Tuesday, May 19, 2015

10 Lessons I Learned from Chronic Illness

9 years into my journey with "Post Viral Chronic Fatigue Immune Dysfunction Syndrome" (which has a fun mix bag of other names like Myalgic Encaphalomyalitis, the laughable Chronic Fatigue Syndrome, and the new and shiny American name Systemic Exertion Intolerance Disease), I get to review the world and my life through the lense of someone with a moderately unique experience.  Here are 10 things I hope anyone going through a rough time can find help from, in the form of commiseration, comradery, and ultimately optimism.

These 10 Lessons are in order of how I learned them :D

1. You can use your Bachelors and Masters degrees as tissues to wipe your tears from the mourning you will do over the loss of your career dreams.

This isn't true for everyone, but if you're chronically ill to the point where you can't work full time your career dreams suddenly become quite limited. I became ill at the end of my bachelors degree and knew I had to pursue my dreams in order to have a life worth living, but wasn't diagnosed until after I started my Master's degree. Even then I didn't know what that meant for my future. For a couple years after I graduated I tried to keep up with the industry events and once-in-a-lifetime opportunities but it became too much. I managed to do some freelance work as a contractor, but being in the Biz and most others requires you to put your genius into your 10,000 hours.  My can-do-work-to-the-bone attitude just wasn't going to work anymore, so eventually I took whatever jobs worked for me and experienced some great and not so great opportunities, and learned a lot.  I have some industry heroes that I look up to that work their full time dream jobs despite their chronic illness, and I still hold them in my inspiration every day. You just have to find what works for you in the moment and realize life still has plans for you.  I haven't completely given up on my dreams, but I have detached myself from how I'll come to meet them. You absolutely can and should still pursue your dreams, but let go of the need to do it the way that society tells you you should. (You do still get to keep that cozy blanket of student debt though. The only way I manage to mentally handle this is to say "at least it's still less than a mortgage...")
PS right now I have the best job ever at Conscious 2 

2. When doctors can't find a physiological reason for your illness after some basic tests, they STILL direct you towards mental health professionals.
When my dad was a kid, the doctor couldn't figure out what his asthma was so he told him it was psychosomatic.  Today, the same can happen if you have something that doesn't have a lot of scientific research behind it, and you can be sent to therapy. I'm in this cool group of sickies where we are simultaneously told we can't donate our blood or organs and I was even sent a letter from the CDC after the XMRV research asking me not to reproduce (this was later retracted and an apology was sent out to patients)... but then I also don't have a real illness enough to apply for benefits or treatments and I'm still told it's all in my head.... bizarre? No wonder I'm crazy....
  This isn't completely horrible though, as the mental health world has evolved in amazing ways and has actually really helped me to cope with my limitations.  The mind-body connection is becoming more greatly understood, and while my illness is not caused by a mental illness, managing stress and learning how to emotionally cope with the challenges of this kind of life are essential to finding happiness moving forward.  This is one of those things like eating vegetables and getting proper exercise that would help anyone no matter where they are in their life.  So after the initial anger as being written off as a head case, I embraced the options available to me and met some really amazingly wonderful people that helped me to feel enormously better.

3. The "safety net" of government programs to help the disabled is more like a flimsy "safety string".
When I was living in America, I tried to get some disability assistance.  I was denied anything I applied for because I had somehow proven myself to be too resourceful.  Thankfully my condition doesn't require constant medical attention, but my healthcare bills were still SO high with my self-employed insurance that I never had any money left for anything other than my medical bills. This is a major problem in America, and while the UK system is not perfect, the NHS will save my life if need be and my family won't be bankrupt for it.  Through this you learn one stellar lesson: Resourcefulness. I lived the stereotypical American lifestyle of uber-consumption, which since living in Europe has become glaringly obvious to me.  You can live with a lot less than you think, and it's amazing how many stories you can have in your head about your entitlement to stupid products that do nothing for your life or the good of the world. You also find that the things you REALLY want (and more importantly, need) have a way of finding their way to you.  In the mean time I'm passionate about moving towards a society that has better compassion for the sick and needy.

4. Who your real friends are, and how you have very little patience for people who give you grief.
The hard times in life quickly show you who your real friends are.  I was absolutely shocked by how many people abandoned me quickly when I became ill, and how many even accused me of being lazy or faking it. I have to admit, even some of my closest friends had their doubts at first but the point is they eventually came to see how I was suffering and changed their tune and stayed by my side.  You also become fast friends with other people you never thought you would because they have suffered like you have.

5. Meditation

 It's one of those prescriptions that's good for everyone, but particularly for chronic illness because you live with pain and discomfort nearly every moment of your life. Meditation helps you find the quiet between thoughts so you can actually experience relief. You can remove any layer of story or emotion with the physical symptoms and realize they are two different kinds of pain and you can find the peace in your mind. You start to develop a clear understanding of the dual mind, yourself and the one that witnesses yourself.  Your body, your mind, your ego, your spirit, you have different perspectives upon which to experience your life and meditation helps you to separate these and handle one at a time, and turn the dial down on the intensity of discomfort. This may or may not be a spiritual practice for you, meditation on it's own as a health practice has completely non-spiritual uses, but it's pretty hard not to become inspired in the quiet places between thoughts.

