A possible reason is because I have shared many of the symptoms over and over and over again with my medical team. How many ways can you say that your nauseated or fatigued? No matter how hard I try, it would be impossible to convince anyone that's not experiencing it the true impact that the severity of my symptoms have on my day to day functioning and quality of life. Most people feel miserable with being nauseated for a couple of hours or a day, I know I was prior to becoming ill. But now, it's a constant daily struggle and has been for 3 1/2 YEARS! My "good" day with nausea is likely comparable to a bad nauseous spell that I had 4+ years ago. I hear and see people complain about the stomach bug that's going around, how they were up all night nauseous, how they can't take anymore of the abdominal pain that began that morning, how weak they feel from not being able to eat for one entire day, etc. And I sympathize and empathize with them because I know the feeling, only mine is persistent and has lasted for years, not a day or two. It doesn't get better, it hasn't gotten better. It seems as though, with the exception of removing the pain due to my gallbladder and colon (which I have NO REGRETS about), that my issues especially regarding my strength, energy, nausea, and abdominal pain with oral intake only continue to get worse.
Maybe part of the problem is that I don't believe that I could completely make them understand anyway, so what's the point? Sometimes, I just get tired of repeating myself. I've explained or shared so many of the same symptoms so many times over the years that I'm kind of immune to the words I guess. The severity level on the spectrum may fluctuate, but even when my "normal" symptoms are at the highest levels, I feel as if I am complaining over something petty or insignificant. I have, and I'm pretty sure so many others that deal with chronic digestive illnesses like me have as well, seen the expressions and heard the comments minimizing how destructive our symptoms are from our colleagues, friends, family, and even at times medical providers.
"Everyone has tummy aches sometimes."
"Yeah, I remember when I ate too much at the buffet the other night and I felt bloated and nauseous. I just took a Pepcid and in a couple of hours it settled down. Maybe you should try that?"
"If you'd just stop thinking about it and return to the real world, you'd feel better and forget about your stomach hurting or being nauseated."
"I'm tired too, but I keep going. I don't let it stop me. I just grab a coffee and I'll go to bed earlier tonight to make up for it."
What they don't realize is that though their statements may be true in the lives of some people, that's not the case for me or many of the people I've met from online support groups. If you don't live this life, it's hard to fathom it, and statements like the one's above (even if said with good intentions) sound critical to my ears and can make me feel like I'm being ridiculed. So why does that matter? One may suggest to ignore the comments or forget what someone else said, right? Well, it's not that simple. Because when I start to say something about the nausea, bloating, pain, or fatigue - in the back of my mind I can't help but think about how the words are going to be perceived. I begin doubting myself. doubting being understood, and therefore doubting the possibility of any relief being found.
There are times that I'm around people who are sincerely interested in hearing exactly how I'm feeling, want to know all the details, and need to hear them so they can best assist me. Usually, this group consists of my closest family members, doctors, and nurses.
Whereas my family may desire to know the whole truth, it's just not feasible or necessary all of the time. Sometimes I have to keep some things hidden from them as it's for their own good. They can't worry about me all the time! I have to make sure that they hold on to faith that I'm okay, or going to be okay. Because ultimately I want to be okay. I also don't need them trying to persuade me to reach out for help over every little thing. I know that they love me, but sometimes I have to deal with things on my own. I have to learn to live with feeling bad and then let them know when symptoms begin to intensify or spiral out of control.
My medical team on the other hand, especially my GI, home nurse, and therapist, need to be aware of anything and everything when they ask questions. I need to be completely open with them about how I'm feeling, what's not working, my health concerns, and even sometimes my health fears. And though I want to, it's just not always possible. Maybe it's because I want to be better instead of expressing discouragement. I have to remain "strong" in the eyes of others (and self), which means that no matter how horrible I feel, I must remain in control of my emotions. If I end up crying or become upset when sharing my health complaints with my medical providers, I increase my risk of not being taken seriously. Instead of focusing on the actual problems, my doctor's attention may divert to anxiety and depression treatment, even if my tears are just an expression of my frustration from wanting desperately to feel better. That risk is not worth taking, so I sometimes have to distance myself and my words from my emotions. For this to happen, I believe that I become quiet, vague, and indifferent to the symptoms that I'm describing. I need to ensure that I'm hopeful (even if I'm losing hope), pleasant, and calm as I don't need to chance becoming incorrectly labeled, dismissed, or overlooked. Is this reasonable and wise? On the mind standpoint yes, though on the medical side I'm sure that it can be counterproductive as it may make diagnosis and treatment more difficult when the degree of my symptoms are not clearly understood or recognized.
Furthermore, my resistance to sharing the most accurate image of how my health is going may reside in the fact that I ultimately do want to be better. I want to eat, I want to participate in activities, I want to be healthier, and I want to live instead of just existing. However, I'm not sure how achievable that is now. Being completely open and honest makes me vulnerable. Do I really want to have my fears of illness confirmed? Do I need to take the chance of being told that I have to just deal since there's no other viable treatment options? I am aware of the importance of being straightforward about my health, but avoidance just seems easier and kinder than facing reality. I'm not sure how much more negativity I can take, not sure how many more trial and error treatments I want to pursue, and to be quite frank, I'm uncertain how much more I can handle with this illness.
If there's nothing else that can be done, if I am running out of opportunities for better health, then should I even continue trying? Am I truly worthy to receive effective help or assistance anyway? I mean, I am just 1 person in this world full of millions and millions of other people that desire better health and healing as well. The majority of which are much more prominent and beneficial to society than I am.
I don't know, maybe I am just being stubborn with all these attempts to improve when I should just deal with it and accept that sickness is the path that I am intended to travel. Instead of grumbling about how rotten I feel, I need to adjust my thinking. Instead of thinking about how sick, fatigued, or weak I feel daily, I need to focus on being content with all the positive things that are going on around me.
But once again, these words and ideas or much easier said than done!