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I Illustrate What Life With Chronic Illness Is Like While I Am Still Able To Draw
184points
User submission
12.1K
Art, Illustration3 years ago

I Illustrate What Life With Chronic Illness Is Like While I Am Still Able To Draw

This chronic disease leads to complete quadriplegia. This disease began as a foot drop at age 20 and since my body has gotten weaker over time, like a slow-motion blur. Today, I’ve been in a wheelchair for eight years. Last year I graduated from a manual chair to a powered chair. Eight years ago this terminal illness began wasting my upper body including my core, neck, arms, shoulders, hands, and fingers. I am an artist. One day I will be too disabled to draw… among one thousand other things. This is a daily devastating reminder. Despite it, I live my life to the fullest, fully grasping the essence of what time means.

I received a BFA in Automotive and Product Industrial Design while searching for diagnosis during the early stages of this disorder. Over time I’ve become a very active public advocate, eleven years to be exact. In my journey through advocacy, I’ve been a columnist, blogger, speaker, grassroots fundraising and awareness campaign creator, and runner and artist. Everything I have done in eleven years has meant to shed a light on disability and a spotlight on such a rare disease.

I document the progression of my rare disease through unique artwork. A few years ago I shared some of my drawing ideas with Bored Panda. In that time I’ve developed a growing list of chronic symptoms and have been on a 2-3 year diagnosis search, yet again. I’ve been living on another spectrum of disability known as “chronic illness” or “invisible illness”. Even I, as a disabled person, had little knowledge or experience with chronic illness. Now that I am living with it I decided to expand my art to this sect of illness to gain awareness and understanding. Chronic Illnesses like autoimmune disease and cancer are the fastest growing sect of medical health. Please, take a look below as I share what it is and how it feels in new illustrations.

More info: kamredlawsk.com | Instagram | Facebook | twitter.com

Torn

A tale about chronic illness and its rapture (chronic pain, chronic neuropathy, chronic fatigue etc.).

Cellular

“A human body is a conversation going, both within the cells and between the cells, and they’re telling each other to grow and to die; when you’re sick, something’s gone with that conversation.”
-W. Daniel Hillis

Inspired by a microscopic view of white blood cells, nerve bundles, and chronic illness.

White Blood Cells (WBCs) fight infections from bacteria, viruses, fungi and other pathogens. These WBCs are made in the bone marrow & travel in the blood throughout the body. Their job is to sense and destroy pathogens.

But if your body has too few or too many WBCs, then your body goes haywire. Low WBC count can result in cancers like leukemia, lymphoma, and multiple myeloma, and/or result from chemotherapy and radiation. High white blood cells cause breast cancer, colon cancer, blood cancer, cervical cancer, and lung cancer.

Autoimmune disorders (the symptoms I’m experiencing) like MS, Lupus, Sjögren’s, Rheumatoid, Hashimoto, Addison’s and Graves disease, instruct your body to attack and destroy its own WBCs. Cases for each person can range from mild to severe. Viruses can cause low WBCs. A well-known specific kind of WBC is HIV.

Today, 50 million Americans, 80 percent of them women, have one or more autoimmune conditions. Before the ’80s you didn’t really hear of autoimmune disorders. In the ’90s one in 400 people developed an autoimmune disease. Today, it’s one in 12 Americans, and one in nine women have an autoimmune disease. More women are diagnosed each year with autoimmune disease than breast cancer and cardiovascular disease combined.

In this experience, I’ve developed much empathy for those with a chronic and invisible illness.

How It Feels (I)

This drawing tells the tale of nerve pain and how it feels. I have been experiencing mysterious growing chronic symptoms unrelated to my GNE Myopathy. GNEM is a very rare genetic muscle-wasting disorder I’ve lived with for nearly 20 years. Over the past couple of years, I’ve been on an intense diagnosis journey with many specialists who have no answers in sight. Through this experience, I’ve been made aware of another world of disability. It’s known as ‘invisible illness’ or ‘chronic illness, a form of disability that is ever-growing but still largely misunderstood in the public’s eye and in the medical field.

Statistics say, 1 in 2 people (133 million) have a chronic condition. Examples of chronic illnesses are autoimmune diseases, fibromyalgia, Crohn’s disease, Lyme disease, CRPS, chronic fatigue syndrome, Lupus, MS, Ehlers-danlos, cancer, and mental illness. Examples of symptoms are chronic pain, nerve pain, migraines, chronic itching, chronic fatigue, cognitive impairment, depression, and anxiety.

