Is My Invisible Illness Visible?

I almost can’t help but find some twisted amusement, as my invisible illness (the namesake of this blog), seems almost visible these days.

There is no doubt that I have not been myself lately.  As I mentioned in a previous post, I am desperately struggling to function through heightened anxiety, depression, panic attacks, and all around emotional instability.

I seem to have lost all ability to control my emotions, and even worse, my reactions and the words which spew uncontrollably out of my mouth, unfiltered, and without prior thought or regard for my surroundings and others in my presence.  My stress level seems to have taken a toll and my body and mind are doing as they please, despite my constant resistance.

Not only are these changes in my personality visible (and often embarrassingly audible ~ LOL) to those around me, but my appearance has undeniably been going downhill.

Once again, eating has started to cause significant pain and the stability in my weight, which finally seemed to be under control after my pancreatic bile duct blockage and Sphincter of Oddi Dysfunction was corrected during the ERCP, sphincterotomy, and stent placement/removal, that took place last December, has now returned to its previous unstable state.

My gastroenterologist told me that I may not immediately gain back all of the weight that I lost over the past 2 years, as we both recognize that I have other sources of chronic pain, which limit my ability to comfortably eat, so those are also contributing factors.  However, he also knows that I am committed to eating healthy and nutritious foods (when I can) and assured me that stopping the continuous weight loss (and of course treating my dysfunctional pancreas and biliary system) was the most important goal and should be the result of a successful procedure, as my body would regain access to the bile and other substances necessary to digest food and absorb nutrients.

Well, I’m sorry to report that not only have my upper GI symptoms returned but my weight plateau has disappeared and I rapidly lost the 5 pounds that I managed to regain since December, plus I lost 2 more pounds, which left me at 86 pounds the last time I had access to a scale (about 2 weeks ago).  That is less than I weighed at the time of my procedures in December!!!  I would be willing to bet that I weigh less than 85 pounds right now (which is the lowest weight of my adult life – as far as I can remember).  The worst part is that it isn’t stopping or improving.  I don’t have a scale at home, although I need to get one, but I can feel the difference and see the difference and unfortunately, so can everyone else, especially as my clothes no longer fit and almost fall off of my skinny, malnourished body.

I don’t know exactly what this means, but I can only assume that my pancreatic duct is already blocked again (which was not supposed to happen). I can’t go back to the doctor quite yet, for a variety of reasons, but I realize that I will have to, as soon as possible, unless things miraculously get better on their own. As soon as possible is over a month away, at best, so wish me luck until then.

The only somewhat positive thing I can find in this scenario, is that my chronic illness, which has almost always been invisible, is now a little more obvious to those who are paying attention. For once in my life, I look more similar to how I feel … SICK, IN PAIN, UNWELL, TIRED, AND ILL!!!

Healthy people may be unable to fathom how hearing someone tell you that “you look awful” or “you look like shit” could possibly be considered a positive thing. I’m not crazy enough to think those are compliments (although some are said out of concern). What those words mean to me is something very important to anyone with a chronic invisible illness – VALIDATION. I hear that they BELIEVE me. YES I DO look sick because I AM sick and I have been for all these years.

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13 Comments

  1. Being in pain, because it is invisible, is something that others become desensitized to but which the sufferer does not. I deal with chronic abdominal pain. I can’t do much as I used to do but people seem only remember the “well” me and expect me to be able to do those old things.

    I endeavor to not constantly complain. I think that what that means to some is that ‘can’t see it, mustn’t be there’. Don’t i wish. I take pain medication daily but don’t show that publically either. If I had a body part missing or an open wound people would acknowledge it.

    The same goes with being bipolar. Can’t see it, mustn’t be there.

    Liked by 1 person

    • Exactly! I couldn’t agree more. All of my conditions are primarily invisible and almost no one understands, except for my online support group members and fellow bloggers who also live with chronic and/or invisible illnesses, pain, etc. The dynamic of interacting with some people who remember the prior, more well, and somewhat healthy (or healthier) me can be very complicated. Especially with some of my co-workers who I only see for a few minutes each day. They don’t all know or understand why my personality has changed so dramatically and many of them have stopped interacting with me at all, even on things that are required to do my job. They just go to other people within our office instead for assistance with duties for which I am responsible. I think they are confused and maybe think I don’t like them anymore or am just not very nice now for some reason, when I used to always smile, laugh, and joke around with them, which is a stark contrast to the more quiet, reserved, me who sits in my office with my heating pad, desperately trying to work while distracted by pain. They rarely see a smile on my face, but I do my best to hide the severity of the pain that I’m feeling on the inside (both in my body and in my heart and mind). Some of our newer employees likely just think I’m a stuck-up bitch since they never knew me before this all started. Those who haven’t unfriended me on Facebook probably know way more about my health than they would like to, as I’m not shy about sharing information, spreading awareness for lesser know conditions, etc. on my timeline. I know that most people would rather not see it and probably don’t care but I hope that by doing so I can help others who might be going through similar challenges and shed some light on the reality of what I’m going through to others so that maybe they can at least try to better understand and perhaps try to show more empathy and compassion rather than mostly avoidance, disrespect, or resentment for how my health issues and the subsequent consequences of living with and treating them may negatively affect them in some way. It can be heartbreaking for sure. I should be used to it by now and I’m starting to adapt, but there are times when it still hurts.

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      • I had quit work some time ago.i wasn’t nothing more than to return to the workplace. To that end, i returned to college and r
        earned my BSBA with a human resources minor. While in school there were days that i want able to stay in class and i was amazed at how childish some students were. The age cross section was 18 to 60 and all acted stupid. I am going to one more doctor to see if there might be something to be done about reducing my pain level. If there isn’t, i will return to work and adapt.

        I know i served off of the pavement there, sorry. I hope that you find relief. You are not alone!

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        • Congrats on your success with continuing education while struggling with chronic pain! That is definitely an achievement! Working with chronic illness is one of the hardest things I have ever done, but I am lucky in many ways, one of which is the fact that I have been doing my job for over a decade so I could practically do it in my sleep. I believe that having a firm grasp on the duties of my position, prior to my chronic pain progressing and invisible illnesses multiplying to my current state, has been one of the key factors that have allowed me to keep working. I can’t imagine having to learn and retain new information or skills while being distracted by intractable pain. Good luck with your next doctor, possible future job search and career, and whatever happens in between. Happy Independence Day! 🌼

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    • Thank you for your kind words. I certainly feel anything but strong most of the time, but I try extremely hard to be and to keep on living the best possible life, under the circumstances. As you know, it is a constantly evolving journey as we learn to adapt to a life filled with chronic pain. I stay as strong as I can for my husband and my parents. I have also developed a desire to advocate for the recognition of and more research for certain conditions, chronic pain in general, and better treatment for chronic pain. You do a fantastic job of addressing the problems surrounding pain management and the tragic consequences of the “war on drugs.” Thank you for having the courage to speak out and make a difference. 🌼💜🌼

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  2. I am hoping that you find some relief soon. I definitely can relate to validation and that there is some relief that when you look like crap matches how awful you are feeling on the inside! Thank you for sharing your struggles and giving us strength.You inspire me. I am sending prayers and a gentle hug.

    Liked by 1 person

  3. Pingback: Is My Invisible Illness Visible? | Dangerously Normal

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