myself. Due to the fatigue, I am not as energetic or boisterous as I used to be. However, I am still friendly, goofy, nerdy, passionate and optimistic. I can’t be as social as I want to be or as active in the world as I once was, but I am still here. I am still trying. And I still matter.

There are times when I will look back at what I used to be capable of and I end up feeling so small in comparison. Or I will watch others doing the things I wish I could be doing and feel jealous or sorry for myself. But I try to instead look at what things I do still have as well as what things I can still do. I get excited now by little accomplishments that I never would have thought twice about before, such as: sweeping the floors, a day without a headache, walking without assistance, surviving a social outing, a week without a doctor’s visit, etc. I feel the “old me” deep down inside screaming for the chance to dance, sing, and be the life of the party again. But then I think that maybe being able to do those things weren’t as important to my identity as I thought they were.

Maybe I haven’t really lost what made me “me” after all. Maybe all of those actions and activities aren’t as important as my attitude and spirit. Maybe in the mix of all the things I’ve lost, I have gained quite a few things as well. I’d like to think that through all this I have become a little stronger, a little more understanding, a little more educated, a little more emphatic, and a little wiser. So, the challenge may not be in trying to find or redefine who I am. The real challenge is in finding how to hold onto who I am through it all.