Marie’s Chronic Illness Journey: Finding My “New Normal”

Marie’s Chronic Illness Journey: IBD and Crohn's disease

IBD, Perianal Crohn’s Disease, Abscess, Fistula complications, Sepsis, Crohn’s Arthritis, Pyoderma Gangrenous, DVT, blood clotting disorder, low blood pressure, Tachycardia and an irregular heartbeat with palpitations, Migraines, Body Dysmorphia, Depression, Anxiety, Agoraphobia, PTSD, hair loss, insomnia, self-isolation.

No, you didn’t just read a list of side effects from a newly FDA approved medicine. What you did read are just some of the things I have to battle with and continue to overcome daily. It’s unfortunate, but I can continue on with that list for quite a while. Being diagnosed with a chronic illness at 27 is utterly perplexing, as I am sure it is at any age. You live this life and you have your plans, goals, aspirations, and, at the flip of a switch, that all changes. I was completely blindsided and continue to be with every new diagnosis.

Finding my “new normal”

Once I was diagnosed, I would hear from other IBD patients and medical professionals about the importance of finding your “new normal”; a phrase I found to be so true and necessary, as I myself was discovering what that would mean for me. My struggle came into play when I realized no one around me seemed all that open about the process that preceded this new life I would be creating for myself. With the daily challenges associated with chronic illness, figuring out how this new life looks can feel as if you’re driving at night in a rainstorm, with your headlights off, just praying you’re on the right side of the road.

I had never really been exposed to the chronic illness lifestyle. Even though it has now been 2 years, the chronic part is still something I struggle with regularly. It’s easy to forget that this illness is for life. It definitely doesn’t help when the “able” ask you if you’re better yet. Especially, when after every procedure, that thought passes through your own mind, only to disappoint you again because you know that “better” will never be a permanent option.

I was beyond lost at the beginning of my chronic illness journey. I was scared and I felt alone. I was the only one in my world who could speak my language and everyone was staring at me like I was a circus clown. As if the chronic pain wasn’t enough, I was now facing emotional turmoil as friends, who I considered family, began to drop out of my life. I was left to fend for myself the same instant everything I knew changed; with only a few true friends remaining by my side to help navigate the most difficult challenges I’ve ever faced. True colors began to shine in moments of crisis and I was seeing rainbows.

Highly medicated and awkwardly positioned in my hospital bed, I felt as if I was being tested. I can only describe my time in my post-op, shared-room as a character-building experience. I squinted one eye shut to combat the drug-induced, kaleidoscope vision so I could begin to research how to achieve this “new normal”.

Finding support

I stumbled across the Crohn’s and Colitis Foundation and sent them an email. Once discharged from the hospital and successfully escaping the grips of my home nurse, I managed to make it out to a few events. I started meeting people, people like me, only they were more informed and experienced with their place in their chronic illness journey. It was through these gatherings that I became connected with my mentor, who now is my closest and dearest friend.

We began going to support groups together and she got me to see a psychologist who specialized in IBD. I had a connection with my mentor-turned-best-friend that I’ve never experienced before. I wasn’t aware that relationships like that were real. I finally wasn’t alone on my planet where no one could figure out what I was saying. I was the least lonely I had ever been, and we were in our very own world where we finished each other’s sentences, showed up for surgeries, and answered the phone late at night just because the other couldn’t sleep. We support each other in every aspect of our lives and I slowly began to realize the steps needed to be taken to get to my “new normal”.

It was through our relationship and her perpetual support that she encouraged me to stop hiding behind my fears and do what I love. Out of this came The Lemon Blog, my passion project. The Lemon Blog is a place that supports all abilities and provides encouragement, mentorship, community, advice, an ear to listen, or even a shoulder to cry on when needed.

Starting a blog when coping with IBD and Crohn's disease

I cannot stress enough the importance of having a solid support system. Sadly, not everyone has that available to them, which is why The Lemon Blog has become so important to me. Not only have I made amazing connections with these warriors, but we check on each other regularly, we cheer each other on, offer support when needed, words of encouragement when down, and have some pretty good laughs along the way.

People like Meena at The Unchargables help pave the way for the rest of us and I am honored to be writing this for their site. Thank you for asking me to share my story. I encourage everyone to share their own; you never know who it may help. I’d love to see you over at thelemonblog.com or shoot me a direct message through our Instagram @the.lemon.blog – we’d love to have you be a part of our Spoonie Community and help you to discover you own New Normal.

