My 8-Step Guide to Telling People About My Crohn's Disease for the First Time

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One way to let others know you are sick is by sharing a link to your blog that details your disease (surprise, Facebook friends I rarely talk to in person!). Just kidding. In all seriousness, letting others know about your illness for the first time can be an extremely difficult task. With time, I have learned what works and what does not work, depending on the person and situation.

Sometimes I am met with a blank response or a referral to a friend’s mom’s brother-in-law who has a neighbor with Crohn’s disease. Other times, the person I am telling reveals that they are pretty familiar with my disease because it has affected them in a more direct way. For some reason, I tend to get very emotional when someone can relate to me on a personal level; hearing a story that is similar to my own experience is touching (and I’m not an emotional person, so I really mean it).

No matter what the end result of the conversation is, starting the dialogue is the hardest part. If only there was a service that allowed you to outsource the “I have a chronic illness” conversation to a trained professional (wow, maybe I’m on to something here). Of course there is no perfect script to eloquently reveal such a deep and personal aspect of your life, but in time I have found that it is easiest to follow a reasonably predetermined conversational structure.

This is the way I typically set up a conversation with a friend whom I am telling about my disease. Timing and setting are also important, especially because it will be a private conversation. Note, results will vary depending on the person’s level of knowledge, sympathy, maturity and cold-heartedness.

1. Introduce my disease and offer a brief explanation. The first thing I ask is if the person knows what Crohn’s disease is. The most common answer is that they have heard of it but do not know what the illness entails. Here I provide a brief overview of my disease, symptoms, medication side effects and limitations I have that they may observe. Going back to the level of knowledge and maturity I referenced before, sometimes it is necessary to explain that no, Crohn’s disease is not contagious, I did not inflict it upon myself and there is no cure. It can be frustrating when a person claims you can cure your autoimmune disease through nutrition or exercise, but just remember they are only trying to be helpful. My favorite response to that is, “Trust me, I have tried.”

2. Only share what I am comfortable sharing. If the person you are telling does not need to know your entire journey from the beginning and every obstacle you have faced, I don’t feel obligated to share that with them. Sometimes less is more, depending on the reason you are confiding in that person. 

3. Explain why I am telling them. Whether the reason is because you need your friend to understand your behavior, grab a missed assignment for you from school, or you have an upcoming surgery and need help afterward, I think it is important to make the person feel important. You are choosing to share personal information with them, and that is significant.

4. If necessary, request they keep the information private. One too many times I have had friends gossip feverishly about my health without my permission. This is one of the reasons I am selective in who I trust (this is not as relevant to me now because I am open about my illness. In being so transparent, I am the one who has the power, not my gossipy friends). In the early stages of my disease, I was not as open about it and felt devastated when I had friends betray me in this sense. Sometimes people do not understand that your medical condition is a private matter, so the best way to keep things under wraps is by reiterating the fact that you appreciate their confidentiality.

5. I always share a bright side. I am a big believer in the phrase “everything happens for a reason.” In telling my story with Crohn’s disease or explaining the illness to others, I make a conscious effort to maintain an optimistic undertone. This can be a hard step for those just diagnosed and coming to terms with a disease, but in time, I believe no struggle is too large to provide a small satisfaction.

6. Be patient and put myself in their shoes. Being on the receiving end of this conversation can be just as hard as the reverse. It was not until I was diagnosed with Crohn’s disease that I educated myself on autoimmune illnesses, so I am not sure how I would react prior to having a base of knowledge to draw from. Some people will not know the right things to say to please you, so just be understanding and thankful that you have given them a reason to learn more about your disease.

7. Offer to accept any questions. A lot of times people need time to process and may not say everything they want to say right off the bat in that initial conversation. I always end the conversation with something along the lines of, “I don’t mind talking about this with you and if you have any questions please ask me.” It makes me feel good when people are curious to learn more about my illness. This could be my personal opinion, but it is great knowing that another person is thinking about what you told them and cares enough to follow up on the subject.

