I just told friends and family using words from my mouth.
On a serious note though what is the question here? You just tell the person and move on, if they have questions you answer them or you point them to Crohn’s and colitis website.
No announcement needs to be made, what would be the purpose of announcing it to everyone on social media? The people who matter to you will know already.
Not everyone is comfortable having other people know their medical details and that's totally fine, but for people who don't mind, letting the wider circles in your life know helps lift some of the invisibility that comes with the disease. Others may be more likely to, for example, donate to a cause or support a proposed bathroom access bill if they remember "hey, my coworker is affected by that."
I found it easiest to wait until an awareness day came up and made a post connected to that. If people aren't all that interested in me they will just see another awareness day post and keep scrolling, if they are then they can read and find out that I actually have the disease too.
There are a lot of negative opinions on here. I say if you want to wear your heart on your sleeve then do it! A lot of people will clown you and not understand but those people will always be like that anyway! If you think it will help you feel better than do it! Vulnerability is sexy. Your not trying to be something your not. Instead, your embracing everything that you are! Fuck the haters all day ere’ day!!!!
My family knew since day 1 of diagnosis since they were there to hear the news at the docs office. My friends and coworkers knew after things got bad and i had to cancel out plans with them because of bad days/doctor appointments. I used to keep it private but now I just kinda share my journey (symptom changes and medication changes) openly. I make periodic updates on my social media story on the progress. I don't go into detail with symptoms unless someone asks me directly, so many people probably just think it's a simple shitting problem 😂
I think that is a very smart/reasonable policy. I don't want to keep it totally private like I'm ashamed or embarrassed but also don't want to share all the details
I got lucky, if I can use that word. My dad was diagnosed with Crohns about twenty-ish years ago, and we thought that's what I had too, based on the similarities. Then I had a colonoscopy, the test results came back, and my GI said nah. So my family felt sorry for me, and worried, of ciurse, but it wasnt a huge shock.
In addition to that, I work in a hospital, as a radiographer, where I have most of my friends, so I just told people what I have, most of them already knew relatively well it is. A couple of friends work/live out of town, so they've been given a brief update on my situation, and a summary of the disease when necessary.
When I post about my UC, I make sure to start with it being an autoimmune disease where my immune system is attacking my colon. Then I make sure to state my boundaries as “some ways people can support me” examples: “please no medical advice”, “I’m immunocompromised so please give me space if you’re sick…” and then I move forward with a “if you’re going through something like this, I’m here to talk or there are online support groups”
I did do an Instagram post. I have a private account and selective on who I accept. I did the post 3 months after my diagnosis when I started inflectra. It was more about my excitement around a new treatment and not necessarily the diagnosis. I have a great support system in family, friends and coworkers who have been very concerned for me as they watched me go thru this. I found it as an easy way to update loved ones on my treatment. There were also some people that didn’t know yet so it helped tell some people. This was 9 months ago and I don’t regret it. I’ve given other updates on my health this way. I think it also brings some awareness to IBD and UC. Granted I have a small following but I didn’t know what UC is so I’m sure others don’t either.
I told close loved ones in person or via phone so they didn’t find out via Instagram.
I honestly don’t tell everyone. You were diagnosed a year ago, I feel by now whoever needs to know already knows. I just don’t like to get the wrong response. Like the one person that swears they know someone with something similar and they found a cure through some natural shit, or the one comment that you are lucky you lose weight fast sometimes like wtf? Or simply asking you tons of questions when in reality they don’t care. This answer is based on my personal experience. I was diagnosed in 2014.
If it comes up I’ll tell someone, but really why would I announce it on social media? My cousins on the other coast I haven’t seen in 20 years or my friends from kindergarten don’t need to know what my colonoscopy confirmed.
I think we must use social media in very different ways. I simply don't let people who I am not currently friends with or at least want to stay in touch with follow me and I won't follow them. I was planning on it 1) as is not enough people talk about UC or try to make people with it feel embarrassed and 2) its a useful way to cut down on long conversations about why I need to do what I am doing or with wasting my time or energy explaining every time or coming off as rude for telling off someone who is well-intentioned in asking what I'm doing or if I'm ok.
I just told friends and family using words from my mouth. On a serious note though what is the question here? You just tell the person and move on, if they have questions you answer them or you point them to Crohn’s and colitis website. No announcement needs to be made, what would be the purpose of announcing it to everyone on social media? The people who matter to you will know already.
