Gastroparesis is a chronic invisible illness that impacts every aspect of our lives.
We may appear "fine" on the outside, but what we deal with every day on the inside is NOT.
Gastroparesis doesn't discriminate by age or size. Some will lose a lot of weight, some actually gain.
A change in one's food diet may help improve symptoms for some, some are able to get by on liquid and/or pureed diets, and others require tubes and lines to receive their hydration and nutrition.
We struggle to find better treatments and improvements in our quality of lives.
We advocate for change, because we don't want others to have to endure what we have.
We form online friendships that become very dear to us. Our connections help us support one another during most challenging times, celebrate achievements, and unite to make a difference.
We are saddened with each green candle as we miss the ones that pass away, fear the loss of additional friends in the near future, and worry about our own path as we experience similar health stories of those we lose. Advocacy helps keep their memories and spirit alive in our hearts.
Special thank you to Melissa Adams Vanhouten, Shanna Harjo, Corina Castillo, and all of the Gastoparesis: Fighting for Change Advocates that helped with creating and sharing these and many more collages, memes, and personal stories for awareness this past month as well as other times throughout the year.
I saw this on Twitter today. It touched me and made me reflect on how chronic illness can impact the ways that we see and think about ourselves.
Most of us know what it’s like to feel broken or question your worth. Having a chronic illness, whether it’s invisible or not also can have that effect. Constantly in pain, fatigued, nauseated, and so much more can bring those flaws right before your eyes and keep them there. It is not our fault, we are not responsible for the illness, but it takes so much away from us and can make us question everything!! I know it has me time and time again.
Do I have worth? Absolutely & so do you!
But believing that and feeling that when the smallest action takes so much out of you, when treatment plans just don’t work the way you (and others) hoped they would, when careers are lost, when vacations and family events are missed that you really wanted to attend, when no one understands how much you hurt or how rotten you feel, when you think you HAVE to hide how you feel day in and day out because you can’t stand to see your loved ones worry or hurt, when you feel so awful that you have no chance of hiding it but also don’t have the words to describe, when you look down to all of the medical scars and machines doing what your body no longer can, can make it feel nearly impossible.
Regardless - you are special, unique, loved, and important. You still deserve to be loved, broken pieces and all, just as you are. Not only by others, but even more importantly loved by you. Allow yourself to be loved just as you are. (And yes, I’m keenly aware it’s much easier said than done.)
On June 24, 2019 gastroparesis patients from across the country came together as a united front to spread awareness and make our need of more research and better medical treatments known. This was not an easy trip by any means for me, but I felt that it was a meaningful and worthwhile trip for not only myself personally, but for so many in the gastroparesis and GI motility disorder communities.
I am extremely fortunate to have had support and encouragement from my family, online friends, and even my therapist to remind me that it may be a risky and difficult journey physically, due to my health, but also had the possibility to be a unique, purposeful, and special opportunity to me mentally and emotionally. So with fears in the back of my mind, curiosity and the desire to meet others in my online support group, the focus of possibly making a difference, and the determination to follow through on my responsibilities as a patient advocate and friend, I traveled to Washington, DC with my father and teenage kids. Not only did we go to DC to attend the #DCgreen2019 patient-created Gastroparesis Rally on June 24, but also for me to attend IFFGD's (International Foundation for GI Disorders) "Hill Day" event which included a short conference and a day of appointments with US Senate and House of Representative offices.
I spent the morning of June 24th with a few friends that have similar health issues as me, as well as with other digestive motility disorder advocates. Some of these other advocates were parents, medical professionals and IFFGD staff members and volunteers. The speakers during this morning conference were very interesting and informative as they shared with us the reason for advocating, important medical related information about doctor-patient communication, and how patients can be more proactive in raising awareness and pushing for legislative bills that can improve patient healthcare and treatments. Some of the speakers that we listened to were Ceciel Rooker (IFFGD president), Dr Baha Moshiree (GI motility specialist), Hayley McCorckle (IFFGD's public relations), Dr Frank Hamilton (chief of Digestive Disease programs branch in Division of Digestive Diseases and Nutrition at NIDDK), Peter Herzog (Washington representative for IFFGD), Dale Dirks (Washington representative for IFFGD, and Susan Chittooran (Patient Engagement Project Manager of FDA).