8. Don’t underestimate people. I am a great judge of character, but I find it very difficult to predict how individuals react to such heavy news. It is often a pleasant surprise to see those who I did not think would care for more than five minutes follow up with me weeks later, offering support and help.

Sometimes, the timing isn’t right and you’re forced to tell someone over text or in a rush. I have had this happen multiple times. I sent a text telling a friend for the first time that I had this major disease, I wouldn’t be in class for a week, and would appreciate them sending me their notes. Wow, way to drop a bomb, Ash! Although this isn’t ideal because it leaves the person guessing, I recommend being willing to offer more information at a later date upon request. Remember, the person you are telling does not know any better than you how to handle this delicate situation and may not want to push their boundaries or feel as if they are meddling into your personal life. A great way to spread awareness and establish comfort with uncomfortable topics is through confident communication. Practice makes perfect!

Follow this journey on Gut Honest: Life With Crohn’s Disease.

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'I Can't Go Out': What You Should Know About Your 'Sick Friend'

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One year, four hospitalizations, two surgeries, countless missed life experiences. When people find out I am chronically ill, they have a difficult time understanding the severity of my disease, mostly because I appear completely healthy. I suppose that is more of a blessing than a curse because I am allotted discretion as to who knows about my secret struggle and to what degree. But six years after my initial diagnosis, I am finally ready to bring the truth public, because there is no sense in hiding something that has been largely responsible for the person I have become.

I have Crohn’s disease. To summarize, I have a suppressed immune system, daily pain, fatigue, inflammation, rectal bleeding, sporadic painful lumps on my legs, joint pain, occasional anemia, limited energy and I develop abscesses and fistulas. This translates directly to: I skip out on plans, lose friendships often, nap constantly, know where the restroom is in every public place, am extremely reserved and am tough as nails. What I have been through because of my disease has changed my personality and outlook on life entirely. I no longer worry about the little things in life, deal with drama, or focus on that which I cannot change, because I realize there are way more important things I need to devote my limited energy to. My priorities have shifted to place my health above all else, which does not fare well socially.

Twenty-something-year-olds have a difficult time understanding and sometimes even believing my excuses when I tell them I cannot hang out because I am too sick, too tired or in too much pain. If I can get one point across to those who cannot relate, it is that Crohn’s disease affects every aspect of a patient’s life. I understand having a sick friend isn’t fun when you’re out doing tequila shots and I’m injecting shots of Humira. I also understand how difficult it can be to find the right words to say when I am in the hospital, recovering from a surgery, missing classes or rapidly losing weight because I am too sick to eat. I didn’t choose this disease, but I have learned to cope with it, and in doing so I have accepted the fact that my social life will suffer.

But is that really what I should have to do? On top of everything else, from medical tests and infusions to dietary restrictions and way too many doctor’s appointments, I finally realized I should not have to endure any more limitations than have already been directly inflicted on me by my disease. My body is beating the crap out of me, literally and figuratively, 24 hours a day, every day, and will continue to do so for the rest of my life. I don’t ask for much, especially from friends or acquaintances, out of fear of becoming a burden, but I do ask that when dealing with someone who has a chronic illness, you remember these few things:

Looks can be deceiving: Crohn’s disease is an invisible illness, as is multiple sclerosis, lupus, rheumatoid arthritis, etc. Just because you cannot see my limitation or struggle does not mean that it does not exist.

I don’t want negative attention: My intention in telling anyone about my disease is either for emotional support or out of necessity as it relates to school or work. Never have I ever sought negative attention or special treatment because of my health condition.

I am not embarrassed, so you shouldn’t make me feel that way: It took me years to come to terms with the idea that my body fails me. If you see me going to the bathroom multiple times in an hour or sleeping an ungodly amount during the day, please do not make me feel worse than I already do. Acceptance is an extremely difficult part of having a disease and is required not just of the person with an illness, but of others as well.

