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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Wednesday, June 8, 2011

Finally! Answers to my chronic illness ...

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. 

2 comments:

  1. If you are having any trouble posting a comment, please message me on my profile or through my page at Aidpage (see links on right hand side). Thanks!

    ReplyDelete
  2. You are one heck of a gifted writer and should publish these - I identify with everything you have been through, we could discuss for months. I was so beaten down by doctors that I rarely see them these days and treat myself through intuition, meditation, nutrition and exercise.

    ReplyDelete

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

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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