And so, on the cusp of my teenage years, I was ushered into a new reality
My hands trembled as I dialed my friend Mirel’s number. Mirel and I had been close friends since childhood, and all the years I had keeping part of my life a secret from her. Now, after 20 years, I had decided it was time for a disclosure.
Although I knew this was the right thing to do and had practiced my little speech dozens of times, I was still terrified. How would Mirel react? Would she be hurt? Betrayed? Angry? Would she pity me? Would she think there’s something seriously wrong with me?
“Hello, Mirel?” I said, my heart pounding, my voice shaky. “It’s Batya. There- there’s something I need to tell you.”
Around the time of my bas mitzvah, I began experiencing some odd but mild digestive symptoms. Suspecting a parasitic infection, my doctor first referred me to an infectious disease specialist, who later recommended that I see a gastroenterologist. After undergoing a colonoscopy, I was diagnosed with colitis, a chronic inflammation of the colon.
Although my symptoms then were hardly disturbing to my life, the gastroenterologist prescribed a mild, long-term medication for me. This, he said, would keep the inflammation under control and prevent acute attacks, which could seriously interfere with my quality of life.
And so, on the cusp of my teenage years, I was ushered into a new reality, one in which I was officially struggling from a chronic illness.
I had never heard of colitis before, and I certainly didn’t know anyone with the disease. My parents felt that it was better to keep my condition private, and they never even told my siblings about my diagnosis. They did not explicitly caution me not to tell my friends about it, but I understood that colitis wasn’t something to be discussed when not absolutely necessary. Besides, the symptoms can be embarrassing to explain. And I did not want to be pitied or thought of as a nebach.
For most of my teenage years, I experienced no serious symptoms, as the medication worked well. I did have some flare-ups, during which I suffered from the symptoms of upset stomach that are typical of colitis, but with time we realized that these flare-ups were being caused by C. diff infections. (C. diff – short for Clostridium difficile – is a bacterial infection in the gut that causes stomach pain, severe diarrhea, weight loss, and blood in the stool.) Once we knew what was causing the flare-ups, the infections were treated with antibiotics, and the symptoms would subside.
When I got married, at the age of 20, I was completely symptom-free, and when I told Yitzchak, my chassan, about my condition before we got engaged – stressing that it was not affecting my life at all – his reaction was a pareve, “Oh, okay.”
It was after the birth of my first child that I suffered my first severe colitis flare-up. It started with me contracting C. diff multiple times in a short period, and these infections completely sapped me of my strength.
I lost quite a bit of weight and felt very weak and dizzy much of the time. Sometimes, I barely had the strength to lift my infant son. Being the soldier that I am, I kept marching on, focusing on putting one foot in front of the other. My house functioned – there was always food and clean laundry – and I managed to keep a smile on my face most of the time. But it certainly wasn’t easy.
When my son was 18 months old, and I was still weak and suffering from colitis symptoms, my doctor recommended that I try a biologic medication that is administered by injection. This course of treatment was a departure from the oral medications I had been on previously, and a signal that my condition was transitioning from “mild” to “moderate to severe.” Since then, I’ve been on four different biologic medications, with varying levels of efficacy.
Over the years I have also tried various alternative healing modalities, including diets, vitamins, chiropractors, emotional healing, and more, with limited success.
I would describe myself right now as being “stable sick,” which means I don’t have serious symptoms most of the time, but I also can’t forget that I have colitis. In a typical week, I’ll have one acute attack, which has me suffering from pain and urgency for about an hour or two, and the rest of the week I’ll suffer, on and off, from mild pain; I’ve become so used to that discomfort that I hardly pay attention to it anymore.
From the time I was married and working, I gradually started to tell new acquaintances about my condition. When I signed up for a parenting course, for instance, I told the “chavrusa” assigned to me that I had colitis, and that disclosure didn’t feel like a big deal. What I couldn’t bring myself to do was talk to the people close to me – my siblings, siblings-in-law, close friends, and old neighbors – about it. After knowing me well for years, how would they feel if they found out that I had been keeping such a major part of my life a secret from them for so long?
