The Invisibility of Chronic Illness

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I consider myself healed and healthy now.  These days, I do not think about my days of chronic illness unless I am thinking about ways I can use my experiences to help other people going through something similar.  No doctor has ever deemed me cured from Lyme Disease and the other tick-borne infections I was diagnosed with, but at this point in my life I do not feel that I need anyone else to tell me that I am cured.  After all, it is me who knows the pain and suffering that I endured, and so it is me alone who knows that reality in contrast to how I currently feel.  And I generally feel AMAZING!  Because I have come to know how powerful our minds and our thoughts are, I have come to realize how curing and healing it is for me to think and live my life as if I am cured.

When I open up to someone about my days with chronic illness where I could not walk to the mailbox, or when I was dealing with severe depression that made life feel so so hard, they are always surprised.  I hear things like “I can’t imagine YOU being depressed!”  Well, there is no one way that chronic illness looks.  There is no one way that depression looks.  Being someone who has come through both chronic illness and depression, the way that I now move through the world is a direct result of knowing first-hand, the stark contrast of what true dark and true light are in this life.  Nothing can be labeled as “good” or “bad” because the Universe (God, Spirit, The Creator) is always giving us what we need to grow and evolve.  For example, in 2009, if asked, I would have labeled my illness as “bad.”  Today, I am telling you that I would label that same illness, and all that went with it, as “good.”  Everything is relative to our perspective.  Sometimes, as we are living through something, we lack the perspective of the bigger picture because we are so focused on the moving parts.  But, as our life shifts, often we can glean lessons learned and life perspective gained.  And it strengthens us as people.

I was speaking with someone in the throes of chronic illness this past Sunday.  As we talked, I was reminded of how misunderstood I felt in the thick of my illness.  While I was about 40 pounds over my usual weight because of the prednisone I was taking daily, and had the classic prednisone “moon face”, and hump on my upper back just below my neck, to everyone else, I appeared “fine.”  After all, I was not riding around in a wheelchair, I was not hobbling around on crutches, I was not carrying around an oxygen tank, and I was trying really hard to live my life normally and just do what I needed to do.  I met a lot of new people during that time in my life, mostly because it is then that I went back to school for Nursing.   I remember feeling the disappointment of having not gotten off of the prednisone in time to lose the extra weight before meeting all of those new people.  It felt odd to me that people would be meeting me for the first time while I was living in a body I didn’t recognize as my own.  I was not able to do so many of the things that I had been accustomed to doing.  I felt nothing like myself, yet only those closest to me even knew the contrast to how I had looked and lived before.  And even they couldn’t REALLY understand what I was going through at the time.  So in a lot of ways, my illness felt invisible, and a lot of the time, also felt invisible.  The real me felt buried under layers of fat and tissue, doctors appointments, and pills. The real me felt stunted by the pain that would come seemingly so randomly that I was afraid to do anything that required any amount of exertion.

So, I heard the pain and saw the tears of this person in the throes of illness recently who expressed how misunderstood she was feeling, and I was transported back to that time in my own life.  When I was dealing with serious gaps in my memory, I’d have people say things to me like, “yeah, I forget things all of the time too.” As if their occasional forgetfulness compared to my level of constant brain fog, so dissimilar to what I had been used to that I spoke it out loud.  Or in times when I was dealing with a chronic fatigue so severe that my body forced me to choose sleep over studying or doing other things that I wanted or needed to do, and people would say “yeah, I get tired too.”  Even my doctors tried to downplay my fatigue by attributing it to having a baby and being in nursing school.  And it made me want to SCREAM!  I felt completely unheard, misunderstood, and alone in my suffering.  I did not want them to “fix” anything for me, I just wanted to feel heard and understood, or at least I wanted my concerns to not be downplayed by others or equated to the normal struggles someone faces in life. It’s like everyone around me had suddenly forgotten that I had just been living a “normal” life without illness, so in fact I did understand the level of forgetfulness and fatigue that was just typical of being human vs what was stemming from the havoc that multiple types of foreign organisms were creating in my body. I had cared for my baby for 6 months prior to getting ill, so I knew the contrasts of varying levels of fatigue.  And prior to going back to school for Nursing, I had been a student who had earned a Bachelor of Science.  I knew how tired being in school full-time made me feel.  Living was not new to me, illness was.

Above all else, I wanted to be seen and heard.  We all want to be seen and heard.

And that is exactly what is lacking for so many people challenged with chronic illness.  Their well-meaning friends and family tend to either want to “fix” things for them and stand by wishing that things were different, or they downplay their experience and just how hard it feels.  Most people are not equipped to handle the emotions of someone walking through the flames of chronic illness.  It makes people uncomfortable.  They don’t know what to say.  They don’t know how to act.  So they pretend that everything is fine. Or they distance themselves from the person. Or they get stuck in the wheel of repetition where they ask how and why this could have happened to the person.  But none of these approaches are actually helpful.  

