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Participant 14

Participant 14.jpg

Story

“Foreword: "Many Shades of Gray" is my story of having to live with long Covid. There were so many topics I could have written about when asked to tell my story. I decided to speak about the changing medical community. You see, I am a nurse practitioner and see this whole experience from two different perspectives. One is that of a layperson. The other is a trained medical person. I worked in the medical field for 35 years. This was my 'work' family. There is (or was) an unwritten rule that you take care of your own. Not only did I see a disconnect in this system, I experienced it time and time again. No longer did I feel my 'family' would watch out for me if I couldn't. My entire 'family' turned their backs on me in time of greatest need. Boy did that hurt. It still hurts. March 18, 2001 was the day that changed me forever. I hadn't yet met the requirements for the Covid vaccine but was called by the local hospital and offered a dose early. I was hesitant but in the end agreed. Almost exactly 12 hours later, I became sick. Fever, extreme fatigue, and headache. I thought it was due to the vaccine. Three days later, I tested positive for Covid. My symptoms were mild and most of my thoughts were concern for my mom that was visiting from Florida. She went home after testing negative and I continued quarantine. My daughter had a trip planned to Florida for spring break and I encouraged them to go because I was in isolation anyways. In hindsight, it was a decision I wish I hadn't done. I slowly became worse with shortness of breath and difficulty speaking in complete sentences. Being alone was awful and scary. One night I thought I was going to die. I was so sad that I would be alone when I died. I wanted to call my kids and ask them to come back but then I would also be exposing them. In the end, I told them I was doing okay and to continue with their plans. Days turned into weeks and weeks into months. Nights were the worse for me. My saturation levels often decreased into the 80's and made sleeping difficult. I was afraid I would drop too low and die in my sleep. I actually had a doctor laugh when I told him of that fear. My first ER visit was six weeks after diagnosis. The day before, I had a virtual visit with my nurse practitioner. I was never allowed to see her in person even when I was out of quarantine. I tried to explain my breathing difficulties weren't improving. She stated, "This isn't Covid." I thought about the possibility of long Covid and wondered why she hadn't thought about it as well. I spent the entire night awake because my oxygen was in the low 80's. I was frustrated and scared and went to the ER that morning. By then, my oxygen was in the low 90's. Again, this was how my symptoms presented. Daytime oxygen levels were ALWAYS better than nighttime. The doctor proceeded to listen to my lungs in one area only and said there was nothing wrong. "Go home and drink tea and honey." And "By the way, do you live alone?" Great, now I'm frustrated, scared, embarrassed and humiliated. Unfortunately, this wasn't the only encounter like this. It seemed to be the norm. Doctors, nurses, mid-levels, patient advocate, medical supply. Everywhere I turned, I got the same attitude. Sadly, my feelings multiplied-frustrated, scared, embarrassed, humiliated, angry, confused, disappointed, hopeless, anxious, and let down. How could I see so many and not find one that cared? What happened to the medical community? This was my work 'family'. How can they treat one of their own this way? Where was the compassion and empathy one usually sees in a medical person? I get that they are overwhelmed and still don't know a lot about Covid. So, does this mean their initial reasons for going into medicine fly out the window? I'm okay with someone telling me they don't know the answer. I am not okay with them trying to blame my issues on emotional or mental problems. I would have given just about anything for someone to look me in the eye and show concern or lay a hand on my shoulder in support. Not - one - single - person. Is this going to be the new way to practice medicine? This is what students and new graduates see. Is this that they will copy as they learn? The fine art of caring and compassion is being lost. Remember the Hippocratic Oath "primum non nocere" or "first do no harm." This includes physical AND mental harm. I'm going to fast forward because my story could actually write a book. I am now in my 11th month of long Covid. Shortness of breath, fluctuating oxygen levels, chest pain, brain fog, fatigue, ringing in the ears, and neuropathy have all been present to some degree. The breathing issues and chest pain have been the most significant by far. I recently tried to shovel snow and my oxygen dropped to 82 percent. I couldn't use the supplemental oxygen anymore because it was taken away after I was told I had had the oxygen since May and it was time to give someone else a turn. I am improving but it is a very very slow process. I have learned to listen more to what my body is trying to tell me. If it wants to rest, I rest. I am trying to practice patience. I was running half marathons a few years ago and this new lifestyle takes some getting used to. I've taken a step back from the medical system for a while. They did cause me harm at times, and it was becoming more and more difficult to bounce back from those encounters. Hopefully time will heal... Back to my title "Many Shades of Gray". Medicine isn't always black and white as far as decision making. There is the middle ground, or gray area. There is no clear-cut answer. Medicine isn't an exact science. Sometimes you have to evaluate all the information and make your decision based on the best of your abilities. The National Institute of Health (NIH) states the goals of medicine encompass the relief of pain and suffering. How did I not encounter this during the past year? My message to the medical community-Stop throwing everything into the gray area. Yes, there is a lot of gray with Covid, but not all. Don't use it as a scapegoat. Look at the patient. Hear what they have to say. Believe them. There is no reason to believe so many are making things up. Your disbelief is causing more pain and suffering. It is okay to say, 'I don't know'. Lastly, did you learn the power of healing touch in school? I did and it works. Use it.” - COVID Long Hauler

Key

Body Posture:  Initially I wanted my posture to show my back because it went along with the picture showing the medical community turning their backs on me.  As I am not an artist, I couldn't figure out how to draw it. 

 

Color: I chose many shades of gray for the primary colors.  Originally, I chose one shade but then I realized there are many levels of gray.    

