Why is complete honesty about my health, especially to my medical team, easier said than done?
I tell myself before each appointment, call, or email that I'm going to be completely honest and transparent, yet I continue to have difficulty relaying a true & accurate message when new health issues arise and/or current ones continue. Without meaning to, I often downplay severity of symptoms and situations by either softening the situation behind a smile, lacking descriptive details, or attempting to be positive and optimistic about what I am experiencing. I honestly try to be genuine and transparent during my appointments but often find it difficult to express my thoughts and symptoms to the full degree that I'm experiencing them. Why is that, one may ask?
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!
Cruising along in life with beauty all around. A few minor storms rocking the boat, yet followed by calm waters and rainbows. Comfortable, relaxed, and under the impression that all in life is surmountable. That there is nothing that is unattainable if you give your absolute best and bask in the joys of life.
But then unexpectedly mayhem arrives. A horrifying atrocious storm that leads you into a path of destruction. Turbulent ferocious waves slamming this way and that.
Finally, a moment of tranquility. Hope slowly building, trying to salvage what survived, feeling like control has been regained when WHAM!
Capsized! Confusion sets in! Caught completely off guard! Where in the world did that come from? Was there any way that I could have outmaneuvered or avoided this destructive, disastrous squall before irrevocable damage was accrued.
How can I prevail and ensure that my purpose is achieved - when flooding waters are engulfing me, overwhelming me, making me feel as if passively decaying from my earthly vessel? Left considering if vanishing to my creator would be easier for my family and me. Would they not discover closure and rebound after sorrow to find life more enjoyable when not surrounded by my sick, stagnant, and dormant body?
The waves continue colliding and demolishing my body's spirit and health. Ambushing me, drowning me, submerging me under raging waters. Will the storms and tortuous waves ever subside? Will I, the captain of my vessel, ever be able to survive the wreckage I'm immersed with? Or will I disappear completely, a castaway left at sea, an outcast of society?
Slammed again and again. Tossed around, seasick, dizzy, and unsteady on my feet. Is it because I'm not worthy? Do I not deserve assistance? Is recovery even possible any more or is it just an illusion? An illusion that I believed to see because my hope was so immense, but not really there. Or maybe it's just too far away that the rescue from illness may be possible, to someone else, yet is too far away to be of any benefit or assistance to me and my fate.
Regardless of the constant rocking from the continued waves, my weary eyes and feeble body envision my entire world. I identify the unconditional love that awaits me and awaken with an appreciation for life with my family. I'm reminded that God has a purpose that I have apparently not fulfilled yet. I vividly escape into dreams of witnessing and experiencing life's upcoming adventures with my children. I embrace my desires to hold my kids' hands and comfort them when life is hard while also looking forward to celebrating their personal accomplishments and dreams they undoubtedly will achieve.
Admittedly, life is bleak and treacherous at times, but somehow we can't give up! We must continue to grasp ahold when our life seems to be falling to shambles, regardless of how vast the storm. We must keep our minds focused on the future and ones we love. We must maintain faith that God will keep us grounded. If we allow Him to, he will rescue us from despair by surrounding us with blessings, love, and support. We just can't let go!
I have to remind myself that I can NEVER EVER GIVE UP! Eventually, the storms and raging waters will subside and when they do, it will be magnificent!
August of this year is now behind us, which has been known, unofficially, in the Gastroparesis community as Gastroparesis month. This year, no cure was found and we as a community are still struggling with finding effective treatments, but not all was lost. The Gastroparesis community actually has some reasons to celebrate!
- AUGUST IS NOW OFFICIALLY ON THE NATIONAL HEALTH CALENDAR NOW!!!! Yahoo! This is outstanding news as now more people will become aware of what Gastroparesis is and hopefully it will help with the push for more research. We no longer have to request state proclamations to verify that our disease needs awareness or verify our cause. Much appreciation to IFFGD (International Foundation for Functional GI Disorders) for assisting in making this possible.
- Prior to be on the National Calendar our Gastroparesis: Fighting for Change group had various members across the nation volunteer to request individual state proclamations. Yes, we were successful this year. We received state proclamations in approximately 1/2 of the US - some were for GP Awareness Weeks, others for GP Awareness Month. How exciting is that! Yes, my home state was one that was granted.
