"I believe in you" are some of the most important words a chronically ill patient could ever receive.  When battling an invisible illness there are many stereotypes that are faced and overcome on a daily basis.  Chronically / invisibly ill patients battle the weight of their very diagnosis, the accusing stare of an emergency physician who may question that diagnosis, the sheer pain when trying to move only to realize today is another bed day and the tasks in place now have to either be canceled or rescheduled.  Possibly the struggle is in the mind with their own thoughts whether they were born with their illness or it was thrust upon them due to any number of circumstances.  As we all know, the psyche can be quite the warzone and statistically speaking there are many patients who suffer from physical illnesses that also wind up with accompanying mental health diagnoses due to extreme stress placed upon the patient.*

​Chronic / Invisible Illness isn't kind and doesn't seem to show up alone.  I have found that it comes with other ailments either incurable or at times, treatable, yet most often not to the level of keeping the patient continuously comfortable.  Chronic and invisible illness is cruel indeed but it builds a strong warrior with tenacity, courage, tenderness, empathy and overall compassion for, sadly, the next newly diagnosed patient.  It changes you forever. How it changes you is absolutely up to you.  One thing I long for is change in perspective for the outer world:  for those who cannot or for whatever reason choose not to understand us. 

We, as patients, should applaud ourselves each and every day for being the warriors that we are. We war over the preservation of our health first and foremost!  We war for our families! We war for our children and their needs whether we are in the hospital or not!  We war for #advocacy and #awareness with fellow patient advocates and members of society using every form of social media possible. In one of the most selfless of acts we war for each other in support groups while we battle our own illness(es), taking the time to reach out to one another in posts, messages, sending cards, gifts and any form of support we feel necessary as a means of encouragement to our fellow man. 

​When one thinks of the "invisible" piece in illness the focal point may be placed on the excruciating feeling of pain, chronic nausea, fatigue, malnourishment, lines that may be hidden to a certain extent, hair loss that could be covered here or there, depression or anxiety that can be aided with medication and talk therapy yet I wonder how many think deeper into the invisible of the dark hollows of the soul where not many venture nor even talk about? Invisible and chronic illness strikes many lives in so many devastating ways and all too often warriors walk these roads alone.  In the same breath there are some who take up the badge or gavel as judge and jury and go on a man hunt as if we are burning the accused at the stake or some trial and lurking around corners to uncover every seedy detail of another's past or even making up one of our own to sell.  Each person's journey is their own most often riddled with rocks and roses.  Thorns and Thrones alike.  We are in this journey together and one would do good to uplift their fellow warrior for we know not the pain of their past or how hard they fought only to make this journey into today.

​Invisible means so many things.  Invisible can mean one day someone had it all and the next they found themselves broken and crushed when another walked away because chronic illness became too much of a burden to behold even though vows were exchanged. It can mean a diagnosis was given but after years of ambulance rides and long weeks in and out of hospitals divorce papers were filed in secret and now everything is divided right down to the children and the fish! Invisible could mean separate rooms, separate dinner tables and no conversation at all lest it turn into another round of verbal abuse too much to take because the wounds are so deep and the spoons are sparse.  Invisible can mean friendships that you thought would stand the test of time yet someone misunderstood one social media post and it wasn't even directed at them and now you and everyone that is a friend of yours is being 'unfriended' because you shared a post of a post of a post you found on Pinterest.  Invisible can mean you going out of your way to have tests performed again and again because your GES was positive at first and the second one was negative and now everyone is scratching their head and your GI has given up on you yet you are still distended and vomit at the very bite of a pudding cup so you cry all alone in the bathroom by yourself while searching online for support from your communities.  Invisible can mean you suffer mentally and physically yet no one seems to understand that illness is illness and you just long to feel loved, affirmed and accepted but you don't quite know where you fit it.  Invisible can mean you not only suffer yet your children do as well and you have no support from family or friends so your health continues to fail because every ounce of energy you do have goes into waiting on your partner and trying to maintain the house, finances and the needs of your children.  Invisible runs deep and it runs deeper still. 

​Invisible Illness Week truly needs more than just 7 days.  Invisible is 24 / 7 / 365.

​I long for the hurting, the broken, the lost, the cast aside and those who feel alone to know that someone out there cares.  I know what it is like to rely on faith and daily encouragement alone to get through.  I battled major depression and anxiety together.  How lovely, right?  Basically, I didn't care and I was concerned about everything at the same time.  It was extremely time consuming for me.  My journey has many mini chapters with a lot of lessons and stories all from different times.  I have endured much and I have overcome much as well.  I choose to focus on the good and the positive.  Even when life hands me a curveball; it may throw me off balance for a moment but I will steady myself and carry on. It is what I know how to do.