I don’t intend on cancelling plans, it just happens: I am sure anyone that knows me can attest to the fact that I have a tendency to bail out on plans last minute. The unpredictable nature of my disease doesn’t allow me to know what days I will feel great and what days I will feel like I got run over by an eighteen-wheeler. Please do not give up on me as a friend; a simple invitation means a lot.

I still do productive things: I just graduated college with a 3.93 overall GPA, have a job lined up upon completion of my master’s degree, work out as much as possible, and for the most part am a normal 21-year-old. Life goes on with a chronic illness. Not all days are bad days.

I am knowledgeable and want nothing more than to inform you: Over the course of my time with Crohn’s disease, I have spent countless days and weeks in bed. Thank goodness for the internet, because it has allowed me to put that time to good use by researching anything and everything related to my disease. I enjoy sharing this information with others, so never be afraid to ask me a question. Knowledge is power.

Follow this journey on Gut Honest: Life with Crohn’s Disease.

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What I Do When Strangers and Friends Make Cruel Comments About My Ostomy

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There is so much that goes into having an ostomy. You have to train your brain not to use the bathroom as much, you have to get through self esteem issues because your body is so different and you have to become confident in your new normal. It takes time, months or even years to feel comfortable in your own skin. Now when you add on the rest it can be overwhelming and terrifying. You have to tell friends, family and strangers. 

I have had the cruelest of the cruel said to me, especially in the beginning. Here are a few examples of people saying the wrong thing. 

I actually had a friend who refused to hug me. She didn’t want to get what I had. I was heartbroken and I knew something like this could happen. Needless to say… I weeded her out. 

This is a sore subject for me: When it came time for the personal decision of choosing not to have kids, I was called “selfish, not a woman, robbing my husband a family, etc.” I couldn’t move, I just had to swallow my tears and words that I had. I was brought up to treat others as you would want to be treated. As you can imagine I do not talk to that family member. 

I had a friend say at a party one time, “No offense, but why would he (my husband) want to marry a girl like me if I couldn’t give him children?” That was tough to swallow — she was a good friend and I had to tell myself she doesn’t know any better. I got in the car and had an ugly cry moment. I just had to believe there is a reason why I am here and living this special journey. 

bride and groom standing at altar
Cate and her husband, who married her for who she is, not what she has.

I still to this day have a hard time trying things on when I am shopping. I went into a clothing store (a very popular clothing store) and I wanted to try on a pair of jeans. Now this was my first time out shopping and having my ostomy bag. I was very insecure and terrified. I went into the dressing room and tried on the jeans. Well, being small and having a small torso made it quite difficult. The sales associate kept pushing for me to come out and look at myself in the mirror to get a better angle. I politely declined but she kept pushing. Finally I stepped out with a pair on. I was wearing a long baggy shirt. She began to fit me around the waist and touched the top of the bag. She quickly said “What’s that?” I replied quietly, “It’s an ostomy!” She wanted to know why I had one and what it does. I explained hesitantly and I could have crumbled right on the spot. She said, “I would have chosen death over getting that nasty poo bag.” Talk about a “why me” moment. 

I stopped myself from crying because I knew this was a feeling I never wanted to forget. In my journey to this day it can’t get any lower than that. I tell those particular stories because each situation is a teachable moment. Now being older, I have found it is better to educate than to completely knock someone out because of their ignorance. When others say negative, cruel and damaging things to you, you have to flip the negative to a positive quickly. The faster you flip the negative to a positive, the better off you will be. 

To this very day, I can’t go a week with out someone saying something offensive. I will take the comment, and then politely walk away. To those who hate us, to those who judge us, to those who choose to bring you down — weed them out. Hold your head high because I stand with you, next to you and know I am proud of you! 

I try to maintain my humor through all of it. I found naming my stoma “Willy” helped with personalizing it more. Humor helps balance me and keeps me grounded. My faith is a very big thing to me. It has seen me through the toughest of times. I am human and I do have those days when I wish I had my old body and I just stand in front of the mirror and cry the ugly cry. In those moments I know it is the disease talking and I choose not to own it. Not owning it is a huge coping mechanism for me. 