At lunch, those of us in the Gastroparesis Support Group who were attending the rally, left to go to our rally location. Originally planned to take place on the Capitol Grounds at Union Square, the rally was moved to an indoor venue, Ivy City Smokehouse, due to the threat of severe thunderstorms.
The energy level increased as everyone began arriving at the venue. Hugs of joy, physically meeting friends met online, and making new friends that actually understand and share the desire to inspire positive change for our community led to a comfortable, exciting, and personal atmosphere. Often feeling out of place, like a "freak" due to health issues or awkward because of health accessories needed such as feeding tubes, ileostomies, central lines, etc - many found this environment allowing each of us to feel "normal" as we were not alone and could truly understand and empathize with each other. As great as uniting and visiting with each other was, the afternoon would consists of even more encouragement and motivation.
Melissa Adams Vanhouten, an amazing friend and advocate welcomed everyone to the rally and shared a moving, inspiring, and focused speech, which is linked below. Dr Michael Cline of the Cleveland Clinic spoke next, sharing important and beneficial facts about gastroparesis, treatment options at the present time, diagnostic tests that he finds most helpful and that should be done by all patients to check the motility of the entire digestive tract as well as autoimmune testing was suggested. He was kind enough to stay and answer questions from our patient community. His informative speech is also linked below. We also heard from a fellow gastroparesis advocate, Debbie, as she read letters of support and encouragement that the Rome Foundation and Dr Pascricha from Johns Hopkins sent to our patient community for this occasion. A dedicated, loving, and grieving father, James shared his daughter Nicole's personal story. He shared beautiful memories of her, the heartbreak of her illness, her love for life and her desire to make a difference and help others even during her own struggles, as well as his determination to keep her dream and memory alive by advocating for the gastroparesis community. A beautiful memorial service was then led by a fellow gastroparesis patient, Kristine. The rally ended with numerous brave patients sharing their stories. They included a child, a young adult with active sepsis, support group members that overcame obstacles to make it to DC, and a daughter expressing concern for her mother while also explaining that they are fighting so hard to advocate not only for her but even more so for the young children that are having to live and deal with this debilitating illness.
Two of the speeches can be heard here by clicking on the speakers name:
Melissa Adams Vanhouten
Dr Michael Cline
Many gastroparesis members attended the #IFFGDHillDay event the following day, June 25th, alongside IFFGD (International Foundation for GI Disorders) staff members and other GI motility disorder advocates. We were divided into small groups based on our state prior to our arrival at our scheduled appointments with US Senators and House Representatives (or their staff). My North Carolina group had a busy and meaningful day meeting and talking with the offices of Senator Burr, Senator Tillis, Representative Butterfield, Representative Price, and Representative Walker. We were supposed to also meet with Representative Foxx, but due to unforeseen circumstances in the schedule, we just left a packet of information with her staff. During each of the meetings, we discussed the house bill 3396, also known as the Functional Gastrointestinal Motility Disorder Research Enhancement Act of 2019, that we hope will be supported and passed, as well as why it is important to our health community. We personally shared a portion of how GI Motility disorders has impacted our lives. (Unexpectedly, tears escaped when I was sharing my personal story with them, especially when I spoke of how it affected my kids and my career.) Other discussion points, besides HR 3396, were our pleas for them to increase NIH (National Institute of Health) funding, increased Department of Defense Gulf War Illness funding, and a FGIMD program for the CDC (Center of Disease Control).
