Welcome! ... What is it like to live with a chronic illness?

Dealing with any chronic health condition, and/or illness, can be a daunting task in-and-of itself. While there are numerous aspects that affect one's everyday functioning and survival, one of the greatest frustrations is the lack of understanding, compassion, and tremendous judgement experienced by an individual struggling with any chronic health problem. While it may be difficult to relate to someone who battles a chronic illness, it is so important for those on the outside looking in to make their best attempt to understand their loved one's challenges.


Several years ago my mother stumbled upon a wonderfully written document called "The Spoon Theory." This piece details what it is like to live with a chronic health condition in simple and relatable terms. In my opinion, it is a must-read for anyone whom is seeking to better understand what it is like to live in a body which is chronically ill.

Trust me ... this piece is enlightening and extremely insightful.


This blog is a commentary on my own very personal, and sometimes very painful and challenging journey, with chronic health conditions (including the auto immune diseases Psoriatic Arthritis & Ankylosing Spondylitis, Fibromyalgia, Hashimoto's Disease, Hyper-Mobility Syndrome, PCOS, as well as a spine condition called Spondylolisthesis), and the medical system. While I am not a doctor nor a medical professional of any kind, I am most definitely one very experienced patient! My hope is to share my gained knowledge and experiences with others who deal with similar issues.

Popular Posts

Monday, October 17, 2011

Thrown Off Course By Chronic Illness ... A New Path To Something Beautiful

Everything I have experienced in my life has contributed to the goals and dreams I once held for my future, specifically in relation to my career(s).  Just as I have grown, changed, and shaped as a person, so have my hopes for the future, with my plans and expectations molding and altering with every step I took in search of that ultimate destination we seek call "success." 

I, like many other little girls, held many big and lofty dreams, and true expectations for my future career and life. And, like most little girls who are asked what they want to be when they grow up, my answers frequently skirted along the lines of becoming a veterinarian or doctor, and one cannot fail to mention the fantasy careers like that of a professional ice skater, a beauty queen, or an actress. I even dreamed of becoming a cat resuer and cat "rancher." Whatever that means and entails, I am not quite sure, but it sure sounded good, and honestly, it still does. 

We dream big as little kids. Our entire life lays before us with a plethora of opportunities and a seemingly limitless list possibilities. The world is at our fingertips, and by all regards, it is ours for the taking. We aren't yet damaged, nor so severely affected by many unforeseen, and often unavoidable, life traumas at that point in time (at least the majority of us still fit nicely into this category. Unfortunately it's not always the case for every child and trauma and tragedy strikes at a far too early age). And, if we are raised in a loving and supportive family, by caring and encouraging parents, we are by most accounts, children with countless dreams which have taken strong root for a brilliant future reality. 

I was fortunate to grow up in such a household. I was encouraged to do whatever I wanted; to shoot for my dreams, whatever they may be. I was told that I was smart. I was given confidence, a well-rounded education, and the love needed to grow into an intelligent and capable adult. All systems were a-go, but there was one thing neither myself nor my parents expected to affect nearly every aspect of my life, my body, and my future: My ongoing battles with health conditions. Of course, even with a health condition, we still have dreams, and we are still capable of obtaining those dreams, just in a different way, and typically, by way of a severely detoured route, so to speak. Although, I don't think anyone can truly prepare for trauma to the body, mind, spirit, or life in general, especially in the younger years of life. And while such extreme events and circumstances are capable of robbing many things from your future dreams, they also enrich our lives and our future's in ways which we would have never anticipated nor intended. 

As I moved past my surgeries, and into my late teens, I began to think seriously about my future and what I wanted it to look like. I am not trying to brag or sound trite when I say that I knew I had many talents, skills, smarts, capabilities, and the opportunity to be whatever I wanted (aside from a professional athlete or something in that realm). I think all in all, I simply had a healthy dose of self confidence, and that's definitely not a bad thing in my book. 

My families' careers centered around both areas of law and psychology. I am a Libra, and therefore, also have a natural attraction and inclination for both subjects, although I must share that I was initially dead set on avoiding both feilds of work. After all, these areas are what defined my parents' individual selfs within a career model, and just like every other kid, I was desperately seeking to become my own person. 

For a few years I tended to resist both, even as the smallest glimmer of possibility. I then made the decision to pursue several aspects within the health world; more specifically, natural medicines and various holistic type therapies and practices. I wanted to offer a combo platter of sorts, which would encompass the many facets of the health and wellness concept as a whole. While I pursued my AA & BA degrees in Psychology for a foundation, I began dipping my toes into the worlds of personal training, nutrition, massage therapy and reiki energy work. I then began to look at becoming a ND or Acupuncturist. As I moved through my last two years as an undergrad, I found that I could no longer resist my natural talent and general interest for Law and Psychology, and felt that my future was meant to entail something from each area. Combining the two subjects seemed ideal. I then made the decision to move towards becoming a PsyD within the world of Forensic Psychology. My ultimate goal was to attend grad school in a dual program for my JD and PsyD. 