With a chronic illness such as Crohn’s disease, people can be harsh with words and some may even think you are faking your disease because they can’t see it. I have gotten thick-skinned throughout the years. Some say I lost my filter, especially when hurtful words come out of others’ mouths. I find when I get in an uncomfortable situation I need to really listen. Listening is key because if you walk in on a conversation about you, it is better to be calm and be ready to educate. I surround myself with good people and I believe you have to weed out bad ones, even if that means family.  

I am proud to have Crohn’s! I am proud to have an ostomy, aka my poui-Vuitton bag! It has taken my years to get to this point of accepting it. This is my body, this is my story… this is what I have but not who I am… and I am proud of it!

The Mighty is asking the following:  Tell us about a stranger’s comment about your (or a loved one’s) disability, disease or mental illness that has stuck with you for one reason or another. Why has it remained significant to you? Check out our Submit a Story page for more about our submission guidelines. 

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My Mom's Simple Mantra That Gets Me Through the 'Full-Time Job' of Crohn's Disease

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I was raised on Long Island in a time when the world was safe and the scenery bucolic. When I was in high school, the biggest things we worried about were our grades, getting dates for the prom, and getting caught smoking in the girls’ bathroom — the stuff of “old” movies from a much simpler time. Back then, my mother had a simple mantra about life: “It is what it is.” Now, don’t get me wrong, it annoyed the hell out of me when she would point out that there are just some things in life that are the way they are, whether or not we like it, but her simple mantra eventually became prophetic for my life.

I was diagnosed with the Crohn’s disease when I was 18, in my third week as a freshman in college. It was my first foray into serious illness and, at that time, although I knew I was seriously ill, I thankfully had no idea what that really meant. In hindsight, I now realize it became my first, full-time job and one for which I hold a very lengthy medical resume.  Having a profession and a chronic disease is like having two full-time jobs — one that you can retire from and one that stays with you, forever. After college, where I earned a BS in a dual-major, I worked and went onto graduate school, continued working full-time, earned a Master’s degree and, eventually a doctorate, all while battling the full-time disease, surviving many, many hospitalizations, bowel obstructions, NG tubes, ileostomy surgery and the additional surgeries which followed the original ostomy surgery.

What I learned in those 35 years is that despite vacations from work, holidays with family and friends, and a first marriage that ended in divorce, my chronic disease never really took any time off.  When I called in sick from my profession it was because my “other job” took precedence. The disease waxed and waned and came and went in its often-debilitating intensity, but, in the long run, it never really “took a holiday” as the British say. Like an appendage, it became such a part of who I am and how I function (or don’t function when I am feeling poorly) that I never realized its constant and ever-active presence! Maybe I did realize its ongoing presence and my coping skill was to not allow it to be ever-present in my mind, or maybe I just realized that, no matter how debilitating it was or how frustrated I became, it didn’t really matter, because anger and frustration didn’t help.

What really mattered was my ability to keep moving and resilient to whatever my chronic disease had in store for me. Enter mom’s voice: “Honey, it is what it is.”

mom and her adult daughter sitting at a table
Jeanne and her mom.

Crohn’s disease doesn’t only attack the stomach or intestines, but can attack and damage any portion of the digestive track, from the mouth to the anus.  It can also morph into the rest of the body and often, in a co-morbid manner, affect areas of the body you don’t expect. So, even when the disease is not “active” inside of what is left of my small intestine (I had an permanent ileostomy in 1999) the fatigue, joint pain, muscle aches, headaches and/or side effects from the myriad medications I have taken to treat the debilitating secondary and tertiary symptoms also attack my body, as well as my mental health! But, what I hear running on a loop in the recesses of my brain is my mother’s voice saying, “Honey, it is what it is.” She never said it to lessen what I was going through, but to help me remember not to get too caught up in what I couldn’t change, because that would be futile.