Those with illnesses and disabilities, who deal with chronic pain regularly, are often overlooked, and so once again I’m forced to be my best advocate just like my long and tumultuous journey for my GNE Myopathy diagnosis. I’ve seen many doctors for my growing chronic symptoms like nerve pain, chronic pain, and unrelenting itching but I’ve found no one wants to find out why this is happening and instead feed me painkillers. I’m not satisfied with this kind of care and lack of collaboration among specialists to achieve a diagnosis. I have learned a lot and have much to say about the medical and drug industry field… too long to post here.

How It Feels (II)

This drawing tells the tale of chronic pain and how it feels. During more extreme episodes it feels like a blanket of pain is surrounding me, as if I was covered in bruises. Suffering from chronic illness is physically painful and emotionally exhausting.

One of the main complaints from invisible illness individuals is no one believes them because they look healthy due to symptoms that can’t be seen, only experienced. The usual response is: “but you look so good”. These individuals are often accused of faking or imagining their disabilities but it’s impossible to look at an individual and know they privately suffer from some form of invisible illness.

This experience and lack of public understanding has sparked a desire to open up about this new health issue and draw upon it along with illustrating moments related to my genetic muscle-wasting condition.

Physical health and uncontrollable chronic pain and other chronic symptoms often lead to suicide. Statistics say these are major factors in up to 70% of suicides. The divorce rate among chronically ill is over 75%.

How It Feels (III)

My body feels like a pile of bricks. I often say I feel like I’m dragging around a corpse. As I progress I feel heavier. My limbs feel lifeless and I often envision a hill in the shape of my body with gravestones on top. Between the weakness and the pain, I feel like a dead person. I’m young and yet my body feels as if it has lived 90 years. My body is weary and aged yet my soul feels like a vibrant woman in her 20s. It’s a constant contradiction I try to balance.

Through the years I’ve learned to befriend her, my body, for it’s not her fault this is happening. She weeps when I weep.

Bottled Up

This one is about my muscle wasting disorder and the list of ambiguous chronic symptoms of pain, nerve pain and relentless itching. It’s the physical and emotional repercussions of feeling trapped and limited as I’m caught in the center of turbulence. It’s also what happens when we are emotionally bottled up – keeping ourselves on the inside in fear of vulnerability.

Holding On

Those moments when we are blinded by our struggles, blinded by the past, present and future —unable to see the truth of what we thought was true about life and ourselves — barely holding on.

Painstaking

When I’m experiencing chronic pain I visualize it as a blanket enveloping my entire body. This even applies to lamenting over the loss of my body due to my constantly progressing muscle-wasting disorder.

Physical and emotional pain can visit any one of us. This is how it feels. In these moments all that’s left to do is find beauty… somewhere. Anywhere. This looking at the light is difficult and requires great mental focus, but it’s necessary in order to continue the tether that connects me to this world.

This time I gave a nod to my Korean heritage. The cloak of physical or emotional pain is a loose interpretation of a “hanbok”, a traditional Korean dress. Korea’s National flower is Hibiscus Syriacus or “Rose of Sharon”. The smaller flower graphics is the exact design from my childhood Korean passport when I flew to America at four years old to meet my first family.

Wear your pain when you need to, but don’t forget to keep searching. Keep going.

Self-Doubt

Self-doubt is universal. The phantom of us imposes its will of self-doubt and insecurity. I experience self-doubt all the time as an artist, designer, and disabled person forced to prove their worth in an able-bodied world.

Healing Nature

When you’re feeling trapped in chronic illness, (rare) disease, it’s important to find healthy vices to take your mind off the present pain. One of my vices is nature.

Bathing Woman

This one is about my imaginary life that encroaches on my everyday life and how these worlds intersect. Sometimes I have these waking dreams and reality intertwines – leaving me unable to decipher one from the other. I saw this image while in the bathtub. Vines began growing around me as water cursorily leaked out, leaving me vulnerable. I often use imagination to make sense of what is happening. It’s one of my vices for dealing with present pain and struggle.