Gray for me personally represents sadness.  Some days are more gray than others, hence the shading. 

Gray for the medical community represents that area of medicine where it isn't clear cut.  There are no definite 'black and white' answers.  Good practice is not clearly defined. 

Gray for long Covid represents those areas we don't yet understand.  Unfortunately, there is far more gray than black and white. 

I decided to add a little red to my body map.  It represents anger.  Anger at my body for getting Covid in the first place and then anger for ending up with long Covid.  Anger at the medical community for the treatment I received (or didn't receive).  Anger that my previous lifestyle was taken away. 

 

Shapes: I decided to use a dense fog road sign for my head.  I was having such brain fog.  I would forget to turn off the water or stove or forget someone's name.  Thankfully, this is almost gone. 

Starburst near the top is colored green to represent hope, health, balance, peace, growth, and rebirth.  All are things that need to happen to be for recovery 

The roller coaster named Covid Torment.  Torment is another word for hell, which this is.  The coaster shows the never-ending ups and downs of long Covid.  (Be sure to read the ticket!) 

My lungs took the biggest hit.  Doctors disagree on the testing results.  Some say they are perfect; others say there is damage.  All I know is they're not normal!  Breathing and oxygen is essential to every single thing you do so it's kind of hard to ignore when you're short of breath on and off most days.   I wanted to show in the drawing that my lungs don't feel right.  They hurt, they feel bruised, they feel squeezed. 

The rose (from my love of gardening) has a thorny vine that wraps around my lungs depicting the chest pain that happens every single day. 

 

Lines/Textures: For lines and textures, I focused on shading and blending my grays.  I chose gray to depict that area that isn't clearly defined.  If there was just one gray color, wouldn't it be the same as black and white?  There are many areas of uncertainty, unknown, vagueness, doubt, skepticism, etc.   

 

Personal Symbol: My personal symbol was the infinity symbol.  It was created in 1655 and often represents limitlessness, a close bond or eternity, I chose this symbol to describe my relationship with myself and my 'work' family.  I am a nurse practitioner, and the medical community is my 'work' family.  In my experience, there was always a bond or special relationship between each other.  You looked out or cared for one another.  It was like receiving the VIP treatment.  I worked in medicine for 35 years and only recently stopped working.  That bond was always present, no matter where I worked.  With Covid, I did not experience even a little of that extra caring.  I didn't even experience a little caring.  A disconnect has developed between me and my medical 'family'.  It was tough to see and experience over and over. 

 

Personal Slogan: SEE ME     HEAR ME     BELIEVE ME 

  • See me-yes me.  I'm right here.  Look me in the eye.  Put down your phone. Turn down the TV.   Look like you care.   

  • Hear me-yes, HEAR me.  I'm trying to explain what is going on with me.  Please don't cut me off.  Don't try to finish my thoughts or sentences.  I know what I'm feeling mentally and physically.  You are guessing if you don't wait to hear it from me.   

  • Believe me-This is a difficult one.  I have had Covid for over 11 months now and don't have the space to write down every time someone didn't believe me.  Just because you didn't experience it yourself or read about it, doesn't mean it isn't true.  Unfortunately, this increases my thoughts of sadness, anxiety, embarrassment, and humiliation.  I learn who these people are and try to avoid them.  Sadly, this also means I'm avoiding medical care more often than I should just so I don't have to encounter more disbelief. 

 

Marks on or under the skin: 

Starting from the top of the map: 

  • Primum non nocere which is Latin for 'first do no harm' which is part of the Hippocratic Oath.  Not helping is harming many. 

  • Dense fog road sign to show ongoing brain fog. 

  • Sunburst which is colored green to represent my dream of health, balance, peace, growth, and rebirth. 

  • Running girl shows my dream of running a 5K again--someday. 

  • My slogan See me, Hear me, Believe me.  This is pretty self-explanatory, but it is discussed above as well. 

  • How I see my lungs-having difficulty taking in oxygen, being squeezed and chest pain. 

  • My personal symbol which is also explained above. 

  • Roller coaster showing the ups and downs of living with long Covid. 

  • My hands showing how I see myself and how others see me.  I see myself as older and sad.  Others see me as happy and younger than I really am. 

  • Nana and Eva playing.  This is a dream for the future.  I want to play with my grandkids.  I want them to have memories of me being the fun nana, not the sick one. 

  • Faith.  It does not make things easy; it makes them possible.  My faith is ever present.  It provides comfort and strength and reassurance that I won't be given anything that I can't                 handle. 

  • Mind Body Soul reminds me that there is more than the physical body.  You also need to nurture the mind, live healthy and believe God is walking down this path with you, holding your hand. 

  • Copies of my oxygen readings.  One for every month.  Green is good.  Yellow is abnormal.  Every doctor I saw refused to look at them.  Why?  I included these to show physical evidence something is wrong.  It's not in my head! Believe me! 

  • True friendship was vital in my journey.  They are like family to me.  They have been by my side, 27/7.  I could never repay them for all they have given me emotionally. 

  • I love this quote by Maya Angelou. I am blessed to have the wonderful family that I have.   Family is everything and they are an extension of yourself.

 

Message to others: My advice to those with long Covid?  Hopefully you will find a medical person that listens.  Keep looking until you do.  Also, seek out a good support system-family, friends, others with long Covid and support groups.  There are countless support groups on Facebook.  Most important, DON'T GIVE UP.  Take it one day at a time if you need to.  This will be a roller coaster ride like no other.  Be stubborn and bullheaded so YOU can be the winner, not Covid! 

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