Of value...

I tried to talk with my friend Mary about a thought I had today and could not find the words to match what was on my mind.  I did think of something I failed to express that might help.

Today, I finished a three-day gastroparesis patient research study.  The honorarium is $125, which was my primary focus for doing the study.  I have not qualified for all but one other of the dozens of preliminary surveys I've filled out this year.  So, I was surprised when I was chosen for this one.  However, I was more surprised by the other benefit I received from my participation.

I am a part of a support groups on Facebook for: dysautonomia (general); neurocardiogenic syncope (NCS—my type of dysautonomia); Sjögren's Syndrome; and Pudendial Neuralgia.  The latter two I mostly just "listen" whilst checking in, but I do interact in the first two, primarily the one for NCS.  In the two dysautonomia groups, there are many, many folk who have gastroparesis, but the talk is rarely about that.  For three days, I was privy to interactions with others who spoke almost solely about its struggle.  And I was blessed.

There are so many symptoms I manage that there is no time for so many of them.  The therapist finished my words when I tried to speak this, noting that not having time to address the PTSD was harmful to me and made everything else difficult.

Life with gastroparesis is terribly difficult.  It is draining and discouraging and can be an incredible detriment to your health.  During the study, I was reminded of this in a way that was helpful.  I do not always remember that one of the problems with having a slow stomach is that medications are not digested properly.  When your lunch is lagging behind, so are your meds.  One participant talked about how her doctor has her on as much liquid medication as possible.  Lately, I have been so very focused on how my battle with dysphagia is affecting my medications (my pills are dissolving in my throat because they get stuck and it HURTS) that I have forgotten that I need to be vigilant when my stomach is not working well.

There are several more examples like that, but suffice it to say the interactions were quite helpful in that I was able to spend most of my thinking for a spate of time focused on one condition and all the ways it was affecting my body.  The latter is important because I often think of (and blame) dysautonomia when it comes to constipation.  [I have only recently been able to admit that I have constipation because it is a side effect more than a condition and, therefore, something I prefer to ignore as I find it embarrassing and view it as a personal failing of mine.] However, gastroparesis causes constipation.  So, really, I have a terrible confluence of two things hindering my bowels.  SIGH.

The other part of the blessing I received from the study was that, for a while, my suffering had value. My experience and my thoughts about it mattered greatly.  And, it struck me, hours after I finished, that it bothers me that my suffering from sexual abuse has no value.  My dear friend, who is an incredible wordsmith, was having trouble with my use of value.  I couldn't really get around that in trying to express what I meant.

Tonight, I just thought of another way to describe it.

For three days, my suffering from gastroparesis had value.  My experience mattered.  My thoughts about my experience and my treatment and my opinions about resources needful for gastroparesis patients mattered.  My words were important, even though they were about difficult subjects.   My suffering mattered because in speaking about it I was given the opportunity to inform and teach research and marketing folk and, in doing so, help others in their suffering.  My suffering mattered because it was acknowledged as an experience that could be helpful to others in their suffering.

The crappiest thing about gastroparesis is that there are primarily just two drugs that you can take.  The third, E.E.S. is no longer available because its manufacturer stopped making it.  Only, that is what I thought.  What it used to be.  I have discovered that it is being made again.  But back to the two made motility drugs.  One is only to be used short term because it can cause tardive dyskinesia (the shaking you see in Parkinson's), and when the tardive dyskinesia starts, it is permanent.  Stopping the medication will not resolve it.  The other has serious cardiovascular risks.  In other words, it is a serious risk to take either drug.  Erythromycin, the third drug, can cause diarrhea, though I never had that problem whilst taking it.  Its downside, other than folk can be allergic to the antibiotic, is that it usually looses its effectiveness.

There really is no great, effective treatment for gastroparesis.  Several folk in the study talked about how they were told to simply eat smaller meals.  Eating patterns and diet does make a difference, but not always ... especially when a malfunction of your autonomic nervous system is the main culprit.

However, there exists little resources for the newly diagnosed on treatment options, OTC products that help with symptoms, nutrition, and emotional impact of both life with chronic illness and living with gastroparesis in particular.  A goal of the study was to garner information that might help in that area.

I have described one of my main problems with having visitors as the KUWTJ syndrome: Keeping Up with the Jones, or KUJ for short.  It is a real problem of mine.  Visitors come, I eat with them instead of following the eating schedule that is best for me.  I feel great pressure to join in, to eat "normally," and so I do.  I do no matter the consequence to me.  I do and I hide those consequences.  I do and I spend weeks recovering, trying to find that balance with my innards again.

Several of the participants talked about how very isolating gastroparesis is.  Eating together is a large part of building familial, personal, workplace, and community relationships.  When what you eat and how you eat separates you from others, it is difficult to build those relationships.  I saw it happening at work when reactive hypoglycemia became a problem.  And it became worse when I started struggling with nausea, pain, swelling, and the rest.  For a while, I lost quite a bit of weight because I just couldn't eat.  Not eating at staff meetings and grand opening/ground breakings set me apart.  But I felt isolated, but I did not have the word for how I felt.

Several participants described how they felt about the study as being "therapeutic" and "therapy."  Seeing that made me smile because I knew that I was not alone in what I thought and felt about the study.  And that, there, is the true value of a support group, why I go to those on FB even though they do have their downsides:  I am known.  I can talk about things without having to explain.  My life, my thoughts, my feelings, my experiences are accepted and shared, in part, by others.

What I was trying to say to my dear friend was that, for three days, my suffering with gastroparesis had value.  My experiences and thoughts mattered.  My suffering was seen as something that could help others.

It bothers me that that is not the case with my suffering from sexual abuse.  That topic is so very hush-hush.  Folk see it as inappropriate and disturbing.  Talking about the topic in general, as something that happens out there or elsewhere is fine.  Talking about your experience and thoughts is not encouraged.  Is frowned upon.  Is forbidden.

When folk talk about the rates of childhood sexual abuse, you hear: 1 in 4 girls and 1 in 7 boys.  Look around any given gathering and that is a staggering number.  However, something few talk about is that those accepted numbers are based on reported abuse.  It is also generally accepted that it is more often than not that abuse goes unreported.  There is too much shame.  Too much social pressure.  Too much hurt ... overwhelming hurt and confusion.

But the thing is, when your suffering is not valued, when your experiences and thoughts do not appear to matter, especially as a way to help others who are suffering with the same, it is easy to believe that you will never be known and, therefore, never belong.  And that, sadly, you, your life, does not matter.


I still do not think that I got where I wanted to go with what I wanted to say, but I am hoping this speak, in part, to the thought I had.