If It Feels Like Your Illness Has Taken Away Who You Are

I am embarrassed about who I am. That’s the truth.

I used to be a happy, outgoing, and energetic person. I had lots of friends, did a billion extra-curriculars and took so many credits that school advisers would shake their heads and sigh. I was that person hung out with anyone and everyone. I thrived on a magical energy that I woke up with every day – even after only three hours of sleep. I did plays and musicals, wrote music, did competitions, and still managed to succeed in pretty much everything I tried. I was at the top of the world in high school and college and thought that nothing could ever slow me down.

Then, when I was only 19, I started getting sick – really sick. Life seemed fuzzier and slower, but I kept pressing forward – believing that someday I would be better again. It became harder and harder. I gained weight, quit school, lost several jobs and became a sort of zombie wandering through life. My dreams were slowly crushed into pieces, as one by one, I had to let things go just to stay alive.

My days were made up of medication, doctor appointments, short working hours and sleep. I stopped hanging out, stopped going to things, and Netflix was what I spent my waking hours on. My family grew more and more worried about me. My parents tried to understand, but were frustrated with the lack of answers we got from doctors, and wondered if there was more wrong with me than my health. It felt like chronic illness robbed me of my identity slowly but surely. I was worn down more and more every day, and “just push[ing] through it” only made things worse.

My friends from high school and college, as they continued with life, started inviting me to the important events happening in their lives. There were wedding receptions, or homecomings from service in foreign countries, engagement parties, or graduations. Every time I received one, I grew more anxious. I attended a few but always left early after panic threatened to overwhelm me. I made excuses to decline their invites to parties and celebrations, and eventually stopped caring enough to respond at all.

One night I studied the invitation I had just received to attend the reception of one of my closest friends. I knew she would be devastated if I didn’t come, and I knew I needed to go. But again I felt the anxiety come over me as I thought about going – about having to smile, about answering everyone’s questions about my life, about pretending I was OK. I texted her and told her I was sick and couldn’t go.

The next few days I felt sick to my stomach. How had I so readily abandoned her? What was it that made me so unwilling to go, even when it was someone who I loved more than life itself, and someone I had promised I would be there for every event of her life?

I finally stumbled on the answer. Shame.

I was ashamed and embarrassed of who I was. I didn’t want to face the people who had known me as the happy, confident, vivacious girl I had been before. I didn’t want them to see me the way I was now – the empty, exhausted girl who had done nothing with her life. I didn’t want to answer their questions of where I worked, why I only did 20 hours a week, why I quit college, and why I wasn’t dating. I always imagined their eyes on me – judging me for the pounds I had gained, for the sadness in my eyes, for the lack of smiles and laughter.

I couldn’t do it. I couldn’t face their confusion, their judgment, or their pity. And so I locked myself away.

Even as I tried to come to terms with my new life, my new body, and my new goals, I was unable to come to terms with others seeing me in my new life, my new body, and with new goals. So many of my friends thought that I was bound to succeed, to become famous, and thought I was beautiful, smart, and that the sky was the limit for me. And I believed it completely – brimming with confidence, partly due to my natural disposition, and partly due to the care and teaching of my parents. I didn’t want to show them I had failed, that all the life and light and been crushed out of me. I didn’t want to see the boys I used to date with relief on their faces that things had ended.

Now that I am sick, I dwell on those expectations – shimmering hazily before me – and I feel that at every turn I am disappointing those friends and acquaintances. I know in my heart that these expectations are hardly real, and most of my old friends won’t think twice about how I look now and where I am at in life. To them, I am still simply “Hannah,” their friend and loved one. But in my own mind, I see pity on their faces, disgust in their eyes, and disappointment in their words.

How sad that I did not realize this for so long! I feel that I don’t measure up to the standards that I created in my own mind and imagine are coming from them! Four years ago when they knew me I was fun, happy, confident, successful, smart, beautiful, trim, and talented. Now, (again only in my own mind), I think they see me as pitiful, failing, poor, lazy, ugly, fat, and sad.

And one day, I realized that in order to be happy, and to let go of those expectations that I felt continually mocked me, I had to correct my thinking. Again, I had to come to terms with who I was. I had to realize my worth was the same. I had to realize that my life is changed, but not necessarily for the worse. I had to remember that overcoming the trials I have been given is a success, just a different one than I had planned!

I am a little plumper, perhaps a little sadder and wiser, more aware than ever before of the hidden trials people have. I am much more tired, and I don’t work anywhere that I ever thought I’d work. I am not dating, I don’t go out much with my health, and I write a blog for fun – which I never would have done in my previous life.

I have chronic fatigue syndrome, chronic migraines, now chronic back pain from a herniated disc. And yet, I press on. My dreams and goals have shifted, but I have made new ones for myself – goals that I can make even with my weaknesses and struggles.

I have gained weight, but despite feeling sick and tired all the time, I still have a job – part time, it’s true, but I still challenge myself to improve and become better. I have met lots of people and loved every single one of them. I have made new friends, and made new memories. I have tried to bless my immediate family as much as I can, and try to serve them often.

Are these not things to be proud of?

I need to let go of being ashamed. I need to forget the expectations that I hold myself to, and remember that who I am is just as great as who I was. I need to remember that a couple of pounds gained doesn’t diminish my beauty. I need to remember that love is out there for me somewhere and that I am worthy of a good man.

For so long I thought this illness diminished my ability to be human, but now I realize it is these things that make us human. It is not only our strengths and our successes that define who we are, but also, our struggles, our trials, our fears, and our losses.

And most of all, I need to remember who I really am – a friend to those around me, someone who tries hard at everything she does in life, someone who loves deeply, someone who can help those around her. I am someone who can still laugh — despite pain, sorrow and exhaustion. I am someone who still smiles, even when I am crying inside. I am someone who still listens to others’ struggles and feels their pain with them. I am someone who can still sing all day – even when my heart is breaking. My illness does not define me. My soul and spirit are worth as much as they were before – and they are valuable!

I want all of you to remember that no matter what your illness is, it has not taken who you really are away. We may feel that we are fading into the background, but we have to realize that our lives are still of worth – we can still be sexy, and smart, and talented. We can still be mothers, and fathers, and businessmen, and siblings, and friends, and teachers. We need to push away the lies we tell ourselves: that others judge us, or that we aren’t living up to the our potential or expectations, that we are too fat, or too thin, or too dumb or too smart. I beseech you to look inside and find the light that is somewhere deep within and let it shine. Be proud of who you are, and who you can become! And don’t forget how many lives you touch, and how many people love you.

We may lose ourselves a bit because of our illnesses, but I think it also gives us the ability to find ourselves – more than anything else! Because unlike others, our confidence isn’t built on our abilities or our beauty, or our health; it is built on who we truly our inside. Our confidence will be built on the foundation of our very souls – and once it is, it can never be shaken or taken away from us.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by boytsov