Living with a Chronic Illness and Finding your Identity

I used to be a different person. I used to feel vibrant and fun, I was professionally driven, and I saw myself as successful, growth oriented, a high-achiever and powerful.

I don’t work anymore due to my current health challenges. I live with chronic pain, fatigue and cognitive issues. So the things above that I used to see myself as, are mostly gone. Or at least how I derived them. The things I was able to do before that helped me feel vibrant I’m not able to do any more. I used to feel more light-hearted and now, there is a seriousness and grief I’m still working through. It doesn’t mean I don’t have fun or that I’m not fun. It means I don’t have that same sense of that definition.

So many days I’ve struggled with the question of ‘who am I?’ and ‘what is my purpose?’

Many who knew me before cancer would have said I was overly focused on work. All I did was work. I worked on vacations. I put off seeing a doctor to look at my tongue (which I now know had a tumor in it) even though I had pain for months because I just couldn’t see how that was more important than work. Ultimately, it is the reason I ended up as stage 3 and have the conditions I have today. I remember after one surgery, I was admitted in the hospital and I was pitching journalists. After one major surgery I tried to go on a trip to NYC for a trade show. I was taking oxycodone for the pain and was nauseous whenever I move around, but I thought if I could just get ready and into the cab to go to the airport I could make it. I managed to get ready and made my way down to the first floor of my apartment, and got outside just in time to throw up all over my shoes. And it hit me. What the fuck am I doing?

I changed after cancer in how I thought about work. What I was willing to trade, both in time and energy, but also in integrity. I stopped saying yes so quickly to unreasonable requests. I refused to work 80 hours a week, in a non-busy or non-launch time. I stopped letting others put me down. It was hard. And it was hard to feel the consequences of being so misaligned with many others in the workforce who functioned very much like the old me.

But even with those changes, work still defined me in many ways. I’m just now figuring out what it was about my job and career that was so fulfilling. And I’m trying to figure out how to create those things in the way my life is now.

I’m on the middle of a book called “Designing Your Life.” A good friend recommended it to me and so far it’s been really helpful in taking stock in my life. For example, you create a dashboard to evaluate how you feel about health, work, play and love. It helps you broadly define those categories and decide if the areas you are dissatisfied with are actionable or if they are gravity problems. Aka ones you can’t control. P.S. I highly recommend the book to anyone, even if you don’t have chronic illness. Most of you are walking zombies and not really designing your life, but at best reacting to it, and at worst getting dragged through it.

And this is where I think people with chronic illnesses stumble the most. We have a LOT of issues that are gravity issues. For example, I spend hours each week dealing with health insurance claim denials and appeals. And they go round and round, taking months to resolve one claim.

But there are also a lot of areas that are actionable. I realize I am extremely deficient in the play area. I’m prioritizing all the other things in my life (especially health and what I now consider work). So I’m not working on cultivating play. It’s not the stuff I used to do and consider play, but I’m redefining it.

I’m doing the emotional work and I’m making progress. I’m starting to enjoy the journey to redefine my life and redefine myself.

And I guess that’s the point of this post. When chronic illness hits you, you are forced to redefine yourself and it can be PAINFUL. It’s hard to accept that the old things about me that I loved and was so comfortable with may be gone. And now I have to figure out who I am now, beyond a patient.

So my big area of growth is to figure out what I liked about work and what I got out of it. I can then look for ways that are reachable for me now to achieve those. Mostly, I need to work on play. So I’m reading more books. I loooovvveeee books. I also am installing a ballet barre in our house. This is basically a life dream. I can’t dance like I could prior to the cervical dystonia and fibrosis issues, BUT basic ballet is amazing for stretching, strengthening and relaxation. It also allows me to go at a slow pace and do it at home. It is going to be so amazing for my physical and mental health. Plus, my daughter and I can do ballet together. Dreams do come true, even with chronic illness.

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