About the Author:

Marie is a chronic illness warrior who runs The Lemon Blog, which is her passion project. Marie created this blog with the aim of supporting fellow chronic warriors and helping them find their own “new normal”.

April 8, 2019June 21, 2019

The Myth of Mianzi: Why Chinese Americans With IBD May Be Struggling With Mental Health

Mental Health is a huge struggle for many living with chronic illness, but there is a particular struggle for Chinese Americans because of custom of Mianzi.

Cultural Norms

According to the University of Manitoba, Inflammatory Bowel Disease (IBD) treatment often results in a deterioration of the patient’s mental health. Patients face treatment-related body changes and the psychiatric side effects of corticosteroids, among other complications. But articles like these do not consider what happens beyond the pillbox. What are the norms of my culture? How do they impact my mental health? How does bullying affect me?

According to the Center for Disease Control, only 3.1% of non-Hispanic Asians were clinically depressed, approximately two times less than non-Hispanic whites (7.9%). The gaping disparity is unsettling. Here’s why.

Low access to mental health resources in Asian American communities leaves mental illnesses undiagnosed. So many go through life without being treated for Depression. Asian American culture can explain the low levels of access. The cultural stigma associated with depression discourages us from seeking help. Asian Americans with IBD live at a difficult crossroad of IBD and stigmatized mental health. Some common examples of mental health jokes/remarks in the Asian American community:

“Ooooh I’m depressed! I need an asylum! Oh no!”

“That person basically is bipolar.”

“Charge me a group rate for this therapy session! I have multiple personalities!”

“Why you retarded? You depressed? Stop being depressed!”

The list goes on.

These comments that I heard in the Asian American community created an environment hostile to neurodiversity. Moreover, they stigmatize mental health, making diseases like Depression unacceptable. While the mockery tends to be directed to a general crowd, it isolates those who struggle with mental health. As someone whose IBD affected their mental health, these comments keep everyone unaware of mental health concerns that plague people.

Mianzi, or Saving Face

Immature jokes are not the only cause. The mental health stigma also stems from mianzi, a concept that originates from Chinese culture and means “saving face.” Mocking mental illness prioritizes pretence over honesty, creating more pain for those who suffer. In fact, pretending became a survival mechanism in order to avoid bullying.

For example, I refused to tell anyone about potential mental health concerns right after my diagnosis for the fear of becoming a social outcast. My emotions piled on top of each other, threatening to explode at any moment. Silence was already the norm in my Asian American community no matter how detrimental it might be. Unfortunately, social survival comes at the expense of perpetuating the stigma. The more we keep silent, the more the ignorance around mental health will linger. No one would ever be aware of any struggles that Asian Americans with mental health challenges would face.

“Saving face” also created a false sense of pride: I was somehow better than others who were honest about their mental health. My ego overtook the reality that seeking help was necessary. Outside, I fantasized of a world in which I was “normal.” Keeping silent also harmed my mental health. I appear strong, but I am actually weak. I seem fine, but I really am not. Hence, tensions between facade and reality begin to grow, creating knots of anxiety in my stomach. Each question I asked added one more insecurity. How much longer must I keep this up? How do I keep this up? Where was this shame coming from?

Mental health, IBD and Asian American identity

Because I have diarrhea from my IBD, I was allowed to go to the bathroom without permission. Unfortunately, others did not understand. One day, I walked out of the bathroom, and a boy confronted me: “Why are you going to the bathroom so frequently? Get out of there and actually start asking before you go.” Others chimed in on his criticism, and my cheeks turned scarlet red. Disregarding these comments was the best I could do fulfil mianzi. Unfortunately, I became more and more angry but did not know the cause.

The more I was bullied, the more my mental health deteriorated. At first, I saw it as a just punishment for being sick, so I told no one. Emotions began curling up like snakes inside me, eating away at me inside. As a result, I became furious at random things. Projection was the only solution, which established a vicious cycle. Mianzi ravaged my mental health, which fed into my IBD, which fed into mianzi. And the cycle kept going. Within this cycle, I kept denying that there was any linkage between the three for years; it was too much for my brain to handle.

Mianzi prevented me from seeing that my able-bodied, healthy classmates should not bully me for my IBD. I began to blame the disease and my doctor for making me fat and ugly. Standards of Asian America perpetuated my silence. It was better to look fine than to feel good. Apparently, the rules of mental health operate differently from mianzi.

