But you don't LOOK sick ...
“Squeezing droplets of life between the crevasses of pain, illness & disabilities. But I don’t look sick ..."
PsA & AS: The Challenges of Sero-Negative Auto Immune Diseases
With a constellation of symptoms that rivals several chronic illnesses rolled into one, and blood work that frequently refuses to fit neatly into "the box," the auto immune conditions umbrellaed under "The Spondyloarthropathies," can be tricky to diagnose and equally as challenging to live with. There are many troublesome and less than lovely symptoms which accompany both conditions, but the pain associated with these auto immune diseases may be the most difficult to deal with on an everyday basis. And, just like the majority of equally mysterious auto immune diseases, it is not uncommon to find one's body under attack by one or more additional illnesses at the same time PsA and AS is invading the body. I have certainly found this to be true for myself, and it most definitely makes functioning and living with these conditions an enormous struggle. While I have had both illnesses reeking havoc in my body for at least 5 years, I was not officially diagnosed until the Spring of 2011. I am a pretty experienced patient with several other chronic conditions, but I have a lot to learn in relation to these diseases. My hope for this blog is to share my personal challenges and experiences with others who deal with Psoriatic Arthritis and Ankylosing Spondylitis, and hopefully gain new knowledge and support along the way.
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Friday, January 6, 2012
The Need for/and Lack of Compassion & Understanding with Chronic Illness
The Need and Lack of Compassion & Understanding with Chronic Illness ...
Anyone like to share about their struggles with getting family and friends to understand what they deal with in regard to chronic illness? I will start by sharing a piece of my story and subsequent feelings and experiences around this subject.
While I've had a few family members and friends who have been supportive, understanding and empathetic - in relation to my chronic illnesses since day one - I've experienced more negativity, and a general lack of understanding, from the majority of people in my life. I know that this issue is not an uncommon one when it comes to those who battle any chronic illness, and I am very interested to hear how others have dealt with this matter.
Some people offered genuine understanding, support and empathy, right from the onset of my symptoms, while others ... well, let's just say that I'm still waiting! And, to be very honest, I do understand that unless you've dealt with a similar issue yourself, it's really hard to relate to what another may feel in this respect. I've even had a few experiences where a person has come back to me after they too found themselves in a similar health related battle, and apologize for how they treated me. Admitting to the fact that they judged me based on stereotypes that many have when it comes to their ill counterparts. While I certainly don't wish any illness or medical problems upon anyone, it is nice to have some validation for what you've been dealing with, especially after being so harshly judged and/or criticized.
It never ceases to amaze me how people take things personally; believing that because I don't feel well, and therefore, I am not physically able to go out and do this or that, that it's an excuse and that it's about THEM ... Not about the simple fact that when you don't feel good, you don't want to go out. Sometimes you can barely muster the energy to get dressed! I know that's hard to wrap your head around when you're a generally healthy individual ... Heck, only a few years ago, I really couldn't grasp how a shower & getting dressed could be exhausting and leave one completely unable to continue on without a rest! In a world and a life full of healthy, young and energetic people, that concept couldn't be more foreign, right?!?
As a general rule, It's a hard to say "no" to people, especially when you're a polite "people pleaser" ... It's hard to have the same miserable answer for every question that entails how you're doing and feeling ... It's hard not to feel guilty ... It's hard to feel like you're screaming at the top of your lungs and not being heard ... It's hard to disappoint people on a regular basis ... And, it's hard to accept the fact that your body no longer does what you want it to, nor feels like you'd expect it to feel at thirty years of age! Learning to say "no," and not feel guilty about it, has been a really tough life lesson for me. But, as the years march on, I am becoming a pro at it .. or perhaps a really confident and experienced minor leaguer, lol. One thing that makes me so frustrated with all of this, is the insinuation that in some way, shape or form, one actually enjoys being and feeling sick the majority of the time!
Before I became ill with my auto immune diseases, I was only dealing with my spine condition, Spondylolisthesis, and it's various related issues. I had my surgeries when I was 15 years old, and afterwards, for about 8 years or so, I functioned pretty normally. I had little pain in comparison to before my surgeries, a considerable larger degree of energy compared to the present day, and of course, no additional crazy symptoms (ones that can stop you dead in your tracks, like chronic nausea, extreme fatigue and fevers). Even in this glorious state of physical being I once enjoyed, I still had to pace myself; being careful not to over do things so I didn't throw my back out, or become overly tired from the resulting pain. But, all in all, I was pretty darn healthy, and certainly very active considering the severity of my spine condition. I worked two part time jobs during high school and half way through college, and went to school full time. I also had enough energy, and general sense of well being, to conduct the rest of my life without blinking an eye or thinking twice. My apartment was always emaculate, even with three crazy kitty cats and a very messy boyfriend. I had an active social life, and spent a lot of time with my family as well. I even had the time and ability to throw in a few of my favorite hobbies, along with my intense workout schedule, which topped off at 3 hours a day, 5 to 6 days a week.