And so, I did my best to hide my condition from them. Most of the time, since my symptoms were not very severe, it wasn’t that hard to avoid talking about it. When I was more symptomatic, such as when I had the C. diff infections, I would tell these people, “Yeah, I’m not feeling so well.”
Overall, I pushed myself to function normally. In my work as a special educator, I rarely took off, even on days when I felt really lousy in the morning. Like many people with colitis, I felt worst in the morning. During a flare-up, my morning routine was: wake up, go to the bathroom, get dressed, go to the bathroom, dress the kids, go the bathroom, prepare breakfast, go to the bathroom… and so on.
I found that if I managed to muscle through the morning and get myself to work, my stomach would settle down and I could usually enjoy a symptom-free day. I acted as my own cheerleader, telling myself that even if the morning had been rough, that didn’t mean I couldn’t have a very good rest of the day.
At home, I cooked, cleaned, and did laundry, and took my three kids to the park, read them books, and played games with them. My one concession to my condition was that I often napped in the afternoon, while my husband watched the kids.
Any time we had a family get-together, I would show up smiling and laughing, and I would have a great time. At times my face would be thinner – if I had lost weight during a flare-up, for instance – and at times it would be puffier, such as when I was on prednisone (a steroid) to control the inflammation, but overall I looked good enough that my appearance wasn’t shocking, and these fluctuations could be ignored. My family and friends respected my privacy enough not to say anything even when they surely realized that something was wrong, and I, feeling that it would be awkward to share details of my condition after so many years of keeping it a secret, never mentioned anything about it.
In general, I didn’t even view colitis as something I was struggling with. It was something I managed – I went to the doctor, I took my medications, I gritted my teeth through the flare-ups – but overall, it didn’t affect my life.
Something interesting happened to me a couple of years ago, however, when I signed up for a teleconference course in maximizing your inner potential. When the life coach who gave the course began talking about emotions, I found that I couldn’t remember feeling many of the negative emotions that we learned about: anger, jealousy, fear, and so on.
When I brought this up to the life coach in a private call, she was intrigued, and began asking me questions about my life. I found myself telling her that I had colitis, and describing how self-conscious I was about it, especially around people who knew me well but didn’t know I was suffering from it. To my surprise, tears sprang to my eyes as I spoke, and my voice quavered.
“So you do have negative emotions!” she exclaimed. “You’re just not acknowledging them!”
I hung up the phone feeling confused and overwhelmed. Was I really denying my emotions?
My mind traveled back to my teenage years, when, during a flare-up or after a doctor visit, I would closet myself in my room and cry, sometimes for hours. My parents sensed my anguish, but they respected my desire to be alone while my tantrum ran its course.
These meltdowns, I had to admit, were hardly a thing of the past. For instance, it happened numerous times that I went for a colonoscopy as an adult and then heard the doctor say, “I’m sorry to tell you this, but there’s still a lot of inflammation. The medicine is not working well.” At times like those, I would be close to tears for the rest of the day. In the evening, when the kids were asleep, my husband was out davening, and the house was quiet, I would dissolve, unwillingly, into choking sobs, as my mind railed about how it’s just not fair and I wish this would go away.
Eventually, I would regain my composure, and by the next morning I would be back to my smiling self. My husband had no idea how to respond to my crying spells, and since all I wanted was to be left alone, I didn’t open up to him, or to anyone else, about what I was feeling. The last thing I wanted was for anyone to see me in that vulnerable state — and the main thing I wanted, after the storm subsided, was to get on with life and pretend I had never succumbed to that emotional weakness.
My mother, who was basically the only person I had spoken to about my condition before I was married, had been a continual source of encouragement to me when I was growing up. “Don’t worry,” she would assure me. “It’s going to get better.” Invariably, she was right. With her upbeat, forward-looking attitude, she taught me to keep marching on and coping with whatever curveballs life deals me. This attitude has enabled me to keep showing up every day, through the highs and lows of my journey with colitis.