​I encourage every person battling #chronic #invisible #illness this:

​* Allow yourself grace for the journey. 
* Try not to feel like you have to justify yourself to anyone because you don't have to. 
* Give yourself time to acknowledge your illness if newly diagnosed
​* Know that you can do great things even with a disability. 
* If anyone doesn't like or love you then that is on them (given you are acting appropriately, of course)!!! You are treasured, you are valued and you are LOVED!
​* Don't (or try not to) worry what everyone else is doing or not doing.  Stress adds illness to illness.  Joel Osteen once said he doesn't go searching out what people write /say about him and that keeps his life positive. He said maybe he was ignorant but it kept him happy. I thought that was great so I put it in here. 
​* Be true to You. Stand in your truth and those who are meant to stay will stay and those who are meant to leave in their season will.  That came from my personal development coach, Dr. Donna Mogan in 2007. Great Coaching!
​* Take it one day at a time.  Be gentle with yourself. Pace the race Life is a journey, not a destination, remember?


Be #Hopeful, Be #Visible #beYoutiful YOU #IBelieveinYOU
#Gastroparesis #Diabetes #Crohns #IBS  #Fibromyalgia #Neuropathy
​#Depression #Anxiety #Autism #Hashimotos #Lupus #TBI
​#Cancer #ChronicFatigueSyndrome #Migraines #HeartDisease
​#ChronicPain #ChronicIllness and many more....

Links:

*Chronic disease and Mental Health info CDC

​Stress Management / Basics (Mayo)

​US National Library of Medicine (Home - NIH / PubMed article search)

(I placed the PubMed link because you can search out many medical research articles in this site for example: I was researching biofeedback and migraines.  Extremely useful I thought. I hope you enjoy!)

My name is Stacy Sawyer and I have been battling the monster called Gastroparesis (GP) since 1995. I had issues for awhile but this was the year of my official diagnosis. This disease took away who I was before GP. I was a very successful long-distance runner working my way through paralegal school with dreams of Law School. I was a divorced mother of two. I was always health conscience and I lived life vigorously. I had many dreams and goals in life.

I was working one day and I felt dizzy. I passed out and ended up in the hospital. Then my stomach and bowels shut down. I went through many doctors. Some said it was in my head. I was accused of being a drug seeker when I cried in real pain. I ended up being operated on many times. Unnecessary surgeries from uneducated physicians trying the quick fix. I was desperate for a cure when there isn't one. I ended up in icu many times with line infections from my picc lines and feeding tubes. I weighed 85lbs when God worked through a nurse at Baptist hospital named Jeanne to save my life. She gave me the name of a doctor who sent me to, "the Gastroparesis magician", Dr. Thomas Abell.

I saw Dr. Abell in 1995 and in 1998 had my gastric stomach stimulator placed. It got me off of a feeding tube after almost two and half years. It was truly a miracle moment for me. I met and saw many patients that were just like me! Dr. Abell was caring and actually listened to me. I ended up having a partial colectomy by Dr. Lahr in 2000 to fix the lower half. Both of these doctors were sent by God to help me and others like me. I truly believe that ! I am now 45 yrs old and have had a total of 45 stomach surgeries. I feel like I should have a zipper put in my stomach!!

Over the years I have struggled but nothing compared to hearing my daughter and son both had it. I felt like the breath was knocked out of my body each time. Raven was diagnosed at 12 and is now 22. She has had pacer surgery and a partial colectomy all by age 14. My son is 25 and is seeing Dr. Abell soon about a pacer. We all have GP from another rare unnamed disease that we all share. A mutation in our Chromosome ten that is being studied by Dr. Abell and Doctors in Sweden.

Now is the time to keep pushing awareness and advocating for research dollars. I, my Gp sisters and brothers, have been screaming for help for anyone who would care to listen. We have a difficult time getting sponsors or people to sign petitions or bills such as #HR2311 that would help those of us starving to death in a room full of food. We need to talk about what it's like to go to Christmas dinner or Thanksgiving and not be able to eat. Sometimes we can't go at all because the smell of food will make us sick. We can't go to restaurants and socialize. We can't go to the movies because many of us have to be near a restroom or we might vomit on someone accidentally. Many days we are incapacitated with pain from rotten food in our bellies. Some days we are constipated and in pain. We are lucky to have any good days at all. 

Gastroparesis effects our relationships and friendships. Do people not understand that it is like having the flu 365 days of the year??  We are alienated and left alone to a monster of a disease with no cure and little research. It feels like a rat inside of my tummy and days with severe pain. Gastroparesis is not an illness that can be tied up with a pretty little bow. There are many diagnosis that come with it. I have lost MANY friends to this illness. That's why I have been advocating since 1995. We are seeing change but we MUST raise our voices as one. We must never be afraid to show the true face of GP. We deserve help and an #ALS moment for our cure. I am praying you have compassion towards our community and that many will #TakeABite4Gp for those of us who can't!

​Stacy ~



Will you consider joining Stacy's group at:  My GP Monster

​Join the Take a Bite 4 GP campaign Facebook group: Take A Bite 4 GP