By far, regardless of how purposeful, meaningful, and powerful these two days were, it did not come easily. It took a lot of energy that many of us struggle for daily. As people living with chronic illness, attending these two important events required us to put our health at risks. Many of us chose to power through debilitating symptoms and add additional physical stress to our already worn bodies, all with the hope that our sacrifices would be worthwhile and make a difference, if not for us, for the gastroparesis and GI motility disorder community as a whole.
In conclusion, we left feeling a sense of pride, encouraged by new connections and deeper friendships, and inspired to continue forward with our advocacy efforts. Feeling a sense of accomplishment, we are now in the process of determining what our next courses of action will be.
On June 24th and 25th, 2019 a #DCGreen2019 rally will be held to bring awareness and knowledge about #Gastroparesis and #FunctionalGImotilityDisorders to Washington, DC. This will be held in conjunction with IFFGD (International Foundation for Functional Gastrointestinal Disorders).
For those that are unable to physically participate in person, a virtual march will be held as well. Everyone will be able to participate, whether in person or from the comfort of your home.
Thank you to all involved in the planning phases! If you'd like to join in the planning please feel free to join us at https://www.facebook.com/groups/GPMarch/?fref=mentions&__tn__=KH-R! More specific details will be available at a future date.
The tentative schedule in my friend Melissa Adams VanHouten's words:
"Monday will consist of an IFFGD-sponsored speaking event focused on Gastroparesis-related presentations in the morning (at a central hotel conference site) and our Gastroparesis rally (at the Capitol, within walking distance of the conference site) in the afternoon.
Tuesday will be the day we meet with legislators. We will meet briefly with the IFFGD in the morning to cover tips on engaging and conducting a successful office visit and then break up into small groups and head back to the Capitol for meetings with our individual representatives. At the end of our sessions, we will meet back at the conference site for assessment and some closing remarks.
Please keep in mind the itinerary is tentative, but the dates are now concrete. You are welcome to attend any or all of these events. Additional details to follow!
Let's go create some change!"
I recently discovered a new artist, Stine Bramsen. When listening to her music, two of her songs, which I have included below, really caught my attention. I know in reality that the her lyrics and messages are suppose to be different from my interpretations. I am aware that she is singing about relationships and the challenges that can occur. However, the way I personally relate to these songs, are not in regards to a romantic relationship with another person. Instead, they make me think about the relationship I have with my own body and chronic illness.
You see, to me, her song "Not Giving Up" is an encouraging voice to my own personal health challenges. It represents the way I feel. It reminds me of how a conversation between my inner spirit and illness may go. No matter how hard I try, I can't get away from my body. My body, sometimes physically from chronic illness symptoms, sometimes mentally from being exhausted of coping and dealing with chronic illness on a daily basic, creates pain that I want to escape, but can't. My body, physically and at times mentally, can be, and often is, my body's worst enemy.
My body is ALWAYS trying to fool me. It tells me that it's hungry, needs nutrition, needs hydration, but when I attempt to provide it with what it needs, my body betrays me. Instead of just using the nutrition to help me, it creates crippling abdominal pain, bloating, nausea, and at times heaving or vomiting. My mind also fools me, persuading myself that this bite or swallow will have a different, more tolerable result, until I actually follow through. Then BAM! Consequences arise. Not to mention how little I can actually handle physically, before relentless exhaustion overcomes me. How the hell do you trust a body that is constantly deceiving you?
But, I have to stay. I can't trade my body in for a new one. The scars of my chronic illness are all over me, internally and externally. Scars from numerous surgeries and procedures. Scars from painful and negative medical experiences, hurtful judgmental comments, medical appointments gone bad, medication related side effects. Scars from missed opportunities with my kids whom I love immensely, and the loss of identity from leaving a career that meant so much to me. Scars that remind me of the path my body and health have led me down, scars that have an impact on how I view myself.
I can't deny - there are times, low challenging and terrifying times, when I want to be completely be done with my body. Times that I have contemplated how I can end the pain because it just won't stop! Nobody cuts or harms me the way that my health has. Illness just won't give up on destroying how I feel.
