Misunderstood

There are many moments these days when I feel very misunderstood.  I have always been a little quirky and not exactly a social butterfly, who excels in human interaction.  Perhaps that is why I chose to stick with governmental accounting for my career.  There are no interpretations necessary when it comes to data. Things are almost always black and white.  Dealing with the social aspects of working with people however, is another issue entirely.

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What I truly wish people could understand is the FACT that I have a chronic invisible illness.  Actually, I have more than one.  One of them is Endometriosis and I was born with it.  Tissue was most likely displaced when I was a fetus and until I can afford proper treatment, which is out of reach for the majority of women with Endo, I will continue to suffer with debilitating symptoms.  Even if I am able to obtain the expert excision surgery that I ultimately desire, there is no guarantee that I will be free of pelvic pain afterwards, because there is NO CURE for Endometriosis.  I did not choose to have this disease.

Those who have known me my entire life will know that I have struggled with symptoms of this condition since my teenage years.  However, this was not something that everyone knew about (I didn’t talk about it) or something that I even understood for a very long time because I was not diagnosed until the age of 31.

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I was able to live a somewhat normal appearing life for several years, partially due to the unhealthy habits of my younger years, including self-medication, along with the fact that my symptoms were more intermittent until my doctor mistakenly prescribed over twice the recommended amount of fertility medication for women WITHOUT Endometriosis; some prior to having diagnosed me with the disease and still more even afterwards. After that, and my first and second surgeries, my pain and symptoms started to spiral out of control and my Endo became more of a constant presence in my life.

What I did not know at the time of my prior abdominal surgeries was that ablation is not the gold standard treatment for Endometriosis and has a very high failure rate.  Unlike excision (which cuts out the diseased areas at the “root”), ablation simply burns the surface and not only leaves remaining disease behind, but it also causes further damage to the peritoneal tissue and significant surgical adhesions / scar tissue that become more dense and painful over time, as they restrict the normal movement of internal organs.

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During the past few years, I developed yet another chronic painful condition that still remains somewhat of a mystery.  Not long after that happened, my husband unfortunately joined my life of chronic pain due to a failed anterior cervical fusion surgery following an auto accident.

I did not choose my second condition (chronic facial pain) and my husband did not choose the living Hell in which he now exists.

I realize that some people may not understand our chronic and invisible illnesses and may even feel skeptical and/or inconvenienced by them.  I’m sure it must be annoying when we have to cancel plans, can’t go out and do the fun things that we used to enjoy, don’t talk, smile, and laugh as much as we used to and when I have to call in sick to work due to severe pain flare-ups.

I am sorry to anyone who is negatively affected by the unpleasant life changes that our conditions have created.

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I have always been a hard worker and a bit of a perfectionist when it comes to my career and job duties.  I have always worked very hard and I still do. In fact, I now must work twice as hard to achieve the same results.  That can be very difficult when I am constantly struggling with severe pain and fatigue but I continue to do it because it has to be done.  I also continue to make provisions and come up with ideas to lessen the burden of my sporadic absences by utilizing VPN and other web-based apps that allow me to complete a good portion of my job from home.

I know that no one can fully understand what it feels like to live like this, just as I cannot fully understand what it is like to walk in someone else’s shoes.  I wouldn’t even begin to expect that from anyone.  What I CAN and DO expect is that those in my life, whether it be family and close friends, co-workers, Facebook friends, Twitter followers, or mere acquaintances is to show COMPASSION and BELIEVE in me and my husband.

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I realize that it may be difficult to comprehend how I can walk two miles one day and be bedridden the next, but it happens so please don’t question the legitimacy of it.  Who in their right mind would make that choice?  Contrary to popular belief, it isn’t very much fun.  In fact, it is a living Hell.

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These physical ailments are the hand that we have been dealt.  If either of us seem depressed or withdrawn, it is because we ARE.  That becomes an almost inevitable side effect of chronic illness and pain.  Imagine waking up one day with the worst toothache imaginable and despite going to dentist after dentist, doctor after doctor, and specialist after specialist, it NEVER goes away!!!  How would you feel?  I can promise you, with 100% certainty, that your life would completely change.  The emotional and psychological changes that take place with chronic pain are the RESULT of but the CAUSE of the illness.