Yet after that conversation with the life coach, I started to realize that in the process of putting on a brave face for the world while hiding my difficulties, I had gotten used to ignoring my own emotions and focusing exclusively on what I had to do. Instead of admitting — to myself, and to those around me — that I was feeling physically or emotionally weak, I would simply forge ahead, consistently pushing myself beyond my limits to prove that I was just as capable as anyone else.
During my next conversation with the life coach, I asked her how to cope with the crying spells in a healthier way, and she recommended that I get into the habit of journaling about how I’m feeling, with no judgment, censorship, or restraint. “Just let the words flow,” she urged me. With time, I came to love journaling, and whenever I would start feeling flooded with emotions, I would run to get my trusty notebook and pour my thoughts onto paper.
In the process of sharing my inner world with my journal, I slowly became aware that there is an emotional side of me that needs attention – not all the time, but certainly sometimes. Emotions are real, I learned, and they matter. If I chose to ignore them, they would ultimately engulf me and emerge in ways that are unhealthy and turbulent. But if I chose to acknowledge them, feel them, and accept them, they would come and go uneventfully, like the calm waves of a tranquil sea.
Journaling was not enough, however. Liberating as it was to share my inner world with a notebook, I realized that sometimes, feelings need to be shared with people.
Looking back, I could see what an emotional burden it had been on me to carry the weight of my condition all alone. I remembered sitting at a Chanukah chagigah once in high school. My stomach was hurting, and I was feeling dizzy from being anemic, due to the colitis. Looking around at the laughing, carefree girls around me, I felt so alone and distant from them. They wouldn’t even know what a colon was, never mind a colonoscopy!
That feeling of aloneness had persisted all my life.
Why am I still keeping this a secret? I wondered. Would it be so bad if I would tell people what I’m struggling with, so they could understand and maybe give me some slack?
I realized then that only by banishing the secrecy that shrouded my condition could I hope to achieve inner peace. I decided, therefore, to share the details of my condition with the people closest to me.
One of the first people I divulged the secret to was my younger brother. He was very grateful to me for sharing this information, and he told me that when he had been learning in Eretz Yisrael as a bochur, he had suspected that something serious was going on because he suddenly couldn’t reach my parents at home, and each time he called my mother on her cell phone, she spoke in a hushed voice, as though she was in the hospital. She actually was in the hospital with me at that point, but she never told my brother, who felt unsettled and fearful as a result.
Another person I called was Mirel, a childhood friend of mine who has experienced a host of serious challenges in her life, including the loss of a parent at a young age. I was terrified that she’d be hurt by the revelation, but to my surprise she actually embraced it. “Oh, Batya,” she exclaimed, “I always thought you had this perfect, problem-free life! You’ve supported me through so many of my own struggles, and you have no idea how much I appreciate hearing about your own struggle.”
Later, she told me that knowing about my condition enabled her to better accept the support I had to offer.
In the past, I had never bought up the topic of my condition with my mother-in-law or my husband’s siblings. Now, I started sharing with them, too, the details of what I was going through.
To my surprise and relief, most people I told about my colitis reacted with only moderate interest and concern, asking a few questions and then eventually letting the conversation veer off onto different subjects, such as what was going on in their lives.
When a secret festers in your head for so long, it takes on bloated significance. That’s why, when I finally disclosed my condition to my family members and friends, I was sure I was telling them earth-shattering news. Eventually, I realized that my secret was a lot bigger to me than it was to anyone else. What my friend was making for supper was a much more pressing concern to her than my ongoing struggle with colitis – not because she was selfish or uncaring, but because that was her issue, and this was mine.
Once I realized how little people were actually thinking and wondering about my condition, I found myself stopping to care what others thought about me. And, then, to my surprise, I realized something else: The reason I had worried about people pitying me or thinking there’s something wrong with me was that I myself had believed I should be pitied!