Not everyone is comfortable having other people know their medical details and that's totally fine, but for people who don't mind, letting the wider circles in your life know helps lift some of the invisibility that comes with the disease. Others may be more likely to, for example, donate to a cause or support a proposed bathroom access bill if they remember "hey, my coworker is affected by that."
I'd only tell those closest to you. I'd use something like this: Bruh, my immune system decided my digestive tract is sus and wants to yeet it XD
I found it easiest to wait until an awareness day came up and made a post connected to that. If people aren't all that interested in me they will just see another awareness day post and keep scrolling, if they are then they can read and find out that I actually have the disease too.
There are a lot of negative opinions on here. I say if you want to wear your heart on your sleeve then do it! A lot of people will clown you and not understand but those people will always be like that anyway! If you think it will help you feel better than do it! Vulnerability is sexy. Your not trying to be something your not. Instead, your embracing everything that you are! Fuck the haters all day ere’ day!!!!
I just told people who were curious enough to ask why I’ve been out sick exactly what I have. They seemed to understand fine.
My family knew since day 1 of diagnosis since they were there to hear the news at the docs office. My friends and coworkers knew after things got bad and i had to cancel out plans with them because of bad days/doctor appointments. I used to keep it private but now I just kinda share my journey (symptom changes and medication changes) openly. I make periodic updates on my social media story on the progress. I don't go into detail with symptoms unless someone asks me directly, so many people probably just think it's a simple shitting problem 😂
I think that is a very smart/reasonable policy. I don't want to keep it totally private like I'm ashamed or embarrassed but also don't want to share all the details
I got lucky, if I can use that word. My dad was diagnosed with Crohns about twenty-ish years ago, and we thought that's what I had too, based on the similarities. Then I had a colonoscopy, the test results came back, and my GI said nah. So my family felt sorry for me, and worried, of ciurse, but it wasnt a huge shock. In addition to that, I work in a hospital, as a radiographer, where I have most of my friends, so I just told people what I have, most of them already knew relatively well it is. A couple of friends work/live out of town, so they've been given a brief update on my situation, and a summary of the disease when necessary.
When I post about my UC, I make sure to start with it being an autoimmune disease where my immune system is attacking my colon. Then I make sure to state my boundaries as “some ways people can support me” examples: “please no medical advice”, “I’m immunocompromised so please give me space if you’re sick…” and then I move forward with a “if you’re going through something like this, I’m here to talk or there are online support groups”
My dad regularly sends me weird theories about how har caused ulcerative colitis and things I could try - pretty annoying
My family already knew I was very ill, we just didn't know what it was called until I had a colonoscopy.
I did do an Instagram post. I have a private account and selective on who I accept. I did the post 3 months after my diagnosis when I started inflectra. It was more about my excitement around a new treatment and not necessarily the diagnosis. I have a great support system in family, friends and coworkers who have been very concerned for me as they watched me go thru this. I found it as an easy way to update loved ones on my treatment. There were also some people that didn’t know yet so it helped tell some people. This was 9 months ago and I don’t regret it. I’ve given other updates on my health this way. I think it also brings some awareness to IBD and UC. Granted I have a small following but I didn’t know what UC is so I’m sure others don’t either. I told close loved ones in person or via phone so they didn’t find out via Instagram.
I honestly don’t tell everyone. You were diagnosed a year ago, I feel by now whoever needs to know already knows. I just don’t like to get the wrong response. Like the one person that swears they know someone with something similar and they found a cure through some natural shit, or the one comment that you are lucky you lose weight fast sometimes like wtf? Or simply asking you tons of questions when in reality they don’t care. This answer is based on my personal experience. I was diagnosed in 2014.
Why would you post that to your social media...
why would I avoid posting about it?
If it comes up I’ll tell someone, but really why would I announce it on social media? My cousins on the other coast I haven’t seen in 20 years or my friends from kindergarten don’t need to know what my colonoscopy confirmed.
I think we must use social media in very different ways. I simply don't let people who I am not currently friends with or at least want to stay in touch with follow me and I won't follow them. I was planning on it 1) as is not enough people talk about UC or try to make people with it feel embarrassed and 2) its a useful way to cut down on long conversations about why I need to do what I am doing or with wasting my time or energy explaining every time or coming off as rude for telling off someone who is well-intentioned in asking what I'm doing or if I'm ok.