So now, in addition to my trying to find my place in the world as a retired educational professional, I also take time to make peace with, and experience, the co-existence with my remaining full-time job, that of survivor of long-term, chronic disease. I acknowledge its presence in my life, I appreciate what I can’t change, but I also take the time to appreciate that I continue to have the ability to fight an insidious disease so many are lost to each year.

Mom, you might be gone from this world, but your simple phrase still resonates in my life, because you were right all along… sometimes, “It is what it is” and you just have to keep moving.

The Mighty is asking the following: What is the best advice your mom gave you while growing up with a disease, disability or mental illness? Check out our Submit a Story page for more about our submission guidelines.

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Aimee Rouski Shares Photos of Ileostomy Bag to Raise Crohn's Disease Awareness

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Aimee Rouski, a 19-year-old with Crohn’s disease, is speaking up about invisible illnesses.

Conditions like Crohn’s, a type of inflammatory bowel disease (IBD) that causes debilitating digestive symptoms and pain, are often dubbed “invisible illnesses” because they rarely have visible symptoms.

“See, you can’t tell that I have a stoma so don’t worry about it,” she captioned her photo in a post on Facebook.

Amy Rouski
Facebook: Aimee Rouski

But for many like Rouski, Crohn’s disease is far from invisible. According to the Crohn’s and Colitis Foundation of American (CCFA), around 70 percent of people with Crohn’s disease will ultimately need surgery to manage their condition, many of whom, like Rouski, will require an ileostomy bag.

Amy Rouski's ileostomy bag
Facebook: Aimee Rouski

“My Crohns has left me with a permanent ileostomy, no large intestine, colon, rectum, anus, or inner thigh muscles as they were used for plastic surgery on my wounds,” she shared on Facebook.

Rouski shared her post hoping to inspire others with Crohn’s disease and invisible illnesses to share and celebrate their differences.

“I’ve always been okay with the stuff that has happened to me, but some people have real difficulties accepting these things so I just want to say this,” she wrote. “No one will know unless you tell them. People who know will still love you and still find you beautiful. Your illness is nothing to be ashamed or embarrassed about”

You can read her Facebook post below:

She writes:

“I’ve wanted to do this for a while because I always see body posi posts for weight, but not many for disabilities / invisible illnesses.

First off I have Crohn’s disease, it’s a serious incurable illness that nearly killed me, not just a stomach ache like most people seem to think.
A person with crohns will go through many different treatments including surgery, and it’s the surgery I want to touch on now.

My Crohns has left me with a permanent ileostomy, no large intestine, colon, rectum, anus, or inner thigh muscles as they were used for plastic surgery on my wounds.

I’ve always been okay with the stuff that has happened to me, but some people have real difficulties accepting these things so I just want to say this.
No one will know unless you tell them.
People who know will still love you and still find you beautiful.
Your illness is nothing to be ashamed or embarrassed about”

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Please Don't Say These Things to Someone Dealing With a Disease

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It seems another post about what not to say to people with illness is needed because another week has passed, and I am still receiving messages and comments filled with unrealistic suggestions and incorrect statements about how to deal with my issues. From strangers, mainly, no less.

Since I have been dealing with two recent diagnoses, I have shared a lot of information about myself, our infertility and, my Crohn’s disease.

I have also shared what not to say to people struggling with similar conditions, and yet, some people still go out of their way to offer up suggestions for me to “try,” opinions on what I am doing wrong and “solutions.”

So, another post about communication etiquette, from my point of view, is warranted.

1. “You need to relax.”

This comment makes me beyond livid every time I read or hear it.

Not once have I ever went into the doctor’s office and they suggested I relax to heal my problems. Not once have I been told relaxing helps those who have been medically diagnosed my conditions. If it were that simple, there wouldn’t be doctors still searching for a cure for Crohn’s disease. I’m sure my doctors would avoid all this medication and repeat scoping if this were the case. No, relaxing is not going to work. And telling me to “calm down” is the best way to ensure I don’t calm down.

2. “Everything happens for a reason. It’s all in God’s plan. Have faith and it will all work out.”