The recognition that I was projecting my own insecurity onto others spurred me to make a concerted effort to eschew all secrecy about my condition. No longer would I live in fear of what people would think of me if they knew I had a chronic illness. No longer would I need to hide my medical condition in order to feel normal.
One afternoon, I was scheduled to receive an IV infusion of my medication, which would be administered at home by a visiting nurse. It was a beautiful, sunny day, and I felt bad to keep my kids cooped up inside for the two hours when I would be receiving my infusion, so when the nurse arrived I informed her that today we’d be doing the infusion on my back porch.
I prepared bubbles and snacks for the kids, and they played outside the house while I was hooked up to IV. The IV line was hardly visible, but I would have been more than happy to explain to any curious neighbors what was going on. As it turned out, no one noticed what I was doing, so I didn’t even have to explain anything, but the experience of handling my condition in a pragmatic, unguarded way was incredibly liberating.
My parents were very apprehensive when I began spilling my long-kept secret indiscriminately. They were concerned that I would suffer in ways I didn’t anticipate, and they urged me to think of my children’s shidduchim, even though they’re still young. “Colitis is a significant issue,” my mother cautioned me. “Are you sure you want this to be public knowledge?”
I explained to them that as long as I had been keeping my condition a secret, I had been in complete denial of the way it was affecting me. “On the outside, I always gave a confident, happy-go-lucky impression,” I said, “but now I realize what a high price I paid for maintaining that façade – I couldn’t get any support!”
For a while, I was talking about my condition to everyone. When people would casually ask me how I was doing, I would give them an honest report about how I was feeling and tell them the latest news from my doctor. I was probably oversharing at that stage, but eventually I reached a balance in which I would share more selectively, only with people who were close to me and only at times when I felt it would be helpful for me or the other person.
One day, a friend of mine, whom I met through an organization that supports frum girls with chronic conditions, called me up in tears, and told me what a hard day she was having. In the past, I would have listened sympathetically, but in the back of my mind I would have viewed her outburst as a sign of weakness or neediness. I simply couldn’t relate to these dramatic displays of emotion. Now, as I clucked my tongue in genuine sympathy, I thought to myself, This is amazing! Next time I’m in tears and falling apart, I’m going to give her a call and unload!
So accustomed was I to isolating myself when I was feeling miserable that I had to muster a whole lot of courage to pick up the phone and reach out to this friend the next time I was holed up in my bedroom crying after yet another disappointing medical appointment. But she was so supportive, and so happy to reciprocate the favor, that I felt no embarrassment whatsoever when I cried to her about how unfair it all was, and how I just wanted to feel good for a change and not have to take medications and run to doctors my whole life. In subsequent “venting” calls to her, when my tears overwhelmed me to the point that I could barely speak, she made up rhymes about how upset I must be and sang songs about how everything would be okay. These often made me smile, or even laugh, through my tears.
About three years ago, for the first time, I attended an event for frum people with Crohn’s disease or colitis. Looking around, I wondered to myself, How can it be that these people all have my diagnosis? They look so normal! And then I thought to myself, Hey, I must be normal, too!
Interestingly, once I came to view myself as a regular person and my condition as a simple fact of life, the intense crying spells stopped completely. I do still cry about my illness on occasion, but it’s with a certain peacefulness and acceptance, not with the intensity of despair and rage that characterized my earlier, explosive outbursts. When a wave of sadness, or fear, or disappointment, or frustration comes over me, I sit down and journal, or I call up a good friend, and if the tears come, I just let them fall freely.
“It’s not fair” is no longer part of my emotional lexicon, as I’ve made peace with the fact that this is the life Hashem has chosen for me, colitis and all. I know, now, that it’s okay for me to let certain tasks slide and not do “what everyone else does” all the time. I’m allowed to not feel good and to ease up on my responsibilities in deference to my condition, even as I refuse to use that condition as an excuse for not living the life I want to live and accomplishing the things I want to do.
The narrator may be reached through LifeLines or the Mishpacha office.
(Originally featured in Mishpacha, Issue 814)
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