Wednesday, July 13, 2016

Oh, the Joys of Advocacy! Should I Throw in the Towel?

Let’s talk about GP reality!  GP reality is that every single day I struggle to get out of bed, and when I accomplish this, I sometimes wish I hadn’t.  GP reality is that I am often nauseous and occasionally vomit.  I am starving, miss food, cannot eat, and am in pain much of the time.  My stomach and abdomen are bloated, and they are burned and permanently scarred because I must use a much-too-hot heating pad just to make it through the day.  GP reality is that I can almost never leave my house, and when I do manage it, I can only stay out for short periods of time and pay for it dearly the next few days.  I miss nearly all family gatherings and significant events in my husband’s and daughter’s lives.  GP reality is that I am so tired I cannot walk up the stairs at night by myself anymore, and, in fact, I cannot even remember how I got into bed most evenings.  GP reality is that I see people suffer and die around me every day and wonder if I will be next. GP reality is that no one wants to hear this.

GP reality is that even though I am quite sick, I work in the support groups.  And because I am an administrator in many of them, I have to make tough decisions based on the rules and what is best for the groups – and many people hate me for that.  No matter what decision I make in a dispute, or regarding a rule, someone ends up unhappy with me.  I try to be gentle, and I try to explain, but it does not ultimately make a difference.  They still detest me.  Yet I go right on making those difficult decisions, despite their attitude and push-back, because I care about the groups as a whole and want them to survive.

GP reality is that because I have chosen to advocate, I sit here sick at my computer every day, all day long, and beg someone, anyone, to help us.  GP reality is that very few do.  Most of what I do is ignored by those inside and outside of the Gastroparesis community.  GP reality is that probably very few are reading this. 

GP reality is that not all those who proclaim “love” and “light” demonstrate these qualities toward others.  I am mocked, threatened, harassed, and told I am an embarrassment.  I am accused of ignoring and dismissing people, stealing ideas, taking credit where none is due, and “bullying” people.  GP reality is that no matter which projects I decide to pursue, someone thinks these are not quite as worthy as their own “pet” projects.  GP reality is that I can get almost no one to pay attention and contribute anyway. 

GP reality is that when I say “my” people, “my” groups, and “my” community, I am accused of being on a power trip or of thinking that I have some sort of leadership position here that I do not officially hold.  GP reality is that it is not because I am egotistical or seek control.  No! Rather, I refer to people in the Gastroparesis community as “mine” because I am a part of this community.  These people are my life.  I love them, and I claim responsibility for them – every one of them.   Indeed, I have an obligation to them, and this means that I cannot step aside, avert my glance, and ignore their problems.  No, I do not forget them for a single second.  I share their disease, their pain, and their hopes, dreams, and prayers for a cure. 

GP reality is that though it makes me uncomfortable to discuss the most intimate parts of my life, I share very personal stories, thoughts, and feelings in an attempt to make people understand what we go through, only to be told that I am self-promoting and egotistical.  GP reality is that my words, and my story, are the only weapons I have in this battle against GP.  GP reality is that though I try very hard not to harm or upset anyone, it is never enough, and those who want drama and strife still actively seek to create it, even to the point of inventing stories. 

GP reality is that there are those in this community (individuals and organizations) who refuse to share articles, posts, pictures, memes, events, blogs, and other awareness-related information simply because I have written or endorsed it.  There is no thought or concern regarding what is beneficial for the community as a whole.  If it does not promote their own personal cause, then it is not acceptable.  If I do not mention their name, their cause, or their organization, then it simply does not get shared – and, in fact, they work to shut down such information entirely – merely because it was not them or their group that accomplished the goal or initiated the movement.  GP reality is that everything I do now is public, every breath I take is scrutinized, and if I have an “off” day, I lose followers – which means I hurt our cause.  GP reality is that this is a heavy cross to bear.

GP reality is that we, as a group, are largely ignored, that very few care about our plight, and that even the ones who do are highly unlikely to get involved in any meaningful way.  GP reality is that we push for awareness proclamations, bills, disability, better medical care, effective treatments, and a cure – but that these things will not likely come in our lifetimes.  GP reality is that right now, at this moment, many of us are mistreated, misunderstood, receive sub-quality care, are in financial ruin due to unemployment and outlandish medical expenses, and that we mostly go unnoticed. 


But you know what else is GP reality?  GP reality is that even though I am sick and many, many times want to throw in the towel, I keep going – as do all of you.  We find ways to “suck it up” and move on.  We tolerate the pain, nausea, and weakness, and we manage to get through the seemingly endless, meaningless days, hoping for something better in the future.  We do what we can, despite the limitations this illness imposes on us, and we live to see another day.

