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.

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My Health & Illness Chronicles


One of the bigger lessons I have been taught repeatedly while dealing with chronic illness is simple enough; it's a funny thing we call balance. Learning how to NOT overdo things when I do have the energy to accomplish everyday tasks and life's more complex challenges alike. And it's something which is so much easier said than done. Such anxious and frenzied rushes to "get things done," are specifically in attempts to make up for the wasted time which has gotten away from me, and that time slides away with great speed and ease, much like sand sifting through an hour glass, picking up speed with every passing moment. So much time and pure "life" feels wasted, robbed, and sadly forgotten, for lack of better words, during those all too common and frequent periods when I feel so horrible. This lesson has not been an easy one. It sounds so simplistic, yet for me, for whatever reason, it is so very complicated and a huge challenge. It's frustrating for sure ... it's even overwhelming at times. It seems as though every aspect of my life is fraught with this battle, and I cannot begin describe how very disheartening it can be. Even when it comes to writing, blogging and working on my websites, all things I love to do and bring me some sense of normalcy, success and productivity, I am faced with this ever present battle and I'm getting so very tired of it! Can you hear my pure and obvious irritation?!? LOL ... Yes, I believe I've thoroughly expressed it. And, I am fairly certain that you can relate to this internal tug of war as well. 

Plain and simple, I have been experiencing writer's block recently. And, while my life, and all of the battles within my war with the medical system, my body, my life and my health, continue marching forward, I feel even more frozen than usual. I feel this strange, and albeit, an unsettling combination of sensations where I have so much to say, so much to share, but no words to properly and completely express my many emotions and experiences. I want so desperately to use my life, and all of the things I have endured as a result of my health struggles, to be both a means of finding some sort of healing for my mind, body and spirit, as well as a vehicle to reach that ever elusive feeling of success, self satisfaction, and a greater life's purpose. While I am both encouraged and strengthened to see and hear so many other's stories similar in nature to mine, in some strange twist, I feel more defeated, unneeded, and no longer unique and special in what I have to contribute to this world. A strange jealousy factor without a doubt. One of which I feel guilt and confusion too.

You can feel so alone when you're chronically ill, especially when you're so young.  As a way of finding some hope and understanding, reaching out to others whom also find themselves similar circumstances, can be both empowering, in addition to ushering in some relief from that ever-present sense of loneliness. But still, even with the smaller victories, those "good days," the brief glimpses at the smallest peak of light near the end of the dark tunnel, even with the occasional cheerleader found in the most unexpected person, place and time, the sadness and uncomfortable silence is palpable. I guess one could say that I've been feeling somewhat depressed as of late. A state of mind and being which I am not one to admit so quickly. Perhaps I'd rather tell myself something different than what my inner self truly feels. Whether it's a way of remaining positive - a fake it til you make it type of thing. Or more simple in terms and listed as basic denial. Maybe it's more likely something of a combo platter. I am not entirely sure. What I do know is that it's a sense of melancholy and fear which I cannot seem to put my finger on. 

We all need something to look forward to, some excitement and joy in our lives, and when reviewing the last few years, I can securely state that the much needed sense of happiness, peace, excitement and/or thrill for life has been lacking in my world of simply surviving. Some days that "simply surviving" mind set is enough to consume me. I don't want that to be the case, nor do I look to make it happen, but it does exist. I find myself unable to look forward, maybe because I am still stuck wadding through my past. I try to just be in the moment, just make it through, making a conscious effort not to dwell on all that's been lost to the days gone, but also unwilling to gaze into the future, as I find myself overwhelmed by too many emotions to count. Other days, perhaps even the ones where I feel a little better, I feel so lost and scared, wondering if my life will ever be more than just surviving to another day. I think anyone who loses so much so young can relate to that kind of desperation. At least I'd like to think so. Whomever created the saying "sick and tired of being sick and tired" was very brilliant, as I am beyond sick and tired. 

We do have a tremendous impact on our own health, our body, mind, spirit, attitude, future's, so much of our lives and even a bit of others' lives as well. And while we can attempt to steer in a certain direction, as a simple fact of life, we do not have control and power over everything, in fact, we seem to have only a little power and control over a few things ... the rest, left up to fate, destiny, random events of reactions for each action, and a great many other beliefs, concepts, and philosphoies. I apologize, my intention for this post was not to get too philosophical, although for whatever reason, I am tittering on the edge of that broad, questionable universe. Anyways, my point was to transition to the subject of dreams and how they are clearly intertwined with my ever-evolving nutty life and existence. For a while I stopped having dreams, if not simply because I asked for just that - not to dream - as it was just too much on top of everything else. Funny thing to say and hope for, huh? Recently I began dreaming in my slumber once again, and strangely it's only increased my sadness. Perhaps because I am dreaming of things I wish I had, things I feel slipped through my finger tops, things I once nearly had as  a reality and lost with tremendous resistance, only to break my heart into tiny pieces for years to come. I often find myself thinking that when I'm better, when I feel normal, healthy, you know, like a normal human being again, I will be able to reach for those dreams, to heal those relationships, to have all I ever wanted, dreamed of (literally I suppose), and anticipated. Sometimes these visions bring me joy, promise, hope and inspiration, ... and then other days, it's quite the opposite, and I awake even more fearful, depressed, anxious and sad than before. I know dreams are said to be the mind and spirit's way of processing events and feelings in one's life, at least that's what I tend to believe. Some of those dreams feel so impossible now, so far away, so unlikely, and well, that only generates more sorrow to further envelope my already exhausted and lost being. 

