Two women share a secret. In black and white.

My Friend Betrayed My Trust and It Helped Me Accept My Disease

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My freshman year of college, I had a new friend I thought I could trust with anything. Although I was a very private person, I decided to reciprocate her honesty and share what was then my big secret: I have Crohn’s disease.

At this point in my life, I struggled to open up about my health because I was not yet comfortable and accepting of the idea that there was something so majorly “wrong” with me. The only people in my life who knew about my disease were my family members. Sure, my peers speculated as to why I missed so many days of my senior year of high school, but back then I never directly told anyone about my medical condition unless I absolutely had to.

When I came to college, I immediately felt like an outsider. I had a medical single room because with a suppressed immune system and my Crohn’s symptoms I could not handle living with a direct roommate. I tried to be social, but I soon realized that socializing at my school equated to partying, which I never have been a huge fan of. When I finally met a few girls I clicked with, I deemed it necessary to try my hardest to maintain those friendships, which meant I needed to be less secretive.

I have always been a listener. I am the friend you can come to with your problems and I will sit for hours as you endlessly talk about your life. I prefer this instead of talking about myself, mostly because I like helping others, but also because I have been burned so deeply in the past by friends who defied my trust.

I felt relieved the first time I opened up to my new college friend about my big secret. She was understanding and curious, and I truly enjoyed answering her questions because I got the sense that she actually cared about me. It dawned on me that maybe telling more people about this significant aspect of my life wasn’t such a bad idea after all.

Weeks passed since that revealing conversation, and our friendship did not change. I was thrilled that I was being accepted for who I was and that she still wanted to be my friend despite my health limitations. I could now be more honest with her about why I couldn’t hang out some days or eat certain foods. I realized I was too critical of myself before; having a disease doesn’t make me any less of a person or friend.

I soon realized, however, that maybe my friend didn’t realize how big a deal it was that I had confided in her with something so personal. One day I was studying alone in my room and overheard her in the next room telling a group of our peers about my disease.

I felt betrayed. I could not believe my friend assumed she was in the position to share that information about me with others. Had I not been clear enough in saying that my disease was serious and confidential? Maybe she did not realize doing that was wrong, or maybe I was overreacting. Either way, I didn’t like how it made me feel.

I dwelled on what she had done for days, until I finally realized the real problem: By being so secretive about my disease, I had given her control over that information. If I had just embraced the fact that yes, I do have a disease, she would no longer have the power of my secret over me.

This process of acceptance and openness in regard to my disease didn’t happen overnight. I continued to struggle confiding in others because of what my friend had done. I limited my social circle for years following because it was easier for me that way at that stage in my life. In hindsight, all I really needed to do was own my disease. Secrets are stressful and complicated and give too much power to those on the receiving end. I don’t want my life to be a secret.

As I approach my 22nd birthday, I look back on my 18-year-old self and my heart aches for her. I gave so much power to others because I was not ready to have that power for myself. Now, I realize how empowering and important it is for me to be in control of my disease and who knows about it. I cannot be exposed by a friend if there is no secret to out.

Sharing my story has enabled me to finally feel a sense of freedom from the burdensome secret I carried with me for so long. I realize with a disease that takes away my control of so many pieces of my life, it is crucial that I maintain power over it in any way possible. Transparency is a relatively new concept for me, but I like what it has offered so far.

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8 Things People With Crohn's Disease Are Sick of Hearing (and What They Want You to Say Instead)

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I was diagnosed with Crohn’s disease when I was 9. I have spent my life jumping from treatment to treatment and learning how to overcome the shame that accompanies inflammatory bowel disease (IBD) symptoms.

Sometimes, even though they usually have good intentions, friends of mine (or strangers) will ask me offensive or inappropriate questions about my Crohn’s. For everyone else out there with Crohn’s – this is for you to know you are not alone in this frustration. And for my friends and future strangers: tuck this away for reference. Here are eight things you should never say to someone with Crohn’s (and eight things you can say instead):

1. “My cousin’s friend has Crohn’s and went on X diet or Y medication. You should try it; I’m sure it will work for you.”

Alix taking her medication
Alix taking her medication

What it means to me: You have the best intentions and you are trying to help but you don’t know anything about my medical history or my current diet regimen. You don’t understand how offensive it is to give treatment advice when you are not my doctor.

What you should say instead: My cousin’s friend has Crohn’s and finally found a diet-based treatment that worked for him/her. I know how hard it is to find something that works. I’m here if you want to vent.

2. “My aunt had ulcerative colitis, too.”

What it means to me: Either your aunt is dead or dealt with a different non-chronic illness but regardless, it shows you haven’t done your research. Because ulcerative colitis and Crohn’s are lifelong illnesses, it feels awful to hear you brush them off as something that can be cured.