Yes, I had set the bar high and felt a strong need to prove myself to the world, .. and perhaps maybe even to myself. Something of a lofty and impressive (not to mention a very time & energy consuming and finanically taxing) direction to take. Just like many other students experience, I had some serious doubts about myself and my decisions. Worries over money, in addition to an ever-increasing anxiety centered around my general capabilities and intelligence levels, began to overwhelm my thoughts. A large nagging question remained in the back of my mind: What if I did it, and then decided I didn't want to be a Psychologist and/or an Attorney? Then what? I am first a failure - both to myself and my family - in addition to a laughing stock, with the subsequent ever-dreaded sense of guilt layered on top. So, with lingering confusion upon my graduation, I did what I thought to be the most "responsible" plan of action and direction. Instead of jumping directly into a graduate program, I obtained my counseling license, which was quickly followed by a job at a treatment center working as a counselor with children (my official title was quite hilarious, making me sound much more important than my true position entailed ... I was labeled an "Intervention Prevention Specialist Counselor," a mouthful, I know). I hoped that this experience would provide me a better sense of myself, what I should and could do, and in some bizarre way, assist in "fail proofing" me and my future. 

My main goal and hope was for the clouds to part, the sun to shine down with brillant clarity, and with one swift movement, I would be enlightened as to what path to travel at this large, and oh so important, fork in the road of life. Did I want to be in the world of law and/or psychology? Did I have the stomach for it? Was I too compassionate? Did my body have enough to give to keep me going through both an intensive graduate program, then onto a high stress, high intensity job position? All answers I was unsure of, and kept me from moving forward from both my law applications and my psych grad program applications for the time being. Of course, life is never that uncomplicated, and there were other factors at play, but I think you get the picture.  In a nutshell, I was frustrated, confused, fearful, and somewhat lost. I wanted to be so many things ... I wanted to use all of my talents, enjoy my multiple loves and passions, ..  And I most definitely did not want to make the "wrong" decision, and think "what if?" Of course, as we age we learn the big life lesson that we will always make the wrong decisions at times, and that ultimately it only helps to shape us in ways we never anticipated. But, the younger we are, the more challenging this concept is, and it's one which is truly  hard to "get." 

I have always been a person with a strong sense of intuition. But, when it came to this matter, for some reason I was so stuck that I couldn't even decipher how to follow my intuition and heart, as I simply didn't know what it was telling me at that point in time. I was recently reminded of a quote by Steve Jobs which truly encompasses this struggle. During a commencement speech he said the following: ""Don't let the noise of others opinions drown out your own inner voice ... have the courage to follow your heart & intuition, they somehow already know what you truly want to become." I thought this was a profound statement, one that most certainly embodies much of what I was feeling, and often still hovers in the back of my mind. I was incredibly overly concerned with everybody else;  specifically what they thought, what they were worried about and what they wanted me to do. I am a self professed "people pleaser" after all, and while I have actively and consciously worked on that flaw for the past 10 or so years, it's always been something of an issue, and sometimes a true road block for my forward movement in life. 

Now, just like with anyone's life, there's always layers of issues occurring at any given point in time, and I am no exception to that rule. More specifically, I am saying that it was not only my internal battle which affected that point in my life, as much much more was going on, although what exactly, and to what degree, were two things I was not clear on, even within my own head. That first year out of college is when I truly began to experience the downfall of my health status. I still kick myself for not going to grad school right out of the gate, getting it done while I felt well enough to do so .. and heck, maybe I could have distracted myself from my symptoms. But, in reality - in that never failing, crystal clear thing we refer to as hindsight - I know that I would not have made it, strictly on a physical basis. And the fear there was simple. Put simply, I would be stuck with massive student loans, unable to complete my degree, unable to get a job in that field, and unable to pay that money back. Virtually drowning in a lack of money and a chronically sick and pained body. Something that doesn't sound like a great circumstance by any stretch of the imagination. 

It took over 4 years (probably more like 5. or even 6, when taking into consideration how long those diseases have likely run amuck in my body) to get answers; a diagnosis, or rather diagnoses, for my auto immune diseases. I first began to notice a few symptoms in my mid-twenties, and with time passing, they only increased in both number and degree. The official diagnoses were given at the age of 29, almost 6 months to the day before my 30 birthday. I have spent the second half of my twenties sick, seeking help, and lost in the world of basic survival. It's interesting to recognize that the same sort of battle scenario occurred for my spine condition as a little girl. And in both instances, my world was forever changed; leaving me with a "new" body, a very different life, .. even something of an altered character, personality, spirit, and mind. By all accounts, I was transformed and shaped into something a bit different than before; a person redesigned by the trauma endured. 