At the same time, part of me is resilient and won't give up either. My soul is not giving up, it fights to put illness in it's place. I strive for better physical health, while also respecting my need to feel ALIVE, to feel like I am living and not just existing. My heart and voice are pushing me, not letting me give up on myself. Because of my family (especially my kids) and God, I keep living. I'm trying to let go of the grip pain has on me, let go of the bad memories, let go of the guilt that illness has made me feel, let go of the power that disappointments from being sick has made me feel, let go of the negative impacts being ill has had on my life and the way I view myself. I'm attempting to learn how to let go of the things that I can not change or control, while not giving up on ME.
I am appreciative of others that have not given up on me, and that have in return helped me to not give up on myself either, even if my illness itself will not give up and disappear. I thank my loved ones and the caring doctors that have been an essential part of my journey.
Unfortunately, not everyone has been encouraging, understanding, or supportive. There are people, some that know nothing about me, and some that were responsible for helping me, that bring me down with their irresponsible judgements. Admittedly, I too, have passed harsh judgement on myself. Most of the time I can forget and forgive those that pass judgement because I know that they don't know what life behind my front door looks like; but the hurt of being judged still appears and is still unnecessary. Even more so, the heartache of people in the chronic illness community, being denied help or dismissed from medical doctors or nurses that lack compassion or willingness to truly listen is inexcusable; Which brings me to the other song I found today by Stine Bramsen, "Don't Judge Me."
Cruelty and judgments, even when deceivingly done behind my back, hit hard. Not only does it devalue or minimize the impact of my illness, but it also sends me down a misguided path of shock and despair. Just because one does not have the capability of feeling my pain, feeling my nausea, living the negative consequences of my illness, or witnessing the decisions and choices that I make (disregarding the costs that I will have to accept later in exchange), does not give them the right to judge. Trust me, I would have no reason to pretend or exaggerate. There are no gains that would make it worthwhile. Why would I choose a life of torture? I can't undo the painful truth of how horrible my body feels, I can't undo the honest truth about how much pain food causes, I can't undo how much fatigue I experience, I can't undo the amount of nausea and lack of sleep that I endure. I can't undo the reality of my health. I can't undo the harm that some judgments have on my spirit.
As Stine's beautiful and powerful lyrics say,
"I can't undo the painful truth, I can't undo, God knows I wish I could.
Don't judge me, cause I can't have, I can't have your blame on me,
cause you were not there, you were not there;
so don't judge me, I can't take it anymore."
Sometimes, I "need to hide my pain away" to try to reclaim and live life. It doesn't mean that I am not hurting. Sometimes, when smiles and laughs are seen by you, inside I feel like I'm crumbling apart or that my insides are about to explode at any moment from pain, or feel like I will soon begin heaving by the aromas around me or intense nausea, but I choose to hide it in order to help those I love enjoy moments with me. I sometimes hide my miserable symptoms to strive for something meaningful and cherished in my life. I choose to hide my symptoms, to protect others from worrying about me, or in attempt to protect my own mentality and spirit, if only for a few moments. So unless you live with this illness, you will never know how life-changing and terrible this illness can be on one's life.
"You'll never know how I hurt inside. You'll never know how I've cried and cried and cried."
Unless you live with the daily pain and consequences of chronic illness, don't judge me or others.
"I don't deserve you hate on me." Neither do they.
Trust me, those closest to me, know that "I am hard enough on me" already. I already downplay and minimize the symptoms I experience more than I should. I judge myself harshly by what I can't accomplish but desire so much to do. I judge myself for what I miss out of in life (especially when it comes to my kids), for what I have had to give up (like my career). I judge myself critically for why I am not better yet. I judge myself unkindly for judging myself on things that are outside of my realm, outside of my control. So please don't judge me, I can't take your judgement or blame anymore.
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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