What you should say instead: My aunt also has ulcerative colitis. (Or, in the case that she has passed away: My aunt also had ulcerative colitis. She passed away X years ago.) It’s an awful disease. I’m sorry.

3. “You can’t eat gluten, lactose or eggs? I totally understand. I’m a vegan and it’s so hard to find food sometimes.”

Alix's breakfast of gluten-free waffles
My breakfast of gluten-free waffles

What it means to me: My disease-based food restriction is equal in your mind to your lifestyle choice-based food restriction, which it is not. As nice as it is to try to sympathize with someone else’s food restrictions, it is beyond frustrating when someone who chose a lifestyle diet change tries to equate it with your disease taking all the foods you love away from you.

What you should say instead: You can’t eat gluten, lactose or eggs? I don’t eat dairy or eggs either because I’m a vegan, but I can’t imagine not being able to choose what to eat. It must be really hard.

4. “You get such-and-such accommodation? You’re so lucky!”

What it means to me: You have no concept of how hard it is to have a chronic illness when you would trade in being healthy and not having early registration for classes or a handicapped parking pass for having a crippling lifelong illness and these tiny accommodations. No, I am not lucky that I get to register a week early for classes at college. I am unlucky that I have a crappy disease (literally) that forces me to adjust my class schedule around my Crohn’s. The worst thing is when people say I’m lucky I am so thin. As fabulous as I may look, the reason I am so thin when flaring is because I can’t keep food in my body for more than 15 minutes. Not so fabulous, is it?

What you should say instead: You have a handicapped parking pass/early registration for class? You deserve it. I know it’s a small consolation for all you have to go through on a daily basis, but I’m glad these small things can provide a little relief.

5. “I don’t get it. Just come with us to the concert and see if you like it. How do you know you don’t want to go until you get there? How can you not like concerts?!”

What it means to me: You have never experienced the panic of not knowing where the closest bathroom is. You have never been so tired that all you want to do is sleep. And you have never felt guilty about letting down your friends (and yourself) because you needed to stay in bed.

What you should say instead: It’s up to how you’re feeling. If you don’t end up going, I’ll text you videos and tell you all about it tomorrow morning so you don’t feel like you missed anything.

6. “You’re in a flare? I had food poisoning last month and it was the worst. There’s nothing worse than one day of food poisoning.”

What it means to me: I have failed as a friend if you don’t understand how severe my illness is. My flares are months and months of food poisoning. There is most likely nothing in your life that you can even try to compare with my flares. So just don’t try.

What you should say instead: I had food poisoning last month and I felt awful. I can’t imagine how hard it would be to go through that every day. If there’s anything I can bring you, like soup or a good book, let me know.

7. “Your last flare was like a year ago, though, right? So you don’t have to worry about flaring right now.”

What it means to me: You haven’t done your research and I haven’t educated you enough. Flares are unpredictable, which means they can come anytime, for no reason at all. Just because I haven’t had a flare in a year doesn’t mean I can’t start one tomorrow. And just because I am just getting out of a flare doesn’t mean I’m magically safe from having another one for a certain amount of time.

What you should say instead: I know you’re scared of flaring during your move to the city. There’s no way to know if you’re going to flare so all you can do is continue your treatment and try not to stress. I’ll be there helping you move in.

8. “It could be worse! At least you’re able to do such-and-such things. I have a friend who has it much worse.”

Alix sitting in her bathroom with her head in her hands
In my “favorite room of the house.”

What it means to me: You just don’t get it, do you? Of course it could be worse. But when I’m sitting in the bathroom shaking and crying, losing ounces of blood at a time, it doesn’t make me feel better to know it could be worse.

What you should say instead: This sucks so hard and I want you to know you’re allowed to cry and feel hopeless. I love you and I’m here for you.

 

This post originally appeared on ChronicBabe.com.

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When a Nurse Reminded Me It's OK to Not 'Get Used to' My Illness

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Every six weeks, I go to the hospital for Remicade. I sit in a chair, IV in arm, and alternate working, reading, watching TV or just napping. After a few hours on an IV drip, I get disconnected and go home until the next infusion. It’s pretty uneventful.

This one infusion, though, the nurses couldn’t get the IV started to save their lives. First the infusion nurses tried — all four of them, two sticks each, except for one brave soul who tried three times. Then, the charge nurse came in with an ultrasound. She sat there for several minutes, patiently going over both of my arms in a failed attempt to locate a vein. She didn’t even attempt to stick me. 

Eventually, a PICC nurse was called. With an ultrasound, an extra-long catheter and two sticks, the IV was in. It had been a full hour-and-a-half of being poked and prodded, and if the infusion wasn’t started in the next few minutes, the medicine would expire and the nurses would need to request a new bag from the pharmacy. 

Having spent the entire morning in classes, I was already exhausted. I looked like a pincushion from all of the bandages on my hands, arms and wrists. Because my doctors had been experimenting with spacing out my infusions further, I was feeling the beginning twinges of a Crohn’s disease flare. It was not a good day. 