Telling me everything happens for a reason gives me the impression you blame me and my choices or that you feel I did this myself. It makes me think you believe I deserve what’s happening to my body. It gives me the impression it’s just meant to be or that if I wasn’t such a “sinner,” I wouldn’t be sick at all. (I’ve actually been told this.)

Maybe you can tell me the reason my body hurts on the inside or why my skin breaks out and why I feel nauseated all the time? Or maybe you can tell me the “higher reason” why food, my favorite thing, seems to be my nemesis? While I appreciate your prayers for me, please don’t ask me to “find God for healing.”

3. It happened to my stepfather’s brother’s wife, so I understand.

Unless you have spent time actually researching my specific issues for yourself, you really have no idea what is happening inside my body — only an idea to compare it to. Just because your stepfather’s brother’s wife had Crohn’s disease or a cousin of yours was infertile does not mean you know what’s happening in my body. You’ll never fully understand unless you experience issues of your own. This is why I share my story — so others can understand my version.

I do understand you may be “just trying to help,” but if you take the time do the research, even just a little, you will see that every single person with Crohn’s disease has different symptoms. No two people will experience the same symptoms, the same flare-ups or the same medical treatment. That’s why it’s so hard to diagnose.

4. “Have you tried this? Could it be this/that?”

Just because one person has symptoms related to gluten or spicy food doesn’t mean another will too. This means the treatments that have helped your family members may not necessarily help me. Finding the right care for yourself takes time, doctors’ opinions and a lot of medication testing.

While I appreciate the offering of new information, this isn’t a new illness for me. As someone who has been dealing with Crohn’s and infertility for years now, if there’s an article, website or any other information available about the cause, you best believe I have seen it, screenshot it, sent it or saved it. I want to know it all.

When doctors give me any information about a new diagnosis, I make sure I WebMD the hell out of it. I spend the next week researching any details I can, looking into any symptoms, tests or details available. I like to go back to the doctor with more knowledge about the process than they have.

Although some of these messages with “try this” or “try that” may be genuine and truly offered with sincerity, I thank you, but I am good. I am owning my Crohn’s disease and infertility. I have done the research on my issues, and any questions I have will be discussed at my next doctor visit.

5. “It’s no big deal.”

This one hurt’s the most — to know your issues are not high priority. When you tell me my issues are “no big deal,” what you’re really saying is they are no big deal… to you. Coming to that realization, that your issues don’t matter, it hits you like a brick wall.

When you tell me my problems are “no big deal,” what you are really saying is I am unimportant. You are really saying my feelings are invalid and my emotional and physical well-being should be overlooked. You are saying you cannot be bothered to care about what happens to me or my body. What you are really telling me is you don’t care. Period.

When someone you know is diagnosed with an issue or disease, you do not tell them “it’s no big deal.” Instead, you offer up your support, kindness and hope. Whether it be family, a friend, a coworker, you always give your undivided attention to that person because their issues are important, life-changing and most certainly, a big deal.

When you tell me “it’s no big deal,” you are showing your true feelings – that I don’t matter. When you tell me to calm down, you are minimizing my problems and taking away the reality of just how negative my situation is.

I have two diagnosed issues to dwell on daily, and I feel I have every right to be upset. I can be angry because they are a big deal to me. They are a big deal to my family and my future. These are issues I am going to have to live with for the rest of my life. I have every right to be angry, I have every right to worry about what’s next, and I have every right to dwell on my symptoms. Why? Because they affect every aspect of my everyday life.

Seriously.

But I do thank you all for taking the time to read my journey and for trying to help. I feel like I have to specify the kind words and gestures given to me are extremely valuable and meaningful. And this post is not meant to curb your interactions with me, only to help you avoid making an offensive comment, and to help you understand how I may interpret your words.

I cannot thank you enough for taking the time to read and comment on my posts, and I thank you for letting me in on your lives.

A longer version of this post first appeared on MaryMHorsley.com.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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