The Myths of Being Chronically ill and Useless

Although I primarily lead a happy chronically ill life, there are moments where the loss of my life is to much and I break down. This past week was my birthday which is always a struggle. Finding yourself a year older and seeing the sharp contrast between your dreams and your reality can break even the strongest hearts. Not to mention getting a gift which stabs you through the heart with just how far people are from understanding you.

Luckily, I have great friends, one of which who sat there texting with me at two in the morning.She let me unleash all the hurt, frustration, and anger without making me feel like a failure. After an hour of emptiness and crying lot of tears, she also brought me back to myself with the humor we adore so much in each other. When I bemoaned how my slender size had gotten down to icky skinny, she told me "You are the hottest chronically ill girl I know! You're body is like..damn! So sexy!" I laughed and pointed out, "I am the only chronically ill girl you know." Still, her words made me realize our friendship and humor has stayed the same even if my health has not.

This past week I made the dangerous decision to look up being chronically ill on google. I say dangerous because it has never boded with good results. Psychologists give their input and so do doctors on how the chronically ill feel. The problem? They are not chronically ill. News articles state what to say and not to say to us. They try to teach people to tiptoe around those of us who are supposedly clearly miserable from our illness.

Some articles made me want to find the author and punch them which is saying a lot from a physically weak and non-violent person. Many tried to point out how we can not hold a job, feel completely useless, and then tried to unconvincingly say we are not. Useless? If you are chronically ill or healthy and are feeling useless, you need to read this squidoo or hunt down those people and give them a good whack for me. So listen up all you non-chronically ill people teaching others about being chronically ill, we are not all pining away in misery and being useless. Just having the will power to survive another day gives us something so useful it cannot be described.

I often listen to foreign music while writing a lens. This time I made a rare choice and decided on the non-foreign band, Breaking Benjamin. The passion and honesty in so many of their songs just felt right for the moment. My favorites have been and will always be, "Dance with the Devil" and "Diary of Jane."

One of the sites I read had an article written by a psychologist describing the two ways the chronically ill deal with their sickness. According to her, we are either in misery and depressed about losing our former life or suffering from the 'Pollyanna' effect.

Evidently, the Pollyanna (poor Pollyanna!) effect is where you refuse to acknowledge the situation and pretend it is not there. O. It is true. I needed about six months before reality hit and I realized this was my life. Still, everyone wakes up. Look what happened to Pollyanna (in the book). She got hit by a car. I guess you could say having a big event does wake you up but it does not mean you instantly switch to being depressed all the time mode.

The miserable and depressed part made me very angry. Why does everyone assume we are sad all the time because life has taken a drastic change? I never appreciated life the way I do now. The love I feel for my boyfriend, family, and friends has magnified times a million. For the first time, I appreciate how wonderful it is to have so many amazing people around me. Before I was always going and never stopped to look around. Now I see the world in a thousand different ways. Those who are chronically ill know this change. Yes, you get depressed but the bright side far outweighs any blackness.

My picture? I sang karoake the first time and we laughed about our Vegas 'mingling' experience (buy the book if you want to hear the tale which goes with). So I am chronically ill but it does not mean I cannot dance and sing horribly off-key with friends!

Depression affects thousands of people regardless of whether they are chronically ill or not. If you find yourself struggling with life or just plain feel down, consider a book on the subject or seek help from a medical professional. Life is never easy but you do not have to feel alone.

This came from an article on 'how to talk to the chronically ill' from a famous news station. What a bunch of crack! Their reason? Saying it minimizes the seriousness of our illness. Even when going to the doctor, I wear my stylish clothes, do my makeup, and my hair.

The reason? Every time someone says, "You're looking really good today!" I see it as a victory! My chronic illness does not define me and it's not what makes me who I am. So every time I get a compliment I say to it, "Ha! See! I can still look good despite feeling miserable! I will work my cane and wheelchair like they are fashion statements! Now excuse me while I go take a five hour nap from all this excitement."

The picture is from my first Halloween of being chronically ill. Also, the first anniversary of my illness is October 31st. I wanted to be a geisha and ended up having to get the Playboy geisha outfit because it was 70 dollars cheaper than what I wanted. Still, people assumed my cane was not from being chronically ill but stolen from Hugh Heffner. Not exactly planned but it definitely was a great accessory. A true chronically ill victory!