The nurses felt awful. They kept apologizing, despite my assertions that I was fine. I know I’m a tough stick; almost everybody has trouble with me. When my nurse for the evening came in to titrate the medication, she apologized once more, saying “I’m so sorry, I know that must have been painful. You were so calm, though!” 

Unthinking, I responded, “It’s fine, I’m used to it.” Then, with a smile, “Practice makes perfect!”   

Still serious, the nurse said six words that totally changed the way I think about my disease: “That doesn’t mean it doesn’t hurt.” 

This is true, of course. But somewhere along the way, I had picked up the impression that I was supposed to be getting used to it. These things weren’t supposed to bother me anymore, like they did when I was a terrified 11-year-old. Sure, my joints hurt, but they hurt every day. I’m used to it. Yeah, I sometimes have to run to the bathroom after I eat, but I know the ways to do it without alerting anybody to my circumstances, because I’m used to it. I’m at my local lab often enough for the phlebotomist to know me by name, so of course getting blood drawn doesn’t bother me. I’m used to it. I have IVs put into me once a month, minimum. It shouldn’t hurt any more… because I’m used to it. 

When my nurse said those six small words, though, words she probably didn’t think that much of, everything changed. I may have accepted the knowledge that my body is intent on destroying itself from the inside out, but that doesn’t mean the destruction isn’t painful. I may spend an inordinate amount of time in hospitals, but that doesn’t mean that somebody shoving a catheter into my veins doesn’t hurt. 

It’s been months since this encounter, but when I’m having a particularly hard time, or when I’m feeling as though I can’t put on a brave face anymore, I think about what that nurse said to me that night. I can be strong, fight this disease, survive this disease and still hurt. Just because you’re hurting, too, it doesn’t mean you aren’t tough. It means you’re a fighter.

The Mighty is asking the following: What’s the best thing a medical professional has said to you related to your (or a loved one’s) disability, disease or mental illness?  Check out our Submit a Story page for more about our submission guidelines.  

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To the Lady in the Grocery Store Who Approached Me When I Felt Numb to Life

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Dear Lady in the Grocery Store,

I’m not sure if you remember, but six years ago you told me I was beautiful. You approached me in the produce aisle with a smile and commented generously on my complexion and features. You went out of your way to share kind words, and I am forever thankful for that brief moment we exchanged.

Earlier that day I had been released from my first hospital stay due to complications of my newly-diagnosed Crohn’s disease. At the lowest point in my life, I was struggling to keep a smile on my face and hope in my heart. I had not yet processed the unexpected turn my life was about to take because of my illness; I was focused so intensely on my pain and suffering that I had not entertained a positive thought in weeks. I felt like a zombie… actually, I didn’t really feel anything at all.

I was numb to life around me. My mind was consumed with new medical terms and names for medications accompanied by so many side effects that the thought of it kept me up at night. I was losing friends and hobbies left and right and subconsciously pushed my loved ones away because I was so overwhelmed. I felt guilty, burdensome, defeated and sentenced to a new life I did not ever envision for myself. I had forgotten how important it is to be kind to others, let alone be kind to myself.

When you gave me that small, superficial compliment, I snapped out of my dreadful funk. At a time where my life was really ugly, you made me feel beautiful. I was reminded that the little things in life, like compliments from a stranger, are powerful enough to lift a person’s mood and refocus one’s energy onto that which is affirmative and uplifting. There are nice people in this world willing to make others feel special, whether intentionally or not.

young woman sitting up smiling in hospital bed
Ashley at the hospital

From that day on, I started making a conscious effort to elicit joy from life more freely and frequently. All it takes is one sincere comment, action or event to remind a person that life really isn’t so sad after all. I smile when the weather is nice, am excited when my favorite song comes on the radio, and feel cheerful if the person in front of me holds the door open. Sometimes I just need a little extra boost to get back on track to positivity.

I cannot remember what you looked like, Supermarket Lady, but all that matters is that I remember how you made me feel. You taught me how important it is to be nice to others, to go out of my way to make sure a nice thought is shared with a friend or stranger. One can never know what a person is going through, and when a simple gesture can have such a meaningful impact, the effort is worthwhile.

Six years later and I still make sure to help others the way you helped me that day. Thank you for being thoughtful. I am mindfully grateful for small acts of kindness and I carry the impact you had on me in a special place in my heart.

Sincerely,

Ashley

Follow this journey on Ashley Esper.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. Check out our Submit a Story page for more about our submission guidelines.

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The 6 Phases of a Chronic Illness

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If everything happens for a reason, I am way overdue for an explanation. For years I have struggled with understanding why I was given a disease. In the beginning, I went through the common phase of denial, pretty much rejecting the idea I had anything wrong with me. That didn’t work out very well because it is hard to deny you’re in rough shape when you’ve been in and out of the hospital for a few months, taking fistfuls of medications daily.