No amount of psychological or psychiatric help is going to cure an incurable disease.  If I “don’t look sick” please remember that I try very hard to smile through the pain when I can and that my doctor and I have worked hard for years, trying endless combinations of medications, procedures, and various treatments to find one that masks my symptoms enough for me to remain semi-functional, most of the time.

tumblr_llsed49edo1qhcq72o1_500Let me assure you that no aspect of our chronic pain is being fabricated or exaggerated, it is NOT “in our heads”, we are NOT drug addicts, I’m NOT a hypochrondriac (even if I used to make jokes about being one), psychiatric treatment isn’t going to cure us, getting out more or getting more exercise isn’t going to make our conditions disappear (even though I realize that it is healthy and thus the reason that I’ve started walking on a regular basis), and I do NOT enjoy having to utilize nor do I abuse the intermittent FMLA that allows my work absences related to my chronic illnesses to remain legally protected.  When asked if I’m “better yet”, I am sorry to say that the answer will most likely always be “no” because my conditions are chronic and they have no cure.  I have good days and bad days but the reality remains that no permanent solution to what ails me has been discovered yet.  My husband’s future is a little less certain and we do still hope that a very good surgeon might be able to improve his condition, but only time will tell if our hopes become reality.

If someone doesn’t understand something about our situation, they should feel free to ASK or follow me on Facebook, Twitter, or my blog (and actually READ what I write and the articles that I post) rather than jump to conclusions or form their own ignorant speculations about things that they probably know very little about or know just enough about to come to inaccurate conclusions.

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Everyone seems to know someone who had a similar condition, who went on to have a certain surgery, took this new miracle drug, used the power of positive thinking or prayer, and were suddenly cured and are now better than new.  That is great for them but it doesn’t mean that the same thing is going to work out for my husband or myself.  Believe me, I truly wish that it did.  If it’s out there, we have likely tried it.  We have doctors following our cases and treating us in the best way that they can at this time.

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I share plenty of truthful information about our situation on social media, for the purpose of keeping those in our lives informed, for education and advocacy, and just to get it off of my chest once in a while.  I do not do any of this to seek attention.  I share for the reasons I just mentioned and as a coping mechanism, to help me deal with the major changes that have taken place in our lives over the past few years and the changes that continue to take place each and every day.  I use it as an outlet so that I can clear my head and keep moving forward and focus on the things that really matter like work, taking care of day to day responsibilities, paying medical bills, planning the next step in ourmedical treatment, etc.

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I am more than a little sensitive when it comes to being misunderstood, even though you would think that I’d be used to it by now.  Even when someone doesn’t come right out and say it to my face, I can see that all too familiar look of doubt in their eyes, hear the whispers behind my back, or understand the true meaning in the undertone of their speech, even when they are sugar-coating it with less direct words and it HURTS.

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We have enough pain in our lives without worrying about being believed, being discriminated against, or being judged.  Trust me, medical professionals in the USA will do plenty of that on their own, which leaves very little emotional room for enduring such treatment from others.

Please just accept us as we are, be patient, and treat us with the compassion and empathy that you would hope for if your whole world had been turned upside down.

It’s really very simple, as with most things in life.

so whatever you wish that others would do to you, do also to them  

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2 Comments

  1. Yes, it certainly is hard not to feel depressed when you are in pain all of the time. I would love and prefer to be on NO medication at all, but unfortunately I finally realized that I have no choice if I am to remain able to work, function, and carry out the necessary day to day activities. I stopped taking my antidepressant and anti-anxiety meds once for several months but that experiment was a massive failure, as my panic attacks returned with a vengeance. My pain specialist is very strict so I have to agree to take exactly what she prescribes and follow the instructions exactly on how much I take and when I take it. No more and no less. That is OK with me for now because before I started treatment with her, I was on a month long medical leave of absence from work. Now I am able to work full-time, take care of the grocery shopping and other errands (since hubby can no longer ride in a car) and even exercise a little bit. Hopefully some day a treatment or procedure will become available that will provide better, long lasting relief so I don’t have to rely on and worry about the long term side effects of various medications and deal with the financial burden of the very expensive routine doctor appointments and prescriptions.

    Like

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