What I Wish Doctors Told Me About Chronic Illness

I was lying on the exam table at my primary care doctor’s office.

“Yup, you are definitely bloated,” said my doctor. After a brief abdominal exam, I was instructed to take Zantac and go on a bland diet.

The next thing I remember was rushing myself to urgent care. In the span of a week, my acid reflux had become so severe that I couldn’t even take down water. I became extremely dizzy and nauseous from dehydration. I knew I couldn’t go to sleep like this — otherwise I may not wake up.

At urgent care, I was advised to dilute 50% Gatorade with 50% water and freeze it into ice cubes so I can at least suck the moisture down to keep myself hydrated.

The next morning, I desperately went down the list of gastroenterologists on Zocdoc and called each office trying to get an appointment on the same day. After calling three offices and hearing no availabilities, I began to panic.

When the fourth place said there is one appointment slot, I immediately rushed there. Having had only tiny amount of oatmeal and bananas for the entire week, I was extremely weak, shaky and barely able to speak.

Luckily, I was seen by a very compassionate doctor whose calming voice made me feel like there may be hope. He fast tracked me into the procedure room to do an upper endoscopy the following day.

I was diagnosed with chronic gastritis and prescribed 8 weeks of Omeprazole.

The next few weeks consist of numerous tests to eliminate other possibilities, agonizing symptoms and the slow realization that my newfound illness may not completely heal after 8 weeks — or ever.

Fast forward 3 months, I have come a long way since my digestive system suddenly collapsed. I am finally able to eat select varieties of food without too much discomfort, but my stomach never feel the same again, and I have learned to accept that it may never will.

My stomach never feel the same again, and I have learned to accept that it may never will.

Just when I thought the ordeal is coming to an end, I received another diagnosis — sciatica, after seeing a pain specialist for my worsening back and knee pain. Battling not one, but two debilitating chronic illnesses and pain along with other pre-existing conditions, I learned a few lessons the hard way.

You Need to Become An Expert at Your Illness

Doctors can only help us so much. Even the best of them, who are excellent at their jobs with outstanding bedside manner, cannot be there with us 24/7. The most important part they play in our journey is giving us the correct diagnosis. Despite having the most amazing doctor, I realized I had to look up everything there is to know about gastritis.

There is a lot of contradictory information online that confuses us. One article tells us to eat something while another one says to avoid it like the plaque. Even different doctors will tell you to do different things. At the end of the day, we have to realize our bodies are all different. What works for others may not work for us.

“You know best,” said my gastroenterologist. And after 3 months, I finally came to understand how to put this into practice.

You Have to Test Your Body Like A Lab Rat

One of the scariest things about managing chronic illness is that you won’t know what works for you until you’ve tried it.One day I was eating all kinds of food like a normal person, the next day I had to eliminate 90% of food from my diet.

After the initial treatment improved my acute symptoms, I started the long and ongoing journey to reintroduce food one by one into my system.

The only thing is, there is no guidebook to follow. There are general rules to follow — no tomato (RIP my love of Italian food), no spicy food, no broccoli, no chocolate, no coffee, alcohol or carbonated drinks. But what about other food? Can I eat X, Y or Z? I had to read up and test them out one by one on my body like a lab rat.

Through trial and error, I discovered that my stomach no longer tolerates a lot of food, including the ones that are considered healthy for the general public. Sweet potato, white potato, mushrooms, most fruits, corn… the list goes on. It took me a while to accept the fact that my stomach now has limited ability to digest food and I have to embrace a restricted diet until further notice from “Her Majesty”, a nickname I coined for my hyper-sensitive digestive system.

Your Chronic Illness May Have Been There For Ages

A question that we, the chronically ill, often ask is — “When and how did this happen?” There is certainly no easy answer, but there’s a good chance that it may have been there for a long time before symptoms even start appearing.

In my case, I was completely taken by surprise.

Even though I didn’t go on a juice cleanse every month or go to yoga classes every week, I’ve always considered myself living a healthy lifestyle. I ate plenty of vegetables and fruits regularly. I rarely eat food that’s high in fat or sugar. I haven’t had a drink in over 3 years and not a drip of coffee in 5 years. I’ve never smoked or done any kind of drugs. I sleep an average of 7–8 hours a day. I walk 45 minutes to an hour a day. What more does “Her Majesty” want?

However, this painful illness taught me a hard lesson — we may be doing things that are sabotaging our bodies without even knowing.

I was eating spicy food on a regular basis. I ate way too much food on many occasions. Like a typical New Yorker, I ate way too fast without proper chewing. I was constantly stressed. I drank cold beverages that my stomach cannot handle.

In other words, I may have secretly destroyed my gut without realizing it.

There Is No Such Thing As “Feel Better Soon”

I once read a quote that goes along the lines of this:

“There is a general lack of conversation between the common cold and terminal cancer.”

