The reality of living life with a chronic digestive illness

There is very little that is understood about living life with a chronic illness. Mainly because those of us living with a chronic illness are a minority and the bottom line is - when someone doesn’t have the experience of something or doesn’t know anyone going through the experience of something, they find it hard to relate to. And I get that, it IS a hard thing to wrap your head around. Also, many of us with chronic illnesses look completely fine. How could we possibly be suffering when we look like we’ve got it all together? Honestly, I think that may be the biggest hurdle we face in our day-to-day reality of living life with a chronic illness.

There are many chronic illnesses out there and they each have their own intricacies and difficulties. I am focusing on the chronic illnesses I live with - gastroparesis and ineffective esophageal motility. I am going to go through my reality and what this disease has impacted the most:

UNPREDICTABILITY

I never know when I’m going to get hit with symptoms and I never know how intense they are going to be. I could do everything right - I could eat safe foods, get lots of sleep, take all of my medicine, and BAM - get hit with a flare out of nowhere. Flare-ups can happen at any time and they can last anywhere from a few hours to a few days. Each flare brings something new and different. Mine are all completely unique - each flare presents a different set of symptoms. Things I typically experience: bouts of throwing up (sometimes every 20 minutes for days at a time), dizziness/lightheadedness, passing out, intense pain, cramping, loss of control over bowels, fatigue, headaches, nausea, bloating, vertigo, and dehydration. The unpredictability of my symptoms and flares makes planning even the simplest things a daunting task.

DIET

My diet is absolutely awful. My body can no longer process food, so the more processed something is - the easier it is for my body to digest. Processed junk is what my body thrives on. My dietary restrictions are strict. Certain things trigger symptoms and exacerbate flare-ups. Careful meal planning and constant vigilance surrounding anything involving food are a significant part of my daily routine. I can’t eat big meals past 3:00 or 4:00 PM and if I am going to eat that late - it takes careful planning and the ability to stay up really late so that my stomach has time to digest and process. Eating out or attending social events centered around food becomes a minefield of uncertainty and potential discomfort.

MENTAL HEALTH

The toll of living with a chronic illness should not be underestimated. Dealing with debilitating symptoms on a daily basis is frustrating and depressing. The need to constantly explain or justify my condition to others is isolating and I often feel misunderstood. I often have to miss work or social obligations and it makes me feel unreliable and a burden to others. I don’t want to miss these things but the severity of my symptoms often prevents me from “powering through.” Side note - never tell someone with a chronic illness to “power through” a flare-up, it hurts more than you could ever possibly know because we are trying and doing the best we can. The symptoms we live with on a daily basis would send most people to the hospital, so on a day when we are missing work or a social function or on days that we are saying we are in rough shape - it is BAD, just trust us.

DOCTORS

It is extremely difficult to find a doctor that can help manage my chronic illness specifically. My conditions are both rare and there isn’t much known about them separately, there is almost nothing known about them coexisting together. I’m navigating a minefield with little to no help. I find that I have a different doctor for each thing and those doctors tend to only focus on their specialty instead of trying to navigate me as a whole person and how everything impacts me altogether. For a long time, I was given antibiotics for every little thing with no one taking the time to think about how that could affect someone living with my conditions - that lead to thrush in my esophagus and c diff. Now, I am prone to those things whenever I take an antibiotic and it will be that way for the rest of my life. The same goes for medications. One doctor will prescribe me medication for one specific thing without thinking about how that medicine could influence other things. Managing all of my doctors and medications is mentally and physically exhausting. I am my own biggest advocate, I often have to fight for everything against doctors who just don’t fully understand the full spectrum of what I am experiencing. I am constantly searching for answers, trying various treatments, and coping with potential side effects of medications and procedures.

ADAPTING

Living with a chronic illness requires immense resilience. I have had to learn to adapt and find alternative ways to participate in activities that I enjoy while simultaneously managing my symptoms effectively. I am constantly advocating for my needs, seeking out the latest research and treatments, and finding the strength to face each day with determination. It is a job on top of my real, actual full-time job.

Living life with gastroparesis and ineffective esophageal motility has been an arduous journey, filled with challenges and obstacles. It has also been filled with growth, acceptance, and the ability to never give up on myself. It is crucial that I continue to raise awareness and foster understanding about my conditions, supporting individuals who are also going through what I am going through on our quest for improved quality of life and advancements in the medical field that benefit us. With increased awareness, empathy, and support - we will thrive and find hope amidst our daily struggles.