Collin Wong is an Inflammatory Bowel Disease blogger and advocate on Collin’s IBD Chronicles. In the thick of the college application process, he decided to start a blog after realizing the lack of Asian Americans in disease blogging. He was diagnosed with Crohn’s Disease in 2006, and he started this blog as a way to give an Asian American perspective on IBD. Outside of blogging, he is a full time student who aspires to be a doctor one day.

April 19, 2018April 19, 2018

How Marya Found Grace Through Chronic Illness

I’ve been diagnosed with cervical dystonia, a neurological movement disorder, since 2010. As an extremely disabling condition with sometimes relentless chronic pain, it’s had a tremendous impact on just about every area of my life including limiting my driving abilities, my capacity to work and to be able to take my son with special needs, to some of the extracurricular things I’d like to see him be able to participate in.

“As an extremely disabling condition with sometimes relentless chronic pain, it’s had a tremendous impact on just about every area of my life.”

I’ve been diagnosed with Irritable Bowel Syndrome for years and figured that every quirky GI symptom I’ve had was just the IBS acting up. But for the past few months the more distressing symptoms were intensifying and I was noting more blood in the toilet when I went to the bathroom.

As a special needs mom of three, one of whom is a heart patient, I’m pretty good at doing research. So naturally, I started Googling “Inflammatory Bowel Disease” and started to wonder if that was what was going on and scaring the daylights out of myself in the process.

Finally, I went to the gastro in January, who ordered a colonoscopy. I procrastinated about getting that procedure done for a few months and finally got that done in April of this year.

Well.

For some reason the prep didn’t seem to be going as well as previous times. When I came out of the procedure, the doctor told me that the prep was indeed poor, and that I had colitis but they’d have to do biopsies in order to confirm what type it was. The doctor didn’t think anything major like cancer was going on.

Afterwards we stopped for breakfast at one of our favorite places just like we’d done in the past. I ordered some food, but then I began feeling horribly nauseous and couldn’t eat. The nausea became overwhelming and then I lost consciousness in the restaurant in front of my husband. A retired law enforcement officer, he started trying to give me mouth to mouth right away. Luckily there were some medical personnel from the local hospital there too and they called an ambulance.

“I lost consciousness in the restaurant in front of my husband […] he started trying to give me mouth to mouth right away.”

I spent several hours on ER having vitals checked as well as an EKG. I was super nauseous for several hours and couldn’t go to the bathroom by myself for awhile. My vitals all checked out as normal, but every time I tried to stand up the nausea came back. They gave me some meds or that and when it finally seemed to be under control, I went home to rest.

The doctor told me that it didn’t matter what I ate, but again… special needs mom that I am, I question standard medical advice. Also, I’m pretty holistically-minded about everything. I knew about the Gaps diet and was able to source a few things immediately. Something about being told my colon was “oozing” was very motivating to get started right away!

I’ve already begun to see some slow improvement but I understand that this is a major lifestyle change. I’d already made lots of changes over the last couple of years including a 40 pound weight loss and a food plan that was comfortable for me. But now I’m having to make more changes. I miss my morning oatmeal, coffee, and other creature comforts that help to keep me sane.

“30+ years of sobriety, being a special needs mom and living with another chronic illness have helped me to develop a self care arsenal that keeps me grounded through anything that life throws at me.”

Checking in with my mindset about everything, although I complain about the food restrictions on the Gaps diet, I think I’ve handled it all relatively well. 30+ years of sobriety, being a special needs mom and living with another chronic illness have helped me to develop a self care arsenal that keeps me grounded through anything that life throws at me. For me this looks like daily devotions, meditation, yoga, and writing. A little dark humor and sarcasm goes a long way too. Unfortunately that list also used to include a good cup of coffee, but I guess that’s out for now until I’m more stable.

I’ve learned that my life’s journey is a marathon, not a sprint. Sometimes there’s going to be awful days. Situations that I’m totally powerless over. At times like these it’s perfectly okay to lay low and focus on what I need to.

At this point I haven’t had the follow up with the doctor or got the lab results back. Honestly, I am a little anxious about it after doing some research and seeing the the possible treatment options are, how invasive they might be, how much is this going to cost and how cooperative will my insurance company be?

“I’m being proactive about what I have to do, taking it one day at a time and giving myself lots of grace to get through this.”

But believe it or not, it isn’t consuming me like it might have at one time. I stay busy with my blog, my dogs and my self-care practices in order to stay grounded. I’m being proactive about what I have to do, taking it one day at a time and giving myself lots of grace to get through this.

Marya Mesa is a special needs mother who writes at www.ChronicMomLife.com about chronically sober living with faith, intention, & self care.