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Has Chronic Illness Robbed You of Your Identity?

In the past I struggled a lot with feeling like I lost my identity because of chronic illness. Every time my health goes through a major change (for the worse) the limitations that come from that are upsetting because I can no longer participate in many things that my identity was formed from. I am not who I used to be but I don’t know who I am now. 

I felt lost. 

How We See Ourselves: Developing our Identity

There is a lot to talk about when it comes to what identity is and how it is formed, but to put it simply: identity has to do with a person’s mental representation of who he or she is. As an adolescent I would have used some of these words to describe my identity:

  • older sister
  • student
  • elite dancer
  • girlfriend
  • cake decorator
  • competitive
  • perfectionist
  • athlete
  • funny

I probably wouldn’t include being a patient or having chronic illness even though those things were also a part of my life. My identity involved different roles I filled and my most prominent of character traits. 

The Old Me

If you’ve read my Crohn’s Disease story or my Rare Disease Story then you know that I have been sick practically since the day I was born. I spent the first decade of my life in and out of the hospital with each year bringing at least 1 hospitalization. When I wasn’t in the hospital there were many days spent laying on the couch watching The Price Is Right when I should have been at school but was too sick to go.

A Tiny

Even though I was often sick I also had many extended periods of time where I had good days. When life gave me a break from illness I was insanely driven and competitive.

I was put into dance lessons at age 3 and from my very first dance class my teacher paid special attention to me because she thought I had exceptional talent. I enjoyed the positive attention and from then on it was my goal to be the best at dancing; nothing less would do. I didn’t stop dancing for over 20 years.

One of many childhood hospital stays
Dressed in a leotard and tights with hair in a bun at age 4
After getting out of the hospital and determined to get to dance; the place I loved to be at most. Hospital band still on.

Chronic pain and symptoms can wear a person down and when you start losing your quality of life again it’s much more difficult to accept things the way they are.

Dancing to Escape

Growing up there were many things about my life that were not easy but when I was dancing I could get lost in the music and choreography and just escape. I loved having the ability to express myself through movement when I often lacked words or when I could not use my words to say what was going on. Dancing helped me deal with many difficult situations.

I was really good at it and enjoyed how different styles of dance and different types of music made me feel different things. A funky jazz or hip hop piece with great up-tempo music was super fun and a killer workout.

The seriousness and strictness of ballet with all of it’s rules was something my perfectionist Type A personality secretly loved even though it almost felt like torture. A contemporary or lyrical piece was a fantastic way to let out the darkness I so often felt inside of me. Being on stage gave me this high that nothing else in life could. I felt alive.

I.WAS.OBSESSED.

I was so obsessed with dance and being the best at it that I forced myself to go even when I wasn’t doing well. I’ve thrown up on the dance floor (unintentional and

disgusting, I know) and cleaned it up and kept going. I fought through pain and nausea and did my best to make it through without anyone knowing. Nothing was going to keep me from dancing! It was my first love.

The only time I missed dance was when I was in the hospital or just way to sick to be there. I started teaching dance lessons when I was 17 and then it was my goal to make the best dancers. And so I did. My students won top scores at regional and national dance competitions and I was winning choreography awards all before I turned 20. The scores we were getting were higher than our studio had ever gotten before and I was really proud of that. 

A Perfectionist

I wasn’t just driven in dance. If I wanted to improve my body I would workout harder. My friend Steve who was my workout buddy will attest to this – there were guys in the gym who would stop and watch me because they couldn’t believe the things I was able to do there, especially being as tiny as I was.  

If I wanted to get a 4.0 in school I would get one. If I wanted to be the best at work, I would be the best. I worked at the same company for over 9 years. It was a union job and I had a full time contract and signed a bid for lead cake decorator as soon as I was done with high school. By the time I was 19 years old I was in college with a 3.9 GPA, worked full time in the bakery and had my second job as a dance teacher/choreographer. I taught 10 dance classes a week and had 2 different competitive dance groups in my charge in addition to my recreational dancers. I was also still taking my own dance classes and competing during the spring. 

me and my friend on my family's boat. I am fit and muscular
Even though I was small I had a lot of muscle and was very strong. I spent a lot of time at the gym.