This post was not created with the intention of being so solemn, but it certainly appears to have gone that path, doesn't it?!? As I've stated many times before, my hope for sharing my experiences and subsequent emotions here is with the desire to help others, to offer some hope, and even some true knowledge that if you're facing similar battles at this moment in time, you are not alone, even when it feels as though you are living in a deserted waste land of illness, loss, misunderstanding, hopelessness, and desperation for some real life. Not just a life where you are simply surviving to make it to the next day. I know my words, my attempts to touch others lives', is nothing close to that of a magical cure nor a fix for what you may be enduring at this very moment. I wish it was. I wish I had a magic wand. 


It took over 4 years to get an answer, a diagnosis, or rather, diagnoses, for my auto immune conditions. After seeing one doctor after another, finally, on April 11, 2011, I found the doctor who would bring many of my puzzle pieces together, forever change my life, provide much needed answers, and finally, validation of my health battles and a direction for hope. I am told I have two sero-negative auto immune diseases: Psoriatic Arthritis and Ankylosing Spondylitis. Both help to explain a number of my symptoms and many years of suffering, although there remains a few question marks; symptoms which do not fit into the category for either disease. So, with that, my Rheumatologist has hinted and suggested that there's likely a third, although those answers are on hold for now. Getting these diagnoses was like a victory for myself, for my life, my body, and even for my past. 

As a little girl I played many sports. Everything from volleyball, softball, tennis, gymnastics, dance, ice skating, and my most beloved, soccer. I was very active and loved being competitive. I felt great pride and accomplishment through both my own self and by way of other's reactions to my achievements in this arena. I also desperately wanted to please everyone, adults in particular. I was raised within a society which told young people not to question authority, not to doubt the opinions, beliefs and statements of your parents, teachers, and of course, the doctors. Some kids seek attention by doing negative things, I wanted the opposite; attention and praise for the positive things, and I sought it out as often as possible. So, of course as a young child and teenager the last thing I wanted was to disappoint someone, especially the adults. I wanted to make them proud and happy, not ashamed and angry. Being an overly sensitive person only increased my reactions to things, and I clung to every word, hand gesture, even facial expression, worrying constantly that I have done something wrong to make another mad, disappointed or upset in some way. 

When the pain started in my low back I was only 9 years old. I had yet to go through puberty and didn't have a full understanding and ability to recognize my body, but one thing I did know for certain: I was in pain and a lot of it. At first it came intermittedly, brought on or aggravated by more aggressive activities and sports, but I didn't pay it much attention and left it at that. As the pain and overall discomfort grew worse I was unsure if this was simply how everyone else felt in their body, and while I did say I was in pain, I only did so rarely and quietly, as not to upset or worry anyone. As time passed the pain became to much to bare when it came to playing sports, the last to go was volleyball. I remember the last day I played the game in fact .. I was good at it and the team looked to me to be a good player, and that day's pain was beyond horrific. I had to leave half way through and didn't live up to my typical abilities. My parents, especially my father, didn't understand why I needed to stop, and frankly, I wasn't sure why either, I just knew I was in great distress. Just like the rest, I gave up the game of Volleyball, with many thinking I was being lazy, or at least that's what I perceieved, especially since my doctor's had repeatedly said I was fine after each visit I came and complained of pain. Turns out those doctor's knew exactly why I was in pain, but didn't do anything about it ... although one later wrote in her notes that she was surprised I was still able to walk due to my extreme condition of Spondylolisthesis ... yet not one word of confirmation of my pain and complaint. I still wonder if that doctor simply hated me, as why would anyone with half of a heart allow a child to continue forward without any help knowing the severe and probable consquences of my condition? I can't answer that question. I don't think I will ever know, but it's always remained in the back of my mind, and in the pit of my stomach. She later went back and revised my records to make herself not appear at fault ... simply to save her own ass. The other doctor's made my x-rays, three years worth, vanish into thin air .. leaving no record, no footprint of me and the progression of my life altering condition. Both doctors got away unscalthed, able to continue practicing medicine. Sickening. 

