Gastroparesis is a cruel illness. It greedily takes and takes and takes and leaves you with heartache and an empty stomach. Once you think you have a good grip on the reigns, it shakes you right off as a reminder of who’s boss. Over the past four and a half years with gastroparesis, I’ve lost my ability to eat food all together many times. Sometimes I can eat a handful of “safe” foods, sometimes I can only tolerate Ensure, and at my worst I was fed via a feeding tube in my intestines.
Some GPers only need to slightly modify their diet, staying away from trigger foods but can eat pretty “normally” and others cannot have anything by mouth and rely on TPN (being fed through their veins). But I think all people with gastroparesis can agree, the hardest part of battling this chronic illness is the grief of losing every sense of normalcy- everything you thought your life once was.
For me, the most difficult part of losing my normalcy is losing my ability to eat my safe foods. When I got sick, I lost the ability to eat normally ever again. I’ll never eat vegetables, fruits, meats, dairy, gluten, legumes, or anything high in fat or fiber ever again. It’s just not something that’s physically possible. But I was blessed with the ability to tolerate a small number of foods like rice noodles, peanut butter, gluten free pretzels, skinless potatoes, and oddly enough, candy.
But at least twice a year my stomach abruptly stops tolerating anything. I spend a few days surviving off Gatorade and Pedialyte and slowly transition to clear Ensure and then regular Ensure. And that’s what I live off of for months. The longest I’ve gone without solid food was over 9 months. Once adjusted, it’s just another fact of life. My routine revolves around making sure I have enough Ensure and being able to keep it cold on the go. But the process to acceptance isn’t easy.
The Five Stages of Grief
Here’s the grieving process I go through each time I lose my ability to eat…
Denial- “This can’t be happening again”
Even though my gastroparesis is like a hilly rollercoaster and I know that my period of eating safe foods won’t last forever, when I first stop tolerating food again my mind tries to find every explanation besides my illness. I try to think about if I ate something wrong or maybe I just ate too much. But the outcome is always the same- I simply stopped tolerating food. This stage of grief normally doesn’t last too long for me. By day two it becomes pretty clear what the situation is and it leaves no room for denial.
Anger- “This is SO unfair”
I think of about 10 people right off the bat who are worse people than I am. I think of about 10 people right off the bat who haven’t suffered nearly as much as I have. And it’s selfish, but frankly, I’m angry…. why me? I’m pissed off that life is unfair and I got stuck with this god-awful illness I truly wouldn’t wish on my worst enemy. I get angry that I’ve already had so many things taken away from me, why can’t I just enjoy the limited amount of food I can tolerate all the time? Why is it always so back and forth? My anger comes in question form but never receives answers. I revisit this stage more often than I’d care to admit.
Bargaining- “If I could just eat one solid food, I’ll never complain ever again”
Sometimes I’m praying to God, sometimes I’m crying to my mom, and sometimes I find myself talking directly to my stomach somehow expecting it to listen. This is a stage I’m really good at. I’m good at making deals, especially when I’m desperate and willing to compromise. But you can’t bargain back your health.
Depression- “I feel empty”
I struggle with anxiety and depression in general, so this stage feels like home to me. I spend most of my grieving process wallowing there, waiting and wishing things would change. By this point, I know I need to begin to cope with the fact I can’t eat anymore but I just feel too sad to do anything but cry. I feel as empty as my stomach, like a huge part of my life was taken from me yet again. I mean, as human beings, we need to eat to survive. Life revolves around food. And when you can’t partake in something so basic, you feel left out and lonely. I’ve found over the years that the emotion of profound sadness needs to be felt. So, I let myself be sad for as long as it takes and one day I know I’ll wake up and the clouds won’t be so all-consuming.
Acceptance- “I woke up today. Sometimes that’s enough”
I often teeter between depression and acceptance for a little while. It’s like I know I need to jump into the pool of acceptance but I’m skeptical and afraid of the water so I toe-dip until someone pushes me in. Luckily, I have an amazing support system who helps me into the acceptance water when I can’t make the plunge myself. Once I’ve accepted that I can’t eat and that I’m faced with months of nothing but yucky Ensure (and the weirdly terrible after breath that comes along with it) I start to get creative. I’ve learned to freeze the Ensure to make it taste like “ice cream” (HAHA, yeah okay Carolanne…that’s a stretch). I’ve added syrups or mixed flavors to make a bigger variety of choices for myself. I’ve even gotten into the habit of drinking it out of a coffee cup to make it appear more “normal”. After a few weeks, I’m accustomed to not eating and life gets back to how it was before- just minus the food.
The five stages of grief are something I meet with more often than I’d like and some days, I slip back and start from square one all over again. But it’s completely okay to be angry and sad and well, not okay, sometimes; especially when living with a chronic illness like gastroparesis. Life is challenging and so are changes. I don’t always feel like putting on a brave face and pretending like everything is alright when all I want to really do is fall apart. So, I let myself fall apart and then I stand back up and get ready to take on another day. Because gastroparesis can take away my ability to eat but it can’t take away my ability to make my life the best it can possibly be.