Living with an invisible illness

Greatest Pains Lead to Greatest Strengths

For years I just wanted to be woken up from a nightmare.  I went from being an extremely active and social college student to someone who couldn’t get out of bed for months at a time.  Being diagnosed and living with Chronic Fatigue Syndrome was extremely challenging and tested me on every level.  Even though, in my mind, it seemed like Chronic Fatigue Syndrome was the worst possible thing to live through, in reality my life was becoming far richer than I could have ever imagined because of what I was learning through it all.  I wouldn’t want to go through life without the invaluable lessons learned and the way it shaped me into the person I am today.  Someone once said, “In the end, some of your greatest pains become your greatest strengths.”  I couldn’t agree with it more.

This is what I have learned:

Philosophy of Life

When you go through something like a chronic illness, you learn really quickly that life is far from perfect and completely unpredictable.   A couple years into the illness, I realised that I didn’t want to spend my life fighting my reality, which was that I was at a really low level of health.  Life goes on regardless and I could either be frustrated with my situation everyday or I could learn to find the beauty and good in it.  My grandfather, who has been one of my great inspirations, wrote a book of quotes that he had collected throughout his life.  He encouraged and inspired me to develop my own philosophy of life.  The first thing is recognising what I have control over versus what I don’t have control over, and I can only control my reaction to the latter.  The second thing is choosing to see every challenge in life as an opportunity to learn and as something that only makes me stronger.  Everyone should have their own philosophy of life to keep them on course through all the ups and downs of life.

Inner Strength

Being deeply challenged on a daily basis forces you to find your inner strength.  Not only do you find your true motivation and purpose to continue to keep fighting everyday, but you also learn that you and your voice are the most important thing in your life.  This is especially true with Chronic Fatigue Syndrome.  When you have a condition that is greatly misunderstood by most, you learn that everyone is always going to have an opinion and you have the choice to decide whose opinions or advice you are going to embrace.  Yoga was something that helped me focus on my inner strength.  It taught me to how to remain connected with who I am at my core and it carried over to all areas of my life.  It’s finding that strength from within is what is important and learning to not be so affected by the opinions or expectations of everyone else.  A great quote that embodies this is, “The world accepts you at your own evaluation.”

Follow My Heart

Everything had to be put on hold when my health deteriorated.  But it was actually a blessing to have the time to reflect on life and myself.  Life moves so fast and we can easily get caught up in things that aren’t so important.  For the first time, I had the opportunity to turn inward and figure out what was truly important to me. I used to live my life based on logic.  I have a pretty strong mind that was always really good at telling me what I should do, but I was completely blocking out my heart and the things that touched my soul.  I always felt pressure to live up to other peoples’ definitions of success and to choose a career that automatically guaranteed financial security.  But deep down I knew I wasn’t going to be happy on the path that was expected of me.  I started to trust my heart to guide me, and the world began to open up in amazing ways.  When I finally started to regain my health, I didn’t want to waste a moment.  I started focusing my energy, time, and goals on the things and people that brought me a lot joy and fulfillment.  It made me come alive.


Having so many days where I couldn’t even move made me appreciate everything I did have in life.  When you can walk, talk, run, and eat everyday, you don’t really think of those things as blessings.  You take them for granted because it is all you have known.  When they are gone, you start to see the beauty in all the little things in life, which are actually the big things.  Every time I was able to do something, whether it was getting outside in nature or having a conversation with someone, I was so grateful for it.  The first big outing I had after being bedridden for four months was a baseball game with my family.  I was amazed to be out in the world again.  We sat high up in the stadium with vacant seats all around us.  The sight of all the empty seats made me think about all of the people who didn’t have the ability to physically go to a baseball game.  When you start to have deep gratitude and see beauty in the simple things in life, life becomes really rich and meaningful.

Living in the Moment

For so many years, I watched the world around me move at a rapid speed.  I watched the people in my life start their careers, go through graduate school, get married, move to new locations, have kids, and I was just thinking to myself, “I’m just trying to get out of bed in the morning.”  The majority of my life for five years was spent within the same four walls, just trying to survive.  That clearly changes you.  I deeply craved life.  And so as I began to gradually improve, I became so focused on the present. I realized what a blessing every experience was and I soaked up every moment fully.  The world is full of distractions and stressors, but I found that living in the moment is one of the most beautiful things you can give yourself and the people around you.

Deep Compassion

Living with an invisible illness teaches you that you really have no idea what other people are going through.  I looked relatively fine on the outside, but most people who saw me were not aware of the huge amount of effort it took for me just to stand and try to maintain a brief conversation.  During quick interactions with people, I would be telling myself not to pass out, holding back tears because of the relentless pain throughout my body, while trying to focus on the conversation, which was mostly a lost cause because my mind would often just go blank.  It opened my eyes.  I began to see people not based on little things, like if they had an aggressive reaction to something, but to see them for who they really were on a deeper level.  Everyone has their own struggles in life and everyone is just trying their best based on their level of consciousness.  I realized judging myself or anyone for anything is not the way to live.  We should be embracing each other, giving out love and support to everyone we meet.  We are all the same.  We are just trying to deal with our own life circumstances and challenges.  Compassion for another is the most beautiful thing.

Guest post from Online CFS health member Erin Enright, USA.

To join Erin and 500+ members to the online recovery program – Apply in our online chronic fatigue syndrome recovery program section.

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