6. Letting Go
There's a point where you get so uncomfortable with how things are that it just becomes comical (literally you are sobbing and then you burst out laughing because it's all so dramatic and ridiculous). I've had so many of these moments that I'm now in an almost constant state of non-attachment.  We live in a society that thrives on self-motivation and goal oriented action. Pull up your bootstraps and grab the bull by the horns.  Chronic illness has showed me another way to be.  I still have direction and goals, but my methods are to go with the flow.  I'm less attached to specific outcomes and desires and am more able to receive what comes (and I enjoy it more because of that).  You can tell you're holding on really tight when something just keeps making you miserable and you can't find a way out of it. Sometimes there isn't a solution other than a change in perception.  That's why I'm a student of A Course in Miracles. It's a text based on Eastern and Western religious themes that funnels the lessons into psychological discourses that help you perceive the world in a new way.  So I'm not in "the biz", but my life has still had some AMAZING surprises for me.

7. Compassion
When you experience great suffering, your heart gets broken wide open.  People fear this phenomenon their whole lives, never letting their heart open for fear it will destroy them. The reality is, the worst that can happen is that you feel some pain and have a really good cry (or three... a day.... for years....) and the incredible gift that you receive through this is compassion. You suddenly feel deeply for your fellow human beings and animals and all sentience on Earth.  When you allow your heart to be broken open you have suddenly invited love you never knew to rush in. It can be overwhelming at times, but you know it when you see someone you've just met and you mention you've had a hard time and they look you in the eyes and they say " I know how that is".  It's a priceless gift that I recommend to everyone to practice compassion and opening your heart.  And one more note on compassion and having an open heart: this is not in any way a sign of weakness, but one of great strength. To be willing to feel the pain and allow it to help you grow is a massive sign of courage.

8. Miracles still exist for you
While things didn't turn out quite like I had planned (my life looks NOTHING like I EVER imagined it would!), miracles have taken the wheel and helped me see and experience things I never could have planned for.  To see the miracles you need to practice mostly the "Let it Go" part because a lot of people are so wrapped up in what they didn't get, they miss the miracles right in front of them. Non-attachment becomes the gateway through which you receive the most beautiful gifts in life. I fell in love and moved to Europe, I got to get my master's degree in an area I love and spent the best three years of my life meeting my best friends for life at UCLA (I wouldn't have applied if I hadn't gotten so ill and made the decision I need to follow my heart).  I live every day with my best friend and partner in life who teaches me the greatest joy and acceptance I've ever known, and somehow, someway, the most incredible freelance jobs have come my way that I am still absolutely swimming in gratitude for having had the experiences.  The trick is... you have to open your eyes to the miracles. Gratitude is absolutely the easiest way for you to start seeing that there are more miracles in your life than grievances.  It's more than worth the little effort.

9. Your story matters.
It's easy to feel invisible and lonely when you spend 90% of your time healing.  I've spent so much time in bed looking out the window that sometimes I feel like I know more about the trees waving at me all day than I do about the people in my life.  The best way to describe it is that my life is very slow.  I have little energy and few resources so my life moves very very slow, but it still moves. 
my favorite tee from David and Goliath

Every day my symptoms improve. Every day I'm getting stronger. Every day I receive new miracles, every day there is some joy to be had, every day the story continues.  The important thing to remember is that you have a choice about what story you tell yourself, and this is something I hope to do more work on in the coming months.  No matter who you are, you are here for a reason, and you are so important. As I read the other day; "God is incomplete without you". You are a part of the story of evolution, of the expansion of the universe, and your part is VERY important, as you, exactly as you are.

10. You are every bit as valuable as you are than if you were somehow in some other dimension living the life you "should have" had.
Facebook, as wonderful as it is, has the nasty side effect of putting us in a funk when we look at everyone else's "highlight reels".  We see the best of everyone else's life and can easily feel down about where we are in this moment.  I encourage you again to meditate, to take yourself outside of yourself and see your life as a grand moment of expression.  Even when I was working jobs that seemed quite below my ability, I went to work with the intention every day that I may be of service. I had no doubt in my mind that even though I was working below my talents and what I was capable of, I was here for a reason, I was here to learn and to be of service in any way I could be, and I knew that keeping that in mind I would be led to where I was of most use. I would be led to where I was called and I would find my joy through patience, gratitude, and service.  With this attitude my life quickly moves from good scenario to better scenario, and even though I'm not where my fellow 30 year-olds are in life, I have a good life and plenty of joy, and I know that I am not sacrificing one bit of my integrity to live it.  Your value is not summed up by your salary or assets, it is decided by the purity of your actions and the clarity of your intentions.  

Brightest blessings, I hope you feel better every day.

No comments:

Post a Comment

Related Posts Plugin for WordPress, Blogger...