I had been kicked out of my home in my late teens because the bathroom was messy (long story but you can read about some of that in my Crohn’s disease story if you want) so I was living on my own in my own apartment and was fully capable of supporting myself.

The problem with being the kind of perfectionist that I was is that it was extremely unhealthy. I put an immense amount of pressure on myself to be the best at everything and I had a really difficult time when I felt like I had failed which was almost always. No matter what my successes were I could not see them; I could only see what I didn’t do “right.”  I was also a chronic ‘yes person’ and would say yes to everyone because I never wanted to let anyone down. I really wasn’t happy even though I had so many great things going for me.

And Then My Health Worsened

On this day I went to work feeling awful but knowing I needed to be there. Unfortunately had to be taken to the hospital a couple hours into my shift and I was admitted.

Just like during my early childhood my life became a series of being in and out of the hospital again. The hard part about this when you’re a young adult is that missing college and having to call in to work affects your life a lot more than being sick in elementary school. Missing work caused me to lose a few jobs and reevaluate the career goals I had for my future. Missing out on college because of hospitalizations and surgeries forced me to take extensive leaves and dragged out what should have taken a few years. Eventually I had to come to terms with the fact that the degree I was pursuing was unrealistic for the life that I had currently because of my health.

Having my health decline on me again was very challenging. I didn’t know what it meant to rest, to not work, to be still.  I hadn’t done that for a long time. So when my disease became more active and severe

again I freaked out because I lost myself.

I hated it because I couldn’t control it and I was used to controlling everything. I had to quit college and realize that I couldn’t even do the job that I was going to school for. I was extremely sick and as a result my life was turned up-side-down.

The New Me

I have been in and out of the hospital every year now since those early college years. I can’t imagine having the energy to do what I used to do. To take dance lessons, teach dance lessons, and work full time. Go to school, workout, and have a social life. There is just no way that can be a reality of mine right now even though I try my hardest to get back to that.

I have a new job that is different from what I originally planned on doing but it suits my health better and I love what I do. I no longer say yes to everyone. I say no and I am perfectly okay with that.

I’ve learned to be okay with being average and not perfect but it has taken me a long time to work on that part of myself and I still have to practice going easy on myself every day. 

I have had to lose almost everything about my old identity to gain something better. My health took away my old jobs, my former life goals, and the muscle and flexibility I worked so hard for as a dancer. It took my health insurance, school, relationships, and my good credit score. It took a lot but it gave me a lot, too.

The challenges I’ve faced because of my chronic illnesses have given me a strength I never knew I had in me. My declining health gave me the ability to appreciate things I used to take for granted. 

Me hugging my German Shepherd dog outside on a fall day

I have learned that life can be okay even when you’re not perfect and that I can get through almost anything. My health led me to a new career which came with a circle of friends that are the closest friends I have ever had in my life. My health has given me a voice and made me an advocate for other patients. It has given me all of you who help and support me. 

Acceptance

I am a lot happier now than I was in the past. The girl I used to be was never happy. I was never satisfied with my accomplishments no matter how successful I became. I never had enough money no matter how much money I earned. Every day I was telling myself I wasn’t good enough and I never took time to delight in what I had around me. 

Identity is never "final" and continues to develop through the lifespan. Knowing ones identity accurately increases self-esteem and reduces depression and anxiety. When people are doing what they think they should be doing, they are happy.

Shahram Heshmat, Ph.D
With some of my friends at Camp Oasis

Accepting my new life and the new me hasn’t been an easy thing. I sound really positive today but if I wrote this a month from now it could be different depending on what is going on with my health. Chronic pain and other symptoms can wear a person down and when you start losing your quality of life again it’s much more difficult to accept things the way they are. For me acceptance is an ongoing thing but today I feel positive because of the things my chronic illnesses have given me. 

I no longer fret over little things that don’t matter because I know what it’s like to lose a lot so if it’s not an actual big deal then I don’t let it get me down. Or I try, at least. 

We are not given a manual when we are given a diagnosis to tell us how to handle things. There are many times that I still get upset and angry about being sick. I throw a pity party and wish that my life and my body were the way they used to be before I was this sick; when I was the old me. I think about how unfair it feels and I cry but then I have to get over it. I accept what is and I decide to make the best of my current situation in life. Even though I have lost a lot because of my illness I feel like I have gained a lot too.  

This is the new me. 

Sara

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