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The Myths of Being Chronically ill and Useless

Updated on August 24, 2017

Useless? Don't Be Crazy

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.

The Music of Breaking Benjamin

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."

#1 Depressed or in Denial

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!

Books on Depression

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.

Buy The Book of Pollyanna

Pollyanna
Pollyanna

Instead of seeing Pollyanna's optimism as a negative, I find it to be refreshing. Seeing the good in life is a great gift. Want to know more of her story? Purchase the book and see the positive Pollyanna effect.

 

#2 Do Not Tell A Chronically ill Person They Look Good

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.

#3 We Sit At Home All the Time

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!

#4 It's Okay For Us to Give Up Because Things are "To Hard"

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.

#5 We Feel Useless

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.

Get some Rosetta Stone, Make Origami, Learn to draw...Never Feel Useless

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.

Anyone can debate it.

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

Dedicated To My Friend and Fellow Fish Girl

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.

Questions? Comments? Flames of Anger? - Take ten seconds and share a thought or ten

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    • Kalafina profile image
      Author

      Kalafina 4 years ago

      @Keepingscore: I certainly hope not. Although, maybe it's the chronic illness which brings out the creative side. We have a unique view of life and maybe it gives us a creative edge. Thank you for your comment and what an interesting question!

    • Keepingscore profile image

      Keepingscore 4 years ago

      Nice job. I've noticed that a surprisingly large number of authors or other creative people suffer from this or other similar conditions. While on the one hand it makes sense as perhaps a more traditional career might not be a good match, is it also possible more artistic/creative people are more prone to this???

    • profile image

      poutine 4 years ago

      Very touching.

    • profile image

      poutine 4 years ago

      Very touching.

    • profile image

      anonymous 4 years ago

      i was struck by your lens here. It does show that you have a critical illness. But i don't know what it is. A few advice.

      1. Don't give up

      2. Please always enjoy ur life the most [u are pretty u know that coz i know that]

      3. I really recommend u to watch a series of a japanese drama called 1 litre of tears. It will be really meaningful. Enjoy your life.

    • sheilamarie78 profile image

      sheilamarie78 4 years ago

      I love your "dancing in the rain" image! I have recently had to embrace a chronic illness, too. God bless you, girl! There is no such thing as a "useless life"!

    • OrganicMom247 profile image

      OrganicMom247 4 years ago

      wonderful lens.

    • John Dyhouse profile image

      John Dyhouse 4 years ago from UK

      Very informative and useful page. We all tend to push thinking about this out of mind unless and until it becomes necessary. A very brave lens, all the best to you.

    • profile image

      anonymous 4 years ago

      Love this lens. It does deserve its purple star. Well done and keep going :)

    • profile image

      dellgirl 4 years ago

      Touching lens, it is very inspiring! Thanks for putting this together and for sharing it. Keep up the good work.

    • profile image

      dellgirl 4 years ago

      Touching lens, it is very inspiring! Thanks for putting this together and for sharing it. Keep up the good work.

    • Kalafina profile image
      Author

      Kalafina 4 years ago

      @Two Crafty Paws: Agree! It was actually in an article written by a famous tv station.

    • pigwear profile image

      pigwear 4 years ago

      Thank you for sharing your struggles and successes!

    • Kalafina profile image
      Author

      Kalafina 4 years ago

      @sarasentor lm: Your words leave me with a not so hidden confusion. Is that a positive or negative thought?

    • sarasentor lm profile image

      sarasentor lm 4 years ago

      This lens is telling too many things which are hidden in its words.

    • Two Crafty Paws profile image

      Two Crafty Paws 4 years ago

      #2 Do Not Tell A Chronically ill Person They Look Good - whoever thought of this must be a complete ****** =). Inspirational read.

    • NoobWriter LM profile image

      NoobWriter LM 4 years ago

      Sometimes when normal healthy people are greedy for things that are worthless, they forget that the life they have are the biggest gift they have. You are and will be an inspiration for such people :)

      God Bless You

    • norma-holt profile image

      norma-holt 4 years ago

      It's hard to address this lens as it is sad and happy at the same time. What is your illness? Do you know or is it depression or CFI or something? It must be hard for you to put it into words and you have done a super job in relating the story. Blessed

    • Gypzeerose profile image

      Rose Jones 4 years ago

      Thanks for the great lens - pinned to my inspirational board and blessed.

    • Tonto Murray profile image

      Tonto Murray 4 years ago

      So sorry about your anger but kudos to you for being such an inspiration and thanks for sharing this lens.

    • SecondHandJoe LM profile image

      SecondHandJoe LM 4 years ago

      I'm angry that you live with illness. Thank god you have the strength to handle it with dignity. You're amazing and deserve all your amazing friends.

    • The One Stop Shop profile image

      The One Stop Shop 4 years ago

      Thanks so much for sharing, you are such an inspiration. You're so right about what you say. Each and every time I get down about my illness I remind myself the same things.

    • RoadMonkey profile image

      RoadMonkey 4 years ago

      Thank you for writing this lens. It has been very thought provoking for me, especially as I have the chance to do, at my advanced age, what you would like to do as a young person. I truly hope you get to do your graduate studies some time.