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Withnail
Community Member
3 years ago

Thank you for sharing your wonderful art. I cannot imagine what your body is going through, but your art gives me some insight into your state of mind. Thank you for sharing, stay strong and keep fighting for as long as you can ♥♥♥

Monica Michelle
Community Member
3 years ago

The dragging around a corpse is visceral. I am obsessed with your art. From a fellow chronic illness artist to another, thank you

Kaiserfranzgirl
Community Member
3 years ago

Amazing thought-provoking artwork! So much depth of emotion

Nikki D
Community Member
3 years ago

My mom has a chronic pain condition and one of the worst effects is how many friends she has lost. Her whole life is pain, so that's kind of all she has to talk about, and everyone just got tired of hearing it. Her brother called it her ”woe is me" attitude that he was tired of hearing. But she just can't pretend that everything is ok when she is in hell. I wish I could help her more, but I just listen.

Danikah
Community Member
3 years ago

I'm so sorry for your mom. I've lost most of my friends as well because there is only so many times you can cancel plans when you feel too awful to get up before everyone stops asking and stops talking.

Load More Replies...
Oxfret
Community Member
3 years ago

I have had a disconnect in my peripheral nerves my entire life. I have no diagnoses and at this point, after asking for help so many times I've lost faith in the medical industry and the usefullnes of diagnoses in the first place. The only reason I even know I have this problem is because I am combating it, in the past 6 months to a year I discovered my limbs have always been out of place and my face has been numb only by miraculously learning how to start activating my mussles on my own. I dont know if there is legitimate biological reasons for some people to be going through this, I only know I've never been diagnosed and I'm finding it posible to heal though self medicating and meditation. I am at a loss for how to share this info or speak up in a way to reach those it would help, but this is my long term goal. Thank you for sharing, we need all the voices we can get.

Laura Habermehl
Community Member
3 years ago

This is inspiring. I have chronic illness relating to my gut and intestinal areas. It's made me so sick as to be unable to work or properly care for myself. So I get that part. I don't even want to imagine the difficulties you're facing, but seeing that you do, and that you are still able to find beauty and ways to keep yourself going is awesome. And inspiring to me. People like us, and especially you, are forced to be wise fast. And seeing your maturity and wisdom makes me feel like I can definitely go through what I'm going through.

Liz Mosby
Community Member
3 years ago

Thank you for sharing your story through your words and art.. The self doubt is my fav, but they're all beautiful.. I'm so sorry such a talented and young artist has to go through this.. We are only given what we're can handle, and it takes the most amazing ppl on the planet to go through this type of stuff.. I think you're amazing and that you have so much to offer the world, your message, your art, your inspiration, your relentless ways to raise awareness and find your diagnosis.. It helps heal you while helping so many others out there.. There's a lot of ppl out there that have been waiting for someone like you to speak up for them and what they're going through. Ppl who haven't been able to get diagnosed, ppl who feel kind they're going crazy trying to figure out what's wrong with them, ppl who see your symptoms happening to them, and recognizing they're going to be ok bc they're not alone.. Nothing but greatness comes from ppl like yourself.

Carii Durec
Community Member
3 years ago

Thank you for this wonderful article and art work. I have shared this site with some of my friends with "invisible illness".

Bumblebee
Community Member
3 years ago

Living with a chronic (nerve) pain disease and a chronic (muscle) pain disease, I relate to many of these pictures you have drawn. Though my diseases are both diagnosed, it is still very unknown to most people. And when I got the diseases it was still very unknown to doctors too. They know more about it now, but not enough yet for a cure for me, though some others have been cured. Not every treatment works on every patient that have these exact same diseases. Though mine got worse with time, it does not affect my ability to move. I can't imagine what that must be like. Sending you love, physical strength (every little bit you have left) and mental strength! Keep pushing, keep fighting, and keep enjoying life to your fullest potential!

debrina blackmoon
Community Member
3 years ago

cool art for such a sad state

debrina blackmoon
Community Member
3 years ago

this definitely needs more points! i can relate to some of these symptoms and would not be surprised if i end up very weak also

Community Member
3 years ago

Thank you!

Load More Replies...
Rebekah Blankenship
Community Member
3 years ago

These moved me very much. I have several autoimmune disorders and it's hard to make others understand. You can't really understand the pain and feeling like you want to give up to just stop the hurt. I've been fighting for 15 years and there is no end

Dana
Community Member
3 years ago

I started tearing up on the self doubt

Tracy Bray
Community Member
3 years ago

I love your art. It captures how I feel. I have fibromyalgia, and have tried to put into words what you have clearly created in your images.