FYI. The hair is completely fake. Again, wanted a black wig for my geisha outfit and was disappointed to find almost no selection. O well, it saved me a lot of time in not doing my own hair.

So not true! As long as there are people who care, there are a million opportunities to get out there and go! In my picture I was visiting the Renaissance Faire. I started out with my cane because I was stubbornly trying to outwit my wheelchair. Sometimes I am a little to forceful against letting my chronic illness win.

In this case, I ended up keeling over, the paramedics got called, and I spent the next two hours being force fed gatorade, draped in cold towels, and being worried over. To ease my frustration, my friend brought me a huge turkey leg which I happily devoured to the amusement of the medical building.

I finally admitted defeat and got a wheelchair for the rest of the fair. Still, I had a good time and got a picture with a very large version of the travelocity gnome. I am not sure if he was going for it but I saw the resemblance. Did I mention I also dressed up? My friends and I believe a key part of enjoying Ren Faire is wearing costumes!

One article I read made me very sad. The person was a college student who got hit with a chronic illness. She wrote about how it is okay to not continue with college and classes (even online ones) because it becomes to difficult. I only finished one class when I first got sick because I missed almost the entire month and a half of the semester. Second semester I was in a wheelchair and needed help from everyone.

Did I have days where I thought of quitting? O yes. Sometimes I would miss a whole week of class or only make it to one or two. My brain had a lot of problems with memory and it became impossible for me to look through microscopes during lab because of the dizziness it would cause. Still, as hard as it was and as stressful, I could not give up.

I have never felt brave or strong throughout my illness. There were days when I did wonder why I was doing this and people did encourage me to just stop trying to finish. Maybe I am just to stubborn or a huge idiot because I refused to let go. Would it have been better for my health to give up because it was so hard? According to one doctor, "I should stay in bed all the time." So perhaps for my health, it would have helped but mentally, it would have been a disaster.

Life is hard but the simple success of making it to class or lab was like a mini victory. If I had given up, I would most likely have never finished college and I would not be the happy chronically ill person I am today.

Smile. You Are Useful

Losing the life I assumed I would have was like losing a very dear friend. There was anger, grief, and sorrow but as time goes on, you learn to accept what has happened. Do I have times where I feel like the most useless being on the planet? Of course.

What chronically ill person does not? We have lost the life we worked so incredibly hard for and are left at a loss on what we should do with ourselves. Those articles which state this are true that it happens BUT we definitely do not feel useless 24/7.

Just like losing someone central to your life, there is a huge hole. When my dreams of graduate school vanished there was an enormous crater sitting in my life. I tried to ignore it but the more I did, the large it grew. Writing on here and sharing my story has made me realize how useful our lives truly are. We have the gift of sharing how precious life truly is. Whether we design jewelry, give inspiration speeches, are wheel-chair bound, or just plain must lay in bed, our lives will always be useful.

Perhaps not in the typical way which I once believed. I intended to make a difference by getting a Ph.D in immunology and was looking forward to being able to spend every day working in a lab with people who shared my passion. Do I still long for my dream? Of course, but I have discovered I am useful in other ways.

Living in my bed for months got very boring very fast. I used to be on the go from the time I woke up until past midnight. Even my meals were on a time schedule (15 minutes to run back eat lunch, then clean reef tank from 2 to 4, then physics group, etc..) Having so much time on my hands started to make me feel useless. I could not do computer work because the screen caused me pain.

So I looked for other ways to be useful. I started learning Japanese, made attempts at watercolor, and created friendship bracelets for my little sister/her friends. I love Japanese so I just got a book on origami. So my next project? Learning how to do origami.

Did you find this lens helpful to understanding living with a chronic illness?

We bonded over alewives and brown trout in the cold,dreary basement of a power plant. Those ten hours of steel-toed boots, hard hats, and dead fish became some of our greatest memories. Since her move across the United States, I have taken one crazy road trip and flown alone to see her. She peels me off the floor when I faint, admires my flair for high high heels, and puts leeches on my fishing pole. Together we make one crazy team and neither of us would have it any other way.