My Chronically Ill Diaries: Eat, Drink, & Be Merry?

The holiday season is upon us, complete with parties, festivities, and a lot of food.

Everywhere you go food is part of celebrating the joy of sharing this time together. From the special displays in grocery stores full of holiday treats to your local café offering decadent hot chocolates paired with delicious baked goods, we immerse ourselves in food. This is a time of year when food surrounds us differently than in other seasons.

Eat, drink, and be merry is one of the mottos of the holidays and so we do exactly that.

We indulge as much as we can, as well as we can. The period from November through early January and our propensity for overindulgence is why gym memberships skyrocket in late January and diet companies offer their best discounts of the year on their meal plans, shakes, and so forthright after New Year’s Day. People eat, enjoy, and partake more than they typically would.

I love food, so I have never hesitated to indulge in the tastes of the season. I love sharing meals, sweets, even a simple cup of hot chocolate with a good friend.

Part of my joy with food stems from growing up with grandparents who owned bakeries; we were always surrounded by fresh bread, donuts, cakes, pies, and cookies. It was a child’s dream. That coupled with the fact our large extended Polish family was often together and when we were gathered, we ate. We talked, we laughed, we shared large meals, we relaxed, and then we ate some more.

Believe me, it was even better than it sounds.

From childhood to adulthood, whether it was my mother’s cooking or visiting relatives, our family life taught me a healthy relationship with food that I carry to this day. We did not overeat. We ate complete meals at the table. We talked, shared, and joked as we ate, enjoying the food and each other’s company.

Growing up, my family taught me that food lovingly prepared and shared is an expression of love.

I still love preparing and eating food. Aside from a brief time in my late twenties, I do not count calories and I do not diet. I do watch my nutritional intake and I know that woman cannot survive on bacon cheeseburgers alone (although it would be fun), so I focus on eating healthy foods without obsessing over it.

While food has always been a large part of my life, I have been forced to change my relationship with it. Not out of choice, but due to necessity.

I still love preparing and eating wonderful meals. I always will. However, now is my approach to eating is dictated by my illness. What I eat, when I eat, how much I can eat: food is a daily challenge in a very real way for me now.

After a lifetime of embracing and enjoying food, it is has been difficult to adapt to these changes. Yet in doing so I found a new way of life.

I have been hesitant to share this with anyone outside my immediate circle, but I am committed to sharing my journey in the hopes of helping others. My experience is that if you eat differently than what is considered “normal”, people assume you have a disordered relationship with food. So many people suffer from eating disorders that for those of us who are forced to rethink our relationship with food, it is easy for people to make assumptions.

If your body requires you to eat in an atypical manner, people assume that there is a psychological problem.

Personally, I have been told I have “body issues” due to my eating. If I lose weight, it is assumed I did so on purpose. People do not realize how living with a chronic illness changes so many aspects of your life that it is difficult for those of us in the middle of it all. Just figuring it out can be a process of trial, error, frustration, and eventual acceptance.

Living with scleroderma, I knew it was a strong possibility that I would develop esophageal problems. In truth, they began slowly, and I did not recognize what was happening at first. Bit by bit, I saw that I could not eat as I normally would. Nothing agreed with me, and I began to suffer terribly when eating as I had typically for my entire life.

I spoke to my doctor and thereafter altered what, when, and how I ate. If I am being completely honest, I did not want to do this, but I had no choice. I began what is called a “Low Residue Diet” or as I call it, “The Soft Food Diet”. To make it palatable, I created my version of the Mediterranean Diet, with an emphasis on easily digestible foods.

While the particulars are not important, what matters is that I felt that while I needed to make changes, I was determined to retain some part of who I am.

I fell in love with the culture of Mediterranean Italy while visiting there and I wanted to make this transition at least somewhat enjoyable. Fish, pasta, soft-cooked vegetables, and small salads have become my norm, often with an Italian flair. I can drink wine, but only white wine in small servings. I have learned to embrace who I am at this moment and lean into it. I eat smaller meals more often, which is better for your health and weight.

As I read and retaught myself how to eat in a way to best serve my body, I began to see that I am not alone. Cancer patients who need organic and whole foods, heart patients who must cut back on sodium, people who suffer from anxiety who eliminate caffeine; the link between what we eat and its impact on our physical health is more apparent than ever.

If you or someone you know is facing formidable life changes due to illness, I have two pieces of advice; you may not be ready to make such changes but make yourself comfortable with your new reality. If your health depends on it, recognize you have no choice. Your quality of life is worth altering things. You are worth that and more.

The second takeaway is that you try to embrace any changes as much as you can by making them your own. In other words, you can still be yourself, albeit with a few modifications. It is far too easy to lose ourselves if we are being forced to change, so don’t do it. The change will be too severe and [likely] send you spiraling into a depression, which is not what you need at this moment.

Be who you are, in a new, updated version.

If you love cookbooks, buy some new ones and experiment with different recipes. Maybe you adopt a diet that is more vegetarian or vegan and less meat-oriented. If you enjoy eating out, go ahead and do so, but select where and what you order with more care. You may find a new favorite spot in the process. If you miss your favorite food that is now difficult to eat, parcel it out. For me, it’s a good Caesar salad or a giant hamburger loaded with gooey, runny fixings. I still eat both, but less often and I portion them out over a few sittings.

If the people around you find the changes you are making cumbersome, difficult to accept, and indicate that they find your new ways of living problematic, please hear this clearly: you do not have to explain anything to those who refuse to try and understand. Knowing you are tending to your health and taking control of it is empowering. If someone in your circle gives you grief or acts as if you have developed some other problems, let it and them go. Be frank as to why and move on. You have better things to do than explain yourself to others.

Your life is a gift; we do not have time to squander on people who fall short on understanding and compassion. The new version of you may be different. She may be facing challenges but meet them while retaining the essence of who you are.

Use the changes to improve your health and strengthen your zest for life.

My final piece of advice is to live authentically and live well. If anything, embrace who you have become because with those changes comes wisdom, experience, and a new sense of self. Without realizing it, you serve as an inspiration for others.

Time for dinner; I am going to eat and savor it. As my Italian friends would say, [raising my wine glass] salut and buon appetito!

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