Many people in my life are familiar with the fact that I live with celiac disease. It’s an auto-immune disease that affects around three million Americans, in which consuming gluten damages the lining of the small intestines. Celiac can often go years undiagnosed because of its wide range of symptoms, ranging from headaches to digestive issues to fatigue. The only treatment to manage celiac is to adhere to a gluten free diet.
Food is an every day, multiple times a day part of our lives. It’s more than a physical necessity, it’s a social experience; it’s how friends and family spend time together, it’s how coworkers break up the workday, it’s how you get to know a new place. Whether I plan on discussing having celiac or not, it’s rather inevitable when everyone at the table goes for the bread and butter before the meal, or friends suggest going to a beer garden and you hesitate at the idea. When people realize that I am strictly gluten free, they are more often than not completely understanding. In fact, they tend to be curious about the disease and interested to learn more, especially since the word gluten has spiked in usage recently.
The conversation generally ends with the conclusion that living gluten free isn’t so bad. What’s the big deal, life without croissants or mozzarella sticks or Chinese food (yes, soy sauce is a sneaky gluten-full food!)? With a quick hand motion as if waving the issue away, celiac is deemed inconvenient, but not life-ending. And I agree, from the list of diseases to have, celiac is in many cases the lesser evil.
What people may not realize is that I actually live with two diseases. After being diagnosed with the first, a second one made its debut in my life. It’s the ever elusive, swept under the rug, misunderstood disease called
Depression presents itself differently from person to person, but for me, it’s this area of my brain that remains dimly lit when the rest of my mind is docked up with bright eco-friendly LEDs. It arrives uninvited and overstays its visit. It’s this feeling that makes a logical person go mad, because it defies all sense of logic. It can overpower the reasoning that proves that everything should be fine, and that you’re grateful for numerous aspects of your life. But yet you feel a heaviness weighing you down, and a fresh set of tears at the ready when your mom asks at the end of a phone call, “but how are you doing, really?”
Celiac disease affects the lining of the small intestines, a place commonly referred to as our second brain. It’s where our body produces many neurotransmitters, such as serotonin, through the absorption of the amino acid, tryptophan. But studies have shown that even with the adherence to a gluten free diet, patients with celiac struggle to absorb nutrients at a normal capacity. In essence, the weakness of my small intestines is affecting the chemical balance in my brain.
For the past three and a half years of managing this lifestyle, one question that I’ve never gotten after revealing that I am diagnosed with celiac disease is:
To the select few that I have opened up to about my second disease, almost immediately some will ask that one-worded, loaded question.
The real “why” to ask is why we treat these two diseases as so vastly different? It seems foolish to ever ask why someone has celiac disease. No one pulls into the Stop & Shop of illnesses and decides which ones they would like to live with and then explains their consumer behavior to those who inquire about it. I could not imagine having someone reveal they have been diagnosed with cancer, and asking them why they have it. Few would ever choose to go through this battle. It’s in their cards, it’s in their genetic makeup.
Asking “why” shifts the focus from accepting the disease and treating it, to implying a sense of fault to the one who is suffering. Yes, there are certain factors that put one at risk for diseases. With celiac, a member of your family may have it. Symptoms often reveal themselves after a major life event or source of stress, in my case, when I moved out for college. And with depression, the same goes if you have a family history. And the same goes for life events acting as a trigger, revealing a chemical imbalance that needs to be treated. But asking “why” misses the point.
The real “why” should aim to change the way we react to physical versus mental illnesses. Opening up to someone about your struggle with any illness is difficult, and the best way to respond is with compassion and understanding. No one chooses to have this suffering in their life, and instead are seeking out ways to best cope with and treat their disease.
Instead of asking “why,” we should be really asking “how.” How can I help you get better? How can I become more aware of the illnesses my friends and family may be dealing with? How can I be proactive about my own health and take care of myself and others?
For me, saying no to croissants and mozzarella sticks or drinking water at a beer garden is the easy part. But that just scratches the surface. The harder, more challenging, more socially tainted part is that dimly lit room in my brain.
Mental illness is still a subject that society has yet to fully understand, and strip taboo from. But immense progress has been made, and awareness continues to grow. Celebrities are becoming activists, and research is improving our understanding of these diseases and their treatments. In my case, I tried to predominantly focus on “self-help” tips to improve my mental state. After stopping medication, I felt confident that I had my health in my own hands. I would exercise regularly, get enough sleep, eat plenty of protein and vegetables, read motivational books, and maintain a lively social circle. These are all important things to do, and we should continue to do them. But for some people, including myself, it is not enough. Restoring your mental balance may take a combination of efforts, and there is no weakness in having medication play a role in your treatment.
My parents always told me to never shy away from asking for help. This advice came long before my diagnoses, with its origins in a seemingly simple situation. When we would go grocery shopping, I hesitated to ask an employee where an item was. The aisles were labeled, so I was bound to find that bottle of vanilla extract eventually. My parents failed to understand this thought process as minutes would pass by. Why waste your time? What have you got to lose from asking, what’s stopping you? Their advice to their shy child at a grocery store later applied to professional situations, personal ones, and everything in between. They were never afraid to ask because those who ask and learn are the ones who come out ahead.
Do not be afraid to ask for help. You are not in this alone, and in fact, reaching out is the best thing you can do. Your family and friends are there to lend an ear. Physicians and trained professionals are there to assist you in treatment. Yes, I am aware of the wait time for appointments and the difficulties in insurance. I know what it’s like to be put on hold, to have your messages unanswered, to lose track of who you called when.
Someone will answer, someone will guide you, and that heavy load in you will start to lighten. The tunnel can seem a bit long at times, but it is absolutely imperative to remember that there is always a bright, LED light shining at the end.