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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Wednesday, October 26, 2011
What Does It Feel Like to Have an Auto Immune Disease?
Having an auto immune disease feels like a gradual yet steady descent into a deep dark damp hole. It's similar to that of depression, but not the same paradigm. As you begin to fall there are a few people that notice and try to reach out and grab you, but you are not able to hold on for very long, soon finger tips lose touch and the hole tightens its grasp. From this hole you have a hazy window to see life; where you get glimpses of all the things you once held so important. You watch it all pass you by, and with time gaining speed, you make attempts to climb out, but you simply exhaust your body even more. Sorrow, anger, and plain frustration, are common place ... and, after a time, you don't want to "explain" how you feel anymore. You don't have the energy, the desire, the will to get others to understand. Heck, you are in a daily struggle for your life, you cannot waste your precious fleeting energy on words; words that so frequently go unheard anyway.
There are a few days - absolutely wonderful and overwhelming days - where you actually feel like a human again. Unsure of when to expect such a day, especially as the years roll by and your "bad days" outweigh your "good," you often awake with a better sense of your old self, like meeting someone that has been packed away and brought out for a special occasion. You seem to have little or no control over this person, or that of the obviously less desirable "sick person." All you know is that when this person, and this seemingly healthy body appears, you must take advantage of all it has to offer. I must say that this is a big pitfall in the world of a person living with an auto immune disease. Especially true for someone whom is dealing with a very active period (better known, and often referred to as a "flare"), with no sign of a remission in sight. I say this because someone living with a chronic illness - an illness which involves itself in nearly every facet of one's life - is truly walking a tight rope.
A "balancing act" is putting it mildly when looking at how to have a "normal," and semi active life, while struggling with such an illness. I cannot speak for other people living with the same or similar conditions, I can only speak for myself, but, I do believe that many would agree with me when I explain that "overdoing it" on a "good day" is a common occurrence. As a former perfectionist (former only because I could/can no longer physically deal with the pure energy perfectionism requires), a good day presents itself with so many "things" to do. So many things have been left undone, waiting for your attention, literally in every part/area of your life (from financial issues to personal relationships, and everything in-between), and when you have an opportunity to tackle the wide array of items that have been torturing you from afar, you try to get as much accomplished as possible before you drop from exhaustion. Unfortunately, because you are trying to put a few weeks of activity into a day or two, it is very easy to overdo it, which clearly creates imbalance, and is usually just too much for a less than stellar body.
Plain and simple, when your body has been hijacked by some ridiculous condition, you cannot, by any stretch of the imagination, function at the 'average person's' level. You simply cannot get even the most basic things done in an entire day that would easily be accomplished by a healthy energetic person in an hour or less. You are lucky (and happy), to be able to get out of bed, take care of your own hygiene, feed yourself (if you can stomach food or even have an appetite) and make a good attempt at contacting the "outside world."
To some, perhaps many, individuals like this appear lazy, and are very frequently labeled as such. While putting myself in these outsiders' shoes, I can completely relate to how one might view such a person, as no one truly "gets it" until it touches their own lives in an intimate manner. And, even when something of this nature is in your life everyday (say you are living with a loved one whom is experiencing the grasp of a chronic illness), you still don't really get to a level of complete understanding and true empathy.
I get it, it's hard to understand. It's difficult to grasp, and then deal with it on an everyday basis. Having compassion on a constant basis is a strain on the other party as well. Trust me, if you are that other person in the equation, we know that you want to scream, pull your hair out, and tell us to just get better, dammit! And trust me, there is nothing more in this world that anyone with a chronic condition wants than to just BE NORMAL AND HEALTHY. It's not fun, it's not comfortable, it's not what "life" should be, nor is it what we want.
After you are asked repeatedly how you are doing, how you are feeling, ... as well as things more sarcastic, like, so ... when are you going to feel better? - even while many questions are simply out of love, respect and concern - it becomes harder and harder to answer, or even speak to at all, as the answer feels like it will never change. And I do believe that many people become fearful that perhaps it won't. At least this has become a very real fear for myself. I think too, that because such an all encompassing health related condition can feel as if it has saturated your life (and often it does), it absorbs a lot of one's being and fills the many corners of the person's existence, even when it is actively resisted. This leaves the disease in control, and it very quickly and easily begins to feel like you are the disease ... that it is the only thing that defines you. This is a tough place to be, and again, you find yourself trying to partake in a balancing act.
As for this very moment, I need to take a deep breath and take a break. I am trying to teach myself better ways to cope. Not to overdo everything when I get that special day when the old me is a resident in this very alien body. I'll let you know the results. Thank goodness that the perfectionist is simply unable to function, as she would have lost it a long time ago!
Posted by Cat
Labels: Ankylosing Spondylitis, Auto Immune Disease, Auto Immune Diseases, Chronic Illness, Chronic Pain, Compassion and Chronic Illness, Doctor Visits, Health Advocacy, Invisible Illness, Medical Intuition, Medical System, Misdiagnosis, Psoriatic Arthritis, Rheumatology, 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 firstname.lastname@example.org. Please note that this address is also linked through my profiles. Blessings of health, energy and peace.