Susann Campbell
Community Member
3 years ago

Not only an artiest but a wonderful writer of what it is to have an invisible disease. Seeing beautiful things and imagination with laughter at funny movies or someone joking is a relief or distraction of the pain that is ever present. I love her art work showing what she feels and I'm sure this is only a tip of that ice berg . One I can say I do is curling up in a tight ball and contort all the joints of your body to make it real to anyone who can see how it feels. At that point you know it's time to take another pain pill so you can at least rest . They have not found a cure or even a reason for this type of pain and that in its self is our life without hope.

mattie
Community Member
10 months ago

Absolutely breathtaking. I teared up. The artistic expression of all the feelings and pain I have is so powerful. Thank you for sharing

neverbeenbored
Community Member
2 years ago

As someone with a chronic pain disorder, these images speak to me. I just can't express how many feelings it embodies.

Snuggle Bee
Community Member
2 years ago

Amazing work. You've captured the beast of long term illness, so beautifully. I feel I understand, I too live in a world of chronic illness and debilitating pain. I'll correct myself on that last sentence, I don't 'live' at all. I exist. From one day to the next. The pain alienates me from the community, friends and even myself. This body is not the one I had, what happened to it, why? Thank you for giving an artful, heartfelt expression of the life so many lead in silence.

KMB
Community Member
2 years ago

I am sorry for your pain. I have a friend who is a quadriplegic. Amazingly he has retained his sense of humor. He watches TV, listens to books on tape and enjoys his grandchildren immensely. He is an inspiration to me

Ginger Jeffers
Community Member
3 years ago

My family is dealing with chronic illness as well, but to a much lesser degree. I am so sorry for the struggles and pain you deal with daily. I'm glad you can use your art to help others understand. We recently learned about a diet plan that is helping to reverse lots of autoimmune issues. It is a very "gut healthy" diet, and the theory is that the gut is the main source of our immune system. We have not even been on it a week, so I have nothing to report, but I do think the book is worth reading. It is The Plant Paradox By Dr. Steven R. Gundry. He also has a second version of the book - The Plant Paradox Quick and Easy; it's a 30 day eating plan version. I know someone who reversed her Lupus with this diet. I hope that sharing this information might help others.

Withnail
Community Member
3 years ago

Thank you for sharing your wonderful art. I cannot imagine what your body is going through, but your art gives me some insight into your state of mind. Thank you for sharing, stay strong and keep fighting for as long as you can ♥♥♥

Monica Michelle
Community Member
3 years ago

The dragging around a corpse is visceral. I am obsessed with your art. From a fellow chronic illness artist to another, thank you

Kaiserfranzgirl
Community Member
3 years ago

Amazing thought-provoking artwork! So much depth of emotion

Nikki D
Community Member
3 years ago

My mom has a chronic pain condition and one of the worst effects is how many friends she has lost. Her whole life is pain, so that's kind of all she has to talk about, and everyone just got tired of hearing it. Her brother called it her ”woe is me" attitude that he was tired of hearing. But she just can't pretend that everything is ok when she is in hell. I wish I could help her more, but I just listen.

Danikah
Community Member
3 years ago

I'm so sorry for your mom. I've lost most of my friends as well because there is only so many times you can cancel plans when you feel too awful to get up before everyone stops asking and stops talking.

Load More Replies...
Oxfret
Community Member
3 years ago

I have had a disconnect in my peripheral nerves my entire life. I have no diagnoses and at this point, after asking for help so many times I've lost faith in the medical industry and the usefullnes of diagnoses in the first place. The only reason I even know I have this problem is because I am combating it, in the past 6 months to a year I discovered my limbs have always been out of place and my face has been numb only by miraculously learning how to start activating my mussles on my own. I dont know if there is legitimate biological reasons for some people to be going through this, I only know I've never been diagnosed and I'm finding it posible to heal though self medicating and meditation. I am at a loss for how to share this info or speak up in a way to reach those it would help, but this is my long term goal. Thank you for sharing, we need all the voices we can get.

Laura Habermehl
Community Member
3 years ago

This is inspiring. I have chronic illness relating to my gut and intestinal areas. It's made me so sick as to be unable to work or properly care for myself. So I get that part. I don't even want to imagine the difficulties you're facing, but seeing that you do, and that you are still able to find beauty and ways to keep yourself going is awesome. And inspiring to me. People like us, and especially you, are forced to be wise fast. And seeing your maturity and wisdom makes me feel like I can definitely go through what I'm going through.