My time spent dealing with my own chronic illness for all of those years coupled with my years of experience of being a Registered Nurse working in the hospital has given me a unique perspective.  Not only do I understand first-hand what it is like to live with chronic illness, where rather than dreaming up the next travel adventure and plotting miles to hike, I was scheduling doctor appointments and tracking the number of pills I needed to take in a day.  But, as a Nurse, I also understand that my struggles were not dissimilar to the challenges faced by countless others.  As I have written before, we really are all the same.  As a patient, I wanted to be seen and heard.  I did not want people to fix me or my problems.  I did not want to hear about others’ woes of a normal amount of exhaustion, or normal times of forgetfulness.  I wanted to be seen and heard and comforted and loved.  As a Nurse, I have been able to use this knowldge to be there for my patients and to hold space for them without trying to “fix” anything.

I was lucky enough to be put on call for work this past Sunday, and was able to make it to the morning service at the local Center for Spiritual Living where Reverend Barbara Leger was a guest speaker.  The part of her talk that really moved me was when she spoke of a dream that she had where she saw a little baby in a high chair who was screaming and pounding the tray.  When she asked him what he wanted, he said “ice cream,” so she gave him ice cream.  In the day that followed, news was flying all around the TV of the events in the US on September 11, 2001.  At one point, she saw a man’s face on the TV, she asked her friend who it was, and they told her that it was Osama bin Laden.  In that moment, it clicked with her that he had been the baby in her dream.  The point that she made that moved me to tears was this:  we are ALL seeking comfort and love.  ALL of us, regardless of who we are.  Reverend Leger urged us to go into our day finding ways to be love in the world.  To let go and forgive ourselves and others so that we can be the love that we came here to be, because the world needs more love.

From where I am now on my journey, if I had a magic wand that could go back in time and erase the pain and suffering that I experienced because of my chronic illness, I would not use it.  The level of gratitude that I currently live with is far more valuable than the moments of being pain-free that I would be trading it for.  My loss of health is what causes me to want to live so fully.  It’s what causes me to so fully enjoy the people and experiences I have in my now while I have them.  It prevents me from sweating the small stuff in life.  It drove me to become a Nurse, so that I could use my experience to help other people.  And essentially, it is what has driven me back to the knowing within of who I came to this world to be.  

As Abraham Hicks says often, “you can’t get sick enough to help sick people get well, and you can’t be poor enough to help poor people become prosperous.”  

“There’s a tendency to come from a place where you see suffering and then feel unique and maybe unworthy about you being extracted from it and having all these blessings.  And when you feel that way, you are not a perpetrator of more blessings.”  — from Abraham Hicks: Don’t Suffer Anymore, Just Believe!” on Abraham Hicks Pure Joy YouTube Channel HERE

Adjusting ourselves or how we operate in the world with the false notion that it will help others if we dim our light is not helpful.  Nor is it helpful for us to try to make someone else change how they are operating in the world to suit us.  It will never make anyone feel better to live this way.  Trust me, I’ve been blessed with the contrast in my life to try all approaches on both sides.

Offer your love to someone going through a tough time.  Be there for them.  Listen to them.  Offer them a hug.  That’s all they need from you.  And isn’t that refreshing?  That you don’t need to find solutions for them?  Or empty promises for a better tomorrow?  Just be there, being you, and allow them to be there, being them.  No more, no less.  

I was able to do this for my friend on Sunday.  I knew that they were having a rough day before we spoke, because they had texted me earlier.  But I approached them with my full energy, because I was having a wonderful day.  And I knew that I could not make them feel better if I brought myself down to their energy level.  I listened.  I offered suggestions when asked for them.  I held space for this person to feel the way they were feeling.  I commiserated with them on how difficult it is to live with an invisible illness.  I offered them my current perspective.  They got inspired.  They felt heard and seen.  And THAT’S where the magic happens. I saw some of the heaviness in them lift.

I feel called to use the experiences that life has given me to help others on their own paths to healing.  I do not believe in coincidences.  I believe that everything has happened in my life to get me to this very moment with my perspective and my skills, so that I can be the love and light in the world that I came here to be.

If you or someone you love is struggling with illness, and you are ready to take full responsibility for the health of your body, mind, and spirit, I am here to support you on your journey.  Luckily, with technology, we have computers and phones that will help us connect regardless of where you are in the world.  My intention is to support you as you learn to view your dis-ease as a valuable teacher and precursor to living your life with more joy and gratitude than you have ever known before.  Reach me at peacefuljellyfish@gmail.com.  I’d love to hear from you! 

From the other side, I can tell you that you can heal.  You cannot get your old life back, but you can get one back that offers you more gratitude and appreciation for all that you have and all that you are.  Be well. 

If you liked this post, please like and share it!  

Listen to Michael Franti’s “Everyone Deserves Music” HERE

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