Next I moved into the isolation phase. This stage was particularly damaging to my mental health because I went months without talking to anyone unless it was out of necessity. At this time I was in high school and spent all of my time studying or researching Crohn’s disease and related topics on the internet. I even pushed my family away; I wasn’t myself… I was having trouble figuring out who myself even was.

I never dealt with a stage of anger because my feelings mostly manifested as sadness. In general, I do not get angry but rather upset. Instead of feeling mad about my situation, I would just feel sad, revert back into my safe space with limited social interaction, and there began the vicious cycle. Because I am very reserved, I never like for anyone to know I am suffering. My way of dealing with pain, emotional or physical, is to handle it quietly on my own.

When I finally accepted my disease as a reality, I learned to cut myself some slack. I am a perfectionist, which makes it difficult to concede to the idea that because of my disease, things will never be exactly perfect. With support of my family, a lot of soul searching and my ability to find the good in things, I was finally able to stop punishing myself for something out of my control.

The next phase, which I could coin as “turning lemons into lemonade,” is where I embraced myself for who I was, disease and all. I am good at a lot of things and have great sources of joy in my life. Who cares if I have a disease? I started sharing about my health more openly and making jokes about my disease to lighten the mood during sad times. Oh, I have to leave family vacation early because my leg is so swollen from erythema nodosum that I can’t walk? At least that will be a great story to tell of my sister frantically pushing me in a wheelchair through the airport. I even wrote a manuscript about my journey with Crohn’s disease, which really helped me to process what had happened and reflect on the positive that has come out of my negative experiences.

I am now patiently waiting for the reason why this happened to me. The best part about this phase is that I am content in it. It is my sincerest hope that the reason life has thrown me such a big curve ball is to allow me to help others in my situation. Even better, I hope I can help others that aren’t in my situation to understand what it’s like to have your life dictated by something out of your control. My life isn’t easy, but having something so huge to deal with, such as a disease, has made everything else seem conquerable. I can handle what I go through because I choose to do so. I have Crohn’s disease, Crohn’s disease does not have me.

The Mighty is asking the following: Coin a term to describe a symptom, characteristic, aspect, etc., of your diagnosis. Then, explain what that experience feels like for you. Check out our Submit a Story page for more about our submission guidelines.

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Why I Don't Always Do What's 'Good' for My Illness

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I spend every day controlling every minute detail of my life. To call me a control freak is an understatement. Each morning, I take a shower, brush my teeth, then take my morning handful of meds. I stop eating before I’m full. If I want to savor the occasional soda, I open it and leave it out until it’s flat, but not long enough that the syrup settles.

Now, I don’t do these things because I have a problem with control. Trust me, self control is not my forte. I do all of this to maintain a very sensitive homeostasis. If I get out of the shower and head straight for my meds, I’ll be nauseous before I’m fully dressed. Drink that fresh soda? I’m down for the count with a bloated belly. Forget about enjoying a full plate of delicious food. I’ll be in a Tramadol-induced stupor for the rest of the day, fighting the bull tearing through my guts. Crohn’s disease has introduced me to a life of schedules, rituals and monotony. I know the consequences and avoid them like a bitter ex-boyfriend. And I hate it.

I hate the schedule. I hate the fear of diverting from it. I hate the constant reminder of consequences and punishments. I want to enjoy sugar in my tea. I want to eat when I want, not when I know I should. I want to sit with my girlfriends and eat heaps of ice cream. I want these things so badly, but I know the hell I will have to pay.

Some days, I decide I can’t live in that fear. Some days, I make a choice that is good for my soul, rather than what’s good for my body. I eat a little more. I push myself a little harder. I do as the Romans do, so to say. I can enjoy the company of friends over an overflowing dinner table. I can eat the buttery, crispy popcorn I used to love as a kid. Will there be a price to pay later? Yes. But that’s OK.

I survive by waking a feather-thin line, juggling so many pins that can never touch the ground. But sometimes, all I’m doing is surviving. I miss out on the “living.” I miss out on the laughter and indulgence and joy. And those three intangible things are the best form of medicine for me. I need to partake in the joys of life every now and again, even if it’s against better judgement. I also know this can throw you for a loop.

As my loved ones, you run around with a safety net, trying to catch me if I falter. You live this life right along with me and know my schedule better than I do sometimes. I can see your raised eyebrow as I pop a baby carrot in my mouth. I can hear you telling me we can “leave any time.” I see your care and concern, but please understand: Some days are for me. I promise, tomorrow we’ll go back to the shower-teeth-meds routine. I’ll eat the overcooked veggies… Tomorrow. I’ll watch my sugar intake later. But today, my soul needs this. Today, we are living.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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