Liz Mosby
Community Member
3 years ago

Thank you for sharing your story through your words and art.. The self doubt is my fav, but they're all beautiful.. I'm so sorry such a talented and young artist has to go through this.. We are only given what we're can handle, and it takes the most amazing ppl on the planet to go through this type of stuff.. I think you're amazing and that you have so much to offer the world, your message, your art, your inspiration, your relentless ways to raise awareness and find your diagnosis.. It helps heal you while helping so many others out there.. There's a lot of ppl out there that have been waiting for someone like you to speak up for them and what they're going through. Ppl who haven't been able to get diagnosed, ppl who feel kind they're going crazy trying to figure out what's wrong with them, ppl who see your symptoms happening to them, and recognizing they're going to be ok bc they're not alone.. Nothing but greatness comes from ppl like yourself.

Carii Durec
Community Member
3 years ago

Thank you for this wonderful article and art work. I have shared this site with some of my friends with "invisible illness".

Bumblebee
Community Member
3 years ago

Living with a chronic (nerve) pain disease and a chronic (muscle) pain disease, I relate to many of these pictures you have drawn. Though my diseases are both diagnosed, it is still very unknown to most people. And when I got the diseases it was still very unknown to doctors too. They know more about it now, but not enough yet for a cure for me, though some others have been cured. Not every treatment works on every patient that have these exact same diseases. Though mine got worse with time, it does not affect my ability to move. I can't imagine what that must be like. Sending you love, physical strength (every little bit you have left) and mental strength! Keep pushing, keep fighting, and keep enjoying life to your fullest potential!

debrina blackmoon
Community Member
3 years ago

cool art for such a sad state

debrina blackmoon
Community Member
3 years ago

this definitely needs more points! i can relate to some of these symptoms and would not be surprised if i end up very weak also

Community Member
3 years ago

Thank you!

Load More Replies...
Rebekah Blankenship
Community Member
3 years ago

These moved me very much. I have several autoimmune disorders and it's hard to make others understand. You can't really understand the pain and feeling like you want to give up to just stop the hurt. I've been fighting for 15 years and there is no end

Dana
Community Member
3 years ago

I started tearing up on the self doubt

Tracy Bray
Community Member
3 years ago

I love your art. It captures how I feel. I have fibromyalgia, and have tried to put into words what you have clearly created in your images.

Susann Campbell
Community Member
3 years ago

Not only an artiest but a wonderful writer of what it is to have an invisible disease. Seeing beautiful things and imagination with laughter at funny movies or someone joking is a relief or distraction of the pain that is ever present. I love her art work showing what she feels and I'm sure this is only a tip of that ice berg . One I can say I do is curling up in a tight ball and contort all the joints of your body to make it real to anyone who can see how it feels. At that point you know it's time to take another pain pill so you can at least rest . They have not found a cure or even a reason for this type of pain and that in its self is our life without hope.

mattie
Community Member
10 months ago

Absolutely breathtaking. I teared up. The artistic expression of all the feelings and pain I have is so powerful. Thank you for sharing

neverbeenbored
Community Member
2 years ago

As someone with a chronic pain disorder, these images speak to me. I just can't express how many feelings it embodies.

Snuggle Bee
Community Member
2 years ago

Amazing work. You've captured the beast of long term illness, so beautifully. I feel I understand, I too live in a world of chronic illness and debilitating pain. I'll correct myself on that last sentence, I don't 'live' at all. I exist. From one day to the next. The pain alienates me from the community, friends and even myself. This body is not the one I had, what happened to it, why? Thank you for giving an artful, heartfelt expression of the life so many lead in silence.

KMB
Community Member
2 years ago

I am sorry for your pain. I have a friend who is a quadriplegic. Amazingly he has retained his sense of humor. He watches TV, listens to books on tape and enjoys his grandchildren immensely. He is an inspiration to me

Ginger Jeffers
Community Member
3 years ago

My family is dealing with chronic illness as well, but to a much lesser degree. I am so sorry for the struggles and pain you deal with daily. I'm glad you can use your art to help others understand. We recently learned about a diet plan that is helping to reverse lots of autoimmune issues. It is a very "gut healthy" diet, and the theory is that the gut is the main source of our immune system. We have not even been on it a week, so I have nothing to report, but I do think the book is worth reading. It is The Plant Paradox By Dr. Steven R. Gundry. He also has a second version of the book - The Plant Paradox Quick and Easy; it's a 30 day eating plan version. I know someone who reversed her Lupus with this diet. I hope that sharing this information might help others.

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