As a child I didn't have a voice. I had my intution, which told me something was very wrong, but I didn't have the right words, the strength, the power to continue speaking up and fighting for my body. You do not question doctors ... at least that's the general belief and unspoken rule. And as a child, you are dually gagged, as they are both an authority figure and experts, how dare one question them when you're simply a child? You don't. Instead of continuing to voice my struggles, pain and tremendous growing discomfort, I wanted to please everybody, not create any problems, ... so I stopped; ultimately, I shut up. As a result I literally witnessed the edge of a cliff, coming close to falling off. And, while I didn't fall off, .. while I'm alive and still walking, my life was forever changed in so many permanent and not so wonderful ways. As an adult I was not going to allow this same scenerio happen again. I was not going to give up or shut up, and I vowed to continue listening to my body and stating the problems, even while people were annoyed and questioned my sanity. Yes, a lonely and long road to travel indeed, but I did it, and as a result, I won a big victory for that little girl inside of me who had no voice. Perhaps my past experience was a set up and a needed lesson in order to navigate this more recent struggle ... I am not sure. Although, I must say, that had it not been for that little girl, the pain, the suffering, the battle I nearly lost, I am not so sure I would have been so persistent this time around. 



A few years back a nurse from my primary care's office said something that struck a cord with me, .. something that a patient may have very easily taken as an insult, but for myself it actually brought clarity and perspective to my life, more specifically the life I have been living these past 5 years or so, .. although, one could argue the concept fits me and my life going as far back as my preteens. What did she say to me you ask? She said that I was a "career patient," a term which I had never heard or considered before, but something which rang so true. It also followed along the same lines as another comment made by my mother a number of times over these last few very challenging and painful years. Let me back track and say that this time spent seeking help, answers, a diagnosis, and finally, treatment, has been very hard on me, both physically and emotionally. One could also easily say that it's been a battle financially and spiritually too, as it seems one only affects the other, just as our body's systems and conditions affect each other, like the game of dominos. 

For the majority of these years I have felt many emotions, spent many frustrating days enveloped in a nagging desperation that the so-called best years of my life, the time in our twenties which is supposed to be racked with happiness, new experiences, success, ultimately the building blocks (or years) of our lives, has been all but wasted being ill .. waiting to get answers, waiting to feel better, waiting for treatment and improvement, all so I can get back to living my life as normally as possible. Many weights were lifted from my shoulders, my heart, and my very being, the day I received my first auto immune diagnoses. Aside from the obvious, one additional weight lifted was the idea and belief that so many of my good years had been taken away from me, wasted, robbed, down the drain with no chance of recovery, and certainly no opportunity to press the rewind button. My mom's statement to me has been repeated over these last few years, but I was not able to accept it and truly appreciate it, .. really be okay with what has been occurring (and what hasn't) as a result of my chronic illnesses, until I allowed myself to see the whole picture, diagnoses in hand. My mom said that this experience, just like with life, has been a true education, one on a doctorate level, and that I had all but earned myself a Ph.D as a result of my ongoing struggles. This idea gave me relief, a sense of peace that I haven't felt in some time, a calm which allowed me to let go of the idea that this time spent being sick, unable to do so many of the things I longed and hoped for, dreamt of, and expected for my life, wasn't for nothing, and that it was a very large, expensive and multi-faceted education which will serve me well in the present and the future. I even hope that as things come full circle, that it may help in the healing of my past, which remains a painful and tender subject with too many layers to count. So, here I am; a career patient. A career patient with an extraordinary graduate degree in life with so much more to learn, but so many more lessons to share. And, one thing I know which brings me much comfort, I am not alone, even while I am unique, rarely fit in "the box," and always seem to fall upon the more unusual, more rare circumstances, conditions, diagnoses, and so on, within every department imaginable it seems. 

I am not sure why all of this trauma has happened to me, to my body, to my life .. and yes, while I don't want to throw a pity party and allow it to be my entire life and all of me, I do find it unfair, sad, and lonely. I have always tried to be an honest person, a real person, one with some integrity and compassion, sometimes too much so, and to a fault, and so, I prefer not to sugar coat things, to avoid apologizing for my life and my feelings. I am only human and I am not sure how else I can reach others if I am not just me. I am overly sensitive to things, overly sensitive to others, their feelings and heartbreak, and to how they react to me, so I can't say I don't care what others think and say, as that would be a lie, but, I am working on it ... working on letting go of other's judgments, opinions, beliefs and even criticisms about me and what I've experienced and endured in the life. Holding on to such things doesn't serve me in any positive manner and only generates negativity. This, I know, is yet another lesson for my doctorate degrees in life, and has been tested over and over by my journey with these chronic health conditions. As I have shared before, I believe we are our own best advocates, sometimes the only advocate for ourselves, and so trusting yourself, knowing your body and following your intuition, your gut, is so important, sick or not. 

About Me

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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.

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