We all have dreams, plans, hopes, and even expectations for the future. And while these things never play out exactly as we dreamt of, still, we generally see something of the life we wanted unfold perfectly imperfect as time passes. Each stage of our life appears to be dedicated to various goals, learning lessons, and life stages, and when these plans are completely thrown off course, we are left to pick up the pieces, find new perspective, clarity, and start again with something new ... with something which better suits us, and compliments our state of mind and body, .. and then we grab for new hopes and dreams and redesign our journeys. 


Eventually our life journeys, and the subsequent experienced traumas, begin to affect us in profound ways and we must step out of the box  we once built for our future and take the first step on a new path. Sometimes we are thrown curve-balls and roadblocks appear at the least likely locations.  We must make a choice to either climb over, go around, or completely destroy what lies so stubbornly in our path. And sometimes, when none of the above are possible, we even find ourselves slamming on the breaks of that proverbial car and throwing the "vehicle" into reverse, in search of a brand new road, and onto uncharted waters possessing tremendous potential awaits us ... Why do flip a 180 and run because of human nature and the most primal emotions? Perhaps out of fear. and other times, this drastic about face may be accredited simply to exhaustion, or even a sudden lack of interest. I've wanted to be a great many things in my 30 years on earth. I've felt both confident, completely defeated and worthless. It's hard to separate what the correct and perfect path is, and while it all too often seems our inner self knows exactly what to do, we press mute on that little voice and allow fear or the opinions and influence of others to determine our actions. Again, maybe this too is simply part of the learning process, but it certainly makes for some complicated life decisions, regrets, and if we allow, resentment. 

Sometimes I feel like a complete and udder failure, an embarrassment, not to mention incredibly ashamed and guilty. I want so much for myself and my future. I want to share myself, my skills, my knowledge, and I want to make a difference and actually derive joy and satifsfation from my careers and life. Yes, I do have several "titles" now, but none are complete, and I feel so far from the person I hoped to be in the aspect of careers and overall future successes. I would still love to have several seriously amazing degrees, specifically doctorates in psych and law, and even a MD. I'd also love to have a degree in journalism and a masters in therapy/counseling. I want so desperately for these years I've spent sick and trying to just get through the day, to mean something. 

I want to prove to everyone - but most importantly to myself - that I am still the girl everyone thought was going places, to be amazingly accomplished and successful. I want so much, yet I sit in frustration and anger, .. resentment and guilt ... worry, ... and so much more negativity.  I try to beat down these less than desirable feelings from my life; to irradicate them from my very being and existence, as I know they do not serve me. But, on the other side of the proverbial coin, I still feel so very lost, and I often wish I could jump out of this body, this ridiculous illness, and replace it with a healthy model and pursue my dreams with all the gusto I feel in my heart and soul. 

1 comment:

  1. You may have several "Titles"but the most importan titles that you can carry is...Friend.
    No matter how you might feel about the other fields that you travel in on your journey through life you do not fail as a friend,you encourage and help a friend in need, you have always have a kind word, you have never lied that I know of, and your words bring a smile.You may have that doubts and fears that you mentioned in you post but do not, do not ever think you have failed as a friend.A friend is one that if you get yourself in deep deep rouble and you end up in jail...you say damn we had fun didn't we as you sit beside the person.Yes you are and have been a good friend.You have lifted me when I was down. Cheered me up when I was said.Let me know when I was off track. No, don't ever think you have failed , at least not as a friend. The rest sounds a wee bit like you are feeling sorry for yourself, which you have every right to but please , as a friend , I ask you to not dwell to much on those feelings. You are bright, knowledgeable young lady who writes beautifully and I for one am very glad to know you. Good Luck on your endeavours and may God Bless

    ReplyDelete

Please feel free to share your thoughts, stories, comments or ask questions here regarding your journey with chronic illness.

About Me

My photo
My interest for all things related to health & illness arises from my own struggles with chronic health conditions. I have found it most therapeutic & empowering to write about my many experiences within this realm. Through education, my own research, and my ongoing personal challenges, I am teaching myself how to become my own best advocate. To learn more about me, please see the page entitled "About Cat" located at the top of the page. If you have any questions or comments, you are welcome to contact me through the "about" section listed above, or email me at healthandillness@gmail.com. Please note that this address is also linked through my profiles. Blessings of health, energy and peace.

Questions? Comments? Use the Contact Form or Email healthandillness@gmail.com

Name

Email *

Message *

Comment on Advocating for Health ...