    • profile image

      Doc_Holliday 4 years ago

      From a few comments which you made on another lens, I got the impression that you have a gluten and lactose intolerance. But this lens made me REALLY curious as to what your actual diagnosis is. ps. You may be ill but you look real cute :-)

    • rattie lm profile image

      rattie lm 4 years ago

      I was about to say I'd give this lens a purple star if I could, but I checked and you HAVE a purple star! Congrats. You certainly deserve it. Like you, my daughter is chronically ill, but she has never let it beat her. She excels at work and leads a full social life. It's all about attitude and determination.

    • HSP Connections profile image

      Peter Messerschmidt 4 years ago from Port Townsend, WA, USA

      I really enjoyed reading this part of your story. We can't possibly imagine what it's like to be in someone else's shoes... but it's a little easier when someone shares, the way you've done here.

    • tonybonura profile image

      Tony Bonura 4 years ago from Tickfaw, Louisiana

      You are a very funny and inspirational lady. I am so glad that I have had a chance to "meet" you. Not that I think I know you because I read a couple of your lenses. :-)

      TonyB

    • goldenrulecomics profile image

      goldenrulecomics 4 years ago

      Thank you for sharing your thoughts. You are a magnificent person and a great example!

    • Carpenter76 profile image

      Carpenter76 4 years ago

      Respect for you for writing this lens.........Don't know what to say, you made me speechless.

    • WriterJanis2 profile image

      WriterJanis2 4 years ago

      This is so inspirational! Blessed!

    • mbgphoto profile image

      Mary Beth Granger 4 years ago from O'Fallon, Missouri, USA

      Thank you for sharing your story. Blessings to you

    • kmhrsn profile image

      kmhrsn 4 years ago

      You go, girl! I live what you say about your relationships and how much more you appreciate them.

    • WebWriteGirl LM profile image

      WebWriteGirl LM 4 years ago

      Thank you for your sharing your story. You are inspiring :)

    • CCGAL profile image

      CCGAL 4 years ago

      I'm really sorry that you face a chronic illness. I wish I could heal the world, but as you know, that's just a fantasy. However, you've made some excellent points here, and I am confident that you are going to reach people who need to know what you've shared. Thank you for making the world a nicer place by sharing your story here.

    • Jogalog profile image

      Jogalog 4 years ago

      You are an inspiration. Blessed.

    • AcornOakForest profile image

      Monica Lobenstein 4 years ago from Western Wisconsin

      I always appreciate hearing how someone in a particular situation feels. We think we can imagine how it might be but we're never sure if we're right out how we might respond to the same situation. This helped me understand more how you feel and how others might feel as well. By the way... You look great! :) Blessed

    • profile image

      greytdogz 4 years ago

      This is one of the best lenses I have read. You are so inspiring to everyone - chronic illness or not. Thank you.

    • safereview profile image

      Bob 4 years ago from Kansas City

      This was touching, inspiring and really insightful. Thank you for sharing this with us.

    • SusanDeppner profile image

      Susan Deppner 4 years ago from Arkansas USA

      I have lots of thoughts but will just share a couple. Being a cancer survivor I do understand your situation just a little bit. Having a family member with a chronic illness, I understand her not wanting to attend support group meetings a WHOLE lot better than I did. (We mean well, we really do.) You are an inspiration - "useless" would never, ever come to mind. A belated Happy Birthday to You, my dear! And many more to come!

    • laughingapple profile image

      laughingapple 4 years ago

      Really great lens. Beautiful jewelry.

    • Kalafina profile image
      Author

      Kalafina 4 years ago

      Nope. That was actually a part of our Vegas experience. We were waved past a line into the LAX club and then asked to party VIP. One guy grabbed us and introduced us to all these very....interesting people. Then, when he realized neither of us really cared to get to 'know' him better. He told us he needed to go and 'mingle.' What that actually meant was he went into the crowd and started moving his hands to something only he could see. Thus, we realized he may have been a little cracked out and then tried to escape the VIP. Since his 'performance,' we like to mimic his mingling whenever we go out. The actual amusing story is in a book.

    • eightieschild profile image

      eightieschild 4 years ago

      LOL, you're right about saying that googling for chronic illness was a dangerous decision - there are certainly a ton of ignorant people out there on the internet, which you can just make you feel bad. Although there to be fair, there are just as many ignorant people in real life too!

      And the idea that someone's usefulness is in any way related to their physical abilities is just laughable. It's easy to forget that they are many non-disabled people who probably are quite useless, and disabled people who lead full lives. It's all down to how you decide to live your life, regardless of your circumstances and you seem to be a naturally positive person.

      In real life, I have two friends who are chronically ill, one of whom has had Parkinsons for over 25 years and by most medical opinions shouldn't even be alive now. Both of them, like you, are optimistic people, and they both inspire me with their attitudes.

      Btw, what's going on in that Vegas photo? Is that the Thriller dance? ;)

    • Cari Kay 11 profile image

      Kay 4 years ago

      I'm honored that you wanted me to read your page. Thank you so much. I know people who break each and every one of those stereotypes.

    • profile image

      JoshK47 4 years ago

      Extremely well put together lens you have here - thanks so much for sharing. Blessed by a SquidAngel!