GP reality is that even though some in my groups dislike my pronouncements (and me), most do not.  Largely, they understand that not everyone will always agree upon specific rules and that disputes are bound to happen.  We often have different perspectives and manners of dealing with our illness and the complications of life that stem from it, and the bulk of our members accept and respect the choices of others.  Most people enjoy the groups and find them to be a source of support, information, friendship, and understanding.  They are safe havens for the vast majority of GPers who join.  GP reality is that most group members come into these groups every day and try to help people, complete strangers, because they care and want to make a difference in the lives of others.  They are kind, compassionate souls who sacrifice their own comfort and set aside their own needs to assist those who are lost in finding a way to survive this cruel disease.

GP reality is that though I am often harangued for my advocacy work, I am also praised and thanked far more than I deserve.  Many people here go out of their way to show their appreciation with their kind comments, “likes,” and private messages expressing their gratitude.  Some have even sent cards and gifts.  Others simply follow along and remain on my friend list and in my groups, which is, in and of itself, a means of support.  GP reality is that though I often feel like I must defend myself against untrue and unkind accusations, the pressure to do so comes only from me. 

GP reality is that when I want to “throw in the towel,” scores of you write me or comment on my posts to show me that I matter and that what we are all trying to do together matters.  GP reality is that I have real, true friends here who show me more gentleness and support than I have ever known before in my life.  And every now and then, GP reality is that someone “important” out there notices an article, meme, poem, or video that I have made and shares it.  Occasionally, someone contacts me to let me know that we are being heard and that there is hope for the future, and on rare occasions, even an organization that finds me distasteful admits that advocacy is really taking off and our efforts are being felt. 

GP reality is that, sometimes, I have a far better turnout for “green” events than I expected, or a project like “Right Care Action Week” inspires those who normally pay little attention to take notice – or even to participate.  On occasion, someone who has never heard the word “Gastroparesis” calls or writes to let me know that because he saw my blog or video, he now knows of our struggle.  And there is the hope that one day, one of our projects, perhaps #TakeABite4GP, might really take flight outside of our little GP community.  GP reality is that it only takes a few people in the right places to get us the help we so desperately need.

GP reality is that though I detest this illness and the damage it has done to me and so many of my friends, I am truly far more blessed than I was before being diagnosed with Gastroparesis, and I am likely wiser, more compassionate, and more connected to others than at any other time in my life.  I have experienced genuine kindness, understanding, friendship, love, hope, and belonging.  I am more keenly aware of the pressing needs of those around me and of how desperately they require help.  GP reality is that I now have a purpose.  And that purpose is you – it is serving the needs of my Gastroparesis community, the chronic illness community, and my fellow human beings.  GP reality is that I need to learn how to “shake off” the negative comments, attacks, jealousy, and harassment and do what I know I need to do: advocate. 

Yesterday was a very bad day – one of the worst I have ever had – but today, I still stand.  My community is in need.  My friends are suffering.  How can I turn my back on that?  I am weary, and I get discouraged, but I have to continue the fight.  It is life or death. 

So, I ask you to please pardon my rants, my insecurities, my lack of understanding, my bad decisions, and all my other frailties.  I beg you to forgive me for not doing more, for my lack of ability to accomplish our goals, and for all my other failings.  GP reality is that it is not due to lack of desire or will.  GP reality is that I am trying. I am trying.


  1. Hang in there Melissa! You are doing your GP community a great service with all the advocating that you do. I see you out there in the trenches with me trying to advocate when it feels like we are mice going against a lion.
    Sometimes it feels as if we are getting no where fast, but if we do not, then who will?
    Keep your chin up and march forward!

    Lisa Davis Budzinski
    VP of CPSFoundation

    1. Thank you, Ms. Linda! I know you are right. I am very grateful for your support and kindness!

  2. You're the best at what you do for us...keep going and never give up!!!! Love to you and our entire community. Don't let jealousy get in the way....ever. Xo

    1. Thank you, Ms. April! Greatly appreciate your kind comments. Much love to you, too.

  3. Melissa I love you to the very bottom of my heart! You are an inspiration, a warrior, an oh so good kind hearted, love filled, awesome, gracious woman! I love you and I see no failure in you, at all!! With much love and respect, your friend Freda Sullivan <3

    1. Ms. Freda, I am so thankful for your friendship, your support, and our groups. I do not know what I would do without you all. I love you, too, and am so thankful to have you in my life!