Yes, I felt pretty darn good during that time, and I couldn't conceive of how one might struggle to do the most basic things like bathing or folding laundry. But, even during this period of time, I found that I couldn't do it all, or at least as much as many others did. Many people worked full time and went to school full time; something I was unable to do myself. I was fortunate enough to have a supportive family who helped to pay for my college degree. Something that I know is not always a real possibility and option for others, and I am beyond thankful for that gift of a good education. During the last two years at UW, I decided to stop working (as I wasn't making much money anyways and I was able to do better in school if I was in less pain, therefore, more rest and less stress was required). While I was grateful for all I had - especially my ability to walk following my surgeries - I still struggled to some degree, and couldn't simply compete with others in many regards. I remember talking to this one girl after class and sharing pieces of my life. I revealed that I was not working, along with a comment about how I was doing in the given course we were taking together. Her reply was full of sarcasm and attitude, and really took me by surprise. She said, "Well, if I was as lucky as you are and didn't have to work because Mommy and Daddy paid for my school, then I'd be doing as well as you do too." This comment bothered me in a number of ways, but most specifically, it irritated me because if I could, I would have traded my less than stellar body for her healthy body in a heartbeat! I told her as such and she seemed to understand, at least I'd like to think she did. Still, that comment, and ones like it, have long tortured me. I would prefer to be healthy, pain free, energetic, etc., and therefore, able to work and go to school full time, verses not! For someone to say that they'd rather be in my shoes and experience chronic pain, depilating symptoms, fatigue, etc., than have a healthy body and be able to do all they want and need, simply makes me more angry and nauseous than I already am! Plus, it feels really invalidating in many respects as well. I can't imagine saying something like that to someone else, friend or stranger alike.
In the past few years, as my illnesses have progressed, those latter activities, like bathing and doing laundry, have become very big tasks, and forget going out and being social! Even if I feel decent (not flaring and experiencing massive inflammation in my face and joints, nor look like an accident victim as a result of my skin presentations), by the time I am done getting ready, I am exhausted! It sounds so very ridiculous to many of those who can't even fathom what it's like to live in a body that is battling multiple chronic illnesses and disabilities, but for myself and many others, it's a very sobering and painful reality. Somedays I break into tears; overwhelmed with these ongoing battles, in a war with my body ... a war in which I ponder the possibility of being victorious. My significant other will look at me and ask what's the matter. The question almost feels comical now. I can't even begin to put all of my pain, sadness, frustration, and even anger, into words. Plus, I am so beyond tired of answering that question ... trying to explain why I feel the way I do, and why I rarely get a break of feeling good. To put it simply; it is all beyond frustrating. At times, I want to scream: "I don't enjoy being sick and I don't want to be sick! I want to be normal, healthy, energetic, and I'm sorry I'm such a disappointment to everybody!" I guess sometimes it's good to scream and let it all out. The little girl inside of me wants to show everybody that I could be as talented and successful as everyone always anticipated I would be one day. She angrily wants everyone to know that she's just as disappointed in herself and the situation, and beats herself up enough for everybody ... and therefore, doesn't need the guilt, the judgement, the criticism, and lack of understanding.
Yes, contrary to this post, I really do try to be positive ... I swear I do! I guess I just needed to vent ... and let others know that they are not alone in feeling these emotions revolving around chronic health problems. I hear it a lot: Friends, family, and even medical professionals, lacking a general understanding and placing a lot of judgement onto those with a chronic illness. It seems so unfair to me, as most of those I've met who struggle with some kind of illness, well, they already feel terrible, and they want so badly to be like everybody else; to be active, energetic, feel good, focus their energy on life and not survival. I've also found that a large number of those with illness are or were overachievers and perfectionists, and that not being able to do it all, and do it all to perfection, is maddening and heartbreaking, among a few other adjectives!
I don't wish any chronic illness or disability upon anybody. It's not fun and it's not a way of getting out of doing this or that and being "lazy!" One thing that certainly makes living with any chronic illness a bit easier is having understanding, validation and less judgement, from those in one's life. I've mentioned the document called "The Spoon Theory" in the past, but considering the subject matter of this post, I wanted to make mention of it again for anyone who can relate to what I've just discussed. The concept of The Spoon Theory highlights, in simple and relatable terms, what it's like to have a chronic illness. It's both great for validation if you struggle with a chronic illness yourself, as well as better describing what it feels like to have a chronic illness to others who generally don't and can't understand. If you've never read the piece before, I would encourage you to take a peek now!
Posted by Cat
Labels: Ankylosing Spondylitis, Auto Immune Diseases, Chronic Illness, Chronic Pain, Compassion and Chronic Illness, Doctor Visits, Health Advocacy, Invisible Illness, Medical Intuition, Medical System, Psoriatic Arthritis, Sero Negative Spondyloarthroparthy, Sero-Negative Auto Immune Diseases, Sero-Negative Auto Immune Disorders
- 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 email@example.com. Please note that this address is also linked through my profiles. Blessings of health, energy and peace.