- Miracles From Heaven - the movie - became available on DVD! What a great movie about Functional GI Motility Disorders, family, and faith. If you have not seen it yet, I would HIGHLY SUGGEST it! It is basically about a young girl that unexpectedly becomes very sick with Pseudo-obstruction (Her intestines were not functioning properly) and Gastroparesis (though it's not actually named in the movie, just briefly mentioned, the book and interviews have said that this was also a part of her health problem. (Gastroparesis is when the stomach is essentially partially or completely paralyzed and doesn't empty properly.) The movie doesn't fully describe the length of time that her illness lasted, but does a nice job relaying the pain and frustration we go through to receive proper medical care and the importance of support from family, friends, and faith. I can't honestly speak for everyone about how similar or accurate the symptoms are portrayed, as there is a vast spectrum of severity. I can say that I could relate very well to parts of this movie, but most importantly, to the pubic eye, especially the one's that don't live with GP or FGIMDs, it is eye-opening and an opportunity to build the discussion.
- In the online GP community that I'm a member of, we have had many members have success at getting some awareness out locally in their own cities and states. Some have had movie days (watched Miracles from Heaven with family/friends or even church groups, some individuals have spoken and/or participated in medical conferences, others have created and shared awareness videos, some have been interviewed by local news (print, TV, and/or radio) to share their story and GP related facts, others have held meet-in-greets with other GPers that live near them. Additionally some members of our GP community have written and shared information in blogs, posted awareness meme's and facts on FB for their non-GP friends and family to read, and participated in events such as the #TAKEABITE4GP campaign and/or #Green4GP on various social media platforms. (TakeABite4GP is a campaign that a couple of our members began. The idea is to have people post pictures of themselves taking a bite for those of us that can't, to support of the GP community.) I must admit, is was great seeing so many non-GPers from all around the world share support for the GP community by sharing articles, pictures, comments, and more. A couple of GP friends and I were even nominated for the WEGO Health Activist Awards in one or more categories each. Even if none of us actually "win" being nominated is a "win" in and of itself as it helps us gain more awareness for Gastroparesis.
- On the Twitter front, it's nice to see more and more medical institutions, medical providers, even research centers sharing more information about the need for Gastroparesis awareness, research, and more effective treatment options.
- The Gastroparesis and Functional GI Motility Disorder communities are still trying to persuade Congress to approve #HR2311. This bill would help increase awareness, funding, and research for these illnesses, eventually leading to more health care provider being familiar with our illnesses, better treatment options, and possible one day a cure. We have had a few more Congressional Members co-sponsor the bill but we need more. Please help join us by emailing, calling, writing a letter, visiting, or even just signing our petition for support at https://buildquorum.com/actions/1996
This list in not all-inclusive There are various other facts and experiences that I chose not to share today. The statements below are based on what I have encountered during my personal health journey. Other patients may have stories that are similar, less dramatic, more severe, or completely different than mine.
Why is initiating contact with my medical team difficult? I trust them, have good rapport with them (I think), and am able to talk and answer questions with them honestly. So why is it hard to reach out to them when health issues arise or worsen?
To some, including my family, my thoughts, my considerations, my fears, and my concerns may seem petty, silly, or ridiculous. But to me - they are reality. I have an amazing medical team that I trust. I feel confident and comfortable with the care that they provide. I honestly believe that they are on my side, wanting to help in any way they can to improve my symptoms and quality of life. I do believe that they are willing to go above and beyond to meet my health needs when needed, as they have proven this too me on numerous occasions, that they will try to protect me from unnecessary treatments/procedures, and even give their best effort to help me avoid the ER if at all possible.
I can't even describe how encouraging and refreshing it is to have this sense of being in the care of a wonderful medical team. I am determined not to do anything to jeopardize it - as I've witnessed having doctors that don't care, one's that don't take the time to consider or treat their patients as a person, and have heard horror stories from people that have been "kicked aside" by their doctors and left with no one to turn to or depend on. I can't let that happen to me.
I have to protect what's actually going right in my health journey! This journey is difficult and challenging enough as it is. But having a medical team that I have confidence, faith, and trust in helps make the journey a little less frightening.
My key questions that keep revolving and challenging me are ...
How am I suppose to know when my health issues are dire enough to let someone outside of the family know? When is it necessary and important for me to initiate contact with my doctors and/or home health nurse?
Do you have difficulty contacting your medical team regarding your health needs and concerns? What are your reasons and experiences? Have you set a personal guideline to help you determine when to reach out and contact your medical providers?
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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