I couldn’t agree more. “Feel better soon” doesn’t apply to those of us who are chronically ill. If you are new to chronic illness, adjusting the expectation of your body’s ability to heal may be one of the most difficult tasks. When your friends expect you to “get better already”, it’s frustrating to explain why your body is different from theirs.

Understanding and accepting that our illness may always be there is the first step to “healing”. As for your friends’ astonishment that you are still “under the weather”, maybe this will do the trick:

Image for post

The Path to Healing is Not Linear

Being chronically ill means that our answers to people’s well-meaning check-ins, such as “How are you feeling?”, will most likely be fake.

Unlike the common cold or short-term illnesses, our illnesses do not improve on a linear trajectory over time. Some days are better than others, but regression can happen at any time.

I’m still learning to embrace the curve path to managing chronic illness. As a Type A person, I am easily disappointed when things don’t work out, especially after putting in so much work.

However, it reminds me of my path to healing from a painful relationship a few years back. I would be in a deeply depressive mood for several days in a row and then went about fine for the rest of the week, only to repeat the cycle months over months, until one day, I no longer felt the pain because I have finally outgrown it.

The tricky thing about chronic illness and pain is that we may never outgrow it like heartbreaks.

Time does not always heal, but we can manage and live with it.

Your Illness Will Turn Your Life Upside Down

There are only a select few moments when my life changed overnight.

The very first one happened when I was 17. I had just received a full-scholarship to attend college in the US. The second one was last year, when I received approval of the US green card with the EB1 extraordinary ability visa.

The latest one is the multiple onsets of chronic illnesses this summer. In the matter of a few days, I bid farewell permanently to most food that people normally consume and lost my ability to walk freely without pain.

I no longer have the option to “go out and have fun”. The bulk of my day is now spent getting through pain and discomfort, carefully preparing 3 meals a day and trying my best to still do some work.

As someone in my late 20s, this is a hard pill to swallow. In fact, my sciatic pain had become so severe recently that I had to request to work from home for a few months to minimize further injury.

Up until this summer, I was still going on dates. Guess how my dating life changed since I got sick? It went away completely. The last date I went on was in the middle of my gastritis flareup. Needless to say, the conversation revolved around my illness most of the time because that’s all I could remember from the last few months. No matter how compassionate your date might be, sick talk is not sexy.

If you are in a relationship, your chronic illness can put burden on your partner because they are suddenly confronted with the responsibility to care for you. It is indeed a test to the strength of your relationship. The bright side is, you will find out whether your partner really sticks by your side “in sickness and in health.”

Managing Multiple Chronic Illnesses Is a Full-Time Job

As a child-free single person living in a major metropolitan area with lots of conveniences, I consider myself lucky especially after becoming sick. With pain, fatigue and mental stress from the illness, along with nonstop research finding home remedies and hundreds of dollars spent on purchasing alternative medication, exercise equipment and healing food, I can’t imagine having childcare or elderly care responsibilities.

But many others are not in my situation. They have to care for others in addition to caring for themselves. They have work. They live in poverty. They don’t have insurance.

Managing chronic illness is a full-time job. It’s more stressful and we don’t have the option to quit or take a cheat day.

Sometimes I wonder, will better days come? I don’t exactly know the answer, but my heart says yes even though my brain is too tired to figure out the rationale.

Being Open About Your Illness Can Save You

I hid my stomach illness from my family for two long months. In between that time, I was suffering alone and in silence. I went under for upper endoscopy for the first time without anyone accompanying me. Then it came time for my mother to travel with me in California — a trip we had scheduled earlier this year.

I broke the news to her as soon as I picked her up from LAX. I realized there is no other way to explain why I can’t eat most food when we dine at restaurants together. She was shocked, disappointed and sad that I chose to hide such important information from her.

I explained to her that I thought I would be better by the time I see her and how I didn’t want her insomnia to get worse worrying about me.

It turns out I was being foolish. I was fully aware that my mother has the exact same stomach illness as I do and I could have benefited from her advice, but somehow my “independence” got the better of me.

As an only child, I have always done everything by myself. I found my way to America by myself. I bought my own home by myself. I got every opportunity by myself. Naturally, I thought I could fight the illness by myself.

But this time, I learned that it’s better to fight as a team with whoever is closest to us. After my mother became aware of my illness, she has been a tremendous help. I used to ignore health articles she sent over to me because I was “too busy” to read. Now I save them in a folder and actually start trying things out.

Being open about your chronic illness takes courage, but it can save you from making mistakes and suffering more. If your illness will affect your work, it’s even more important to disclose it to your boss and/or colleagues.

I hope to share this with anyone who is coming to terms with their chronic illness. Since my illness is ongoing, I may learn new things that warrant another article. Until then, stay tuned and be well!

Stay Updated On Stella's Latest Articles

Stella is not a wordy person and feels very strongly about spams

You Might Also Be Interested In

Scroll to Top