How private are you about your c diff?

[NS789]

Hey everyone. Since I've been diagnosed with c diff, I've been really private about it, only telling a couple of my closest family members that I have it. For some reason, I feel embarrassed about it and find it hard to admit I have it to other people. I've missed a lot of events in the last several months and I'm sure people are wondering what the heck is going on with me and why I keep "flaking" out on things. But I always feel like a) I'm going to freak people out if I say I have c diff (because it's a scary and contagious thing, and frankly I'd be scared of someone with c diff if I was a healthy person lol) and b) I'm embarrassed by the symptoms of c diff so I don't like telling people about it.

But by keeping it private, in some ways I feel l'm burdening myself and my mental health.

I'm just curious how others have handled this. Have you kept it private? Or have you been open about it? Are you embarrased by it?

This forum has been a huge help by the way. Thank you all.

[poppy86]

Aside from telling my sister and a few close friends, I have been quite private about the cdiff. When things were really bad a few months ago and my husband was recovering from surgery, my in-laws watched our son, and I told them what was going on then. They were rather disgusted. My sister blamed me for it, saying that it was my fault because I shouldn't have taken antibiotics (even though she has taken antibiotics numerous times herself). So I tend not to talk about it. I feel like I'm always contaminated and can't get clean no matter how much I wash and bleach things. I'm very anxious all the time about any stomach pain or rumblings I have going on, and it's extremely preoccupying. Because of covid there haven't been many social gatherings for me to go to, but if I got any invitations, I would be skipping them because I don't like to be far from my own bathroom.

[beth22]

I am a teacher, so I told administration at my school and members of my department because we all shared a bathroom in our office (nobody else got it). I told my family and close friends. Other than that, if something came up that I had to turn down and it was a person who was my friend, I would tell. But, I didn't go and advertise it. Most people really do not understand this disease anyway. They think it's like a stomach virus and don't understand why taking meds doesn't give you an instant cure.

[roy]

Some people see it as contagious but dont understand the mode of transmitting it or that their own gut flora (usually) has to be compromised before they can catch it.
They look it up on Google and freak out.
Theres even been a couple of schools that closed for deep cleaning after a teacher had c.diff and that's totally ridiculous!
Easiest way is to just say you have a wierd tummy bug and dont want to spread it around.
No need to name it.

[NS789]

Poppy, I'm sorry to hear that your in-laws and your sister reacted that way! That must have been tough. I worry about people being disgusted by c diff too... the same as your in-laws. And I know what you mean about wanting to stay near your own bathroom. I usually love hikes and road trips in the summer but I'm terrified to go anywhere without a bathroom close by now.

Beth, you're right. There's not much awareness about it. Most people think it's something that's only seen in hospitals or nursing homes. It's hard to get people to understand the seriousness of it and how difficult it can be to beat.

Roy, I agree with that approach. I've been telling people that I have a persistent stomach infection and leaving it at that!

[Ali-Mar]

I have been telling anyone and everyone that I run into, my colleagues, my friends, family, neighbors, stranger etc... I tell them all about the C Diff, challenges, and the reasons you can get it, etc. I think it is important for people to know. If I knew what I know now, I would have never allowed my dental hygienist to use antibiotics as precautionary measures on my gum every 4 months for last 3 years, which is the reason I contracted C Diff.

I have told many people more than 30 people, many times on work video calls, but strangely no one even heard of C Diff, except one of my friends and because he is working at hospital taken MRIs.. At first I thought I was the only one who never knew about C Diff until I contracted it.

I feel I have to educate people and warn them to avoid unnecessary antibiotics even a tropical abx, because I wish someone told me!

This is the abx that my hygienst used on my gum every 4 or 5 months after regular cleaning for no reason for last 3 years!!!!

https://www.drugs.com/disease-interacti ... estin.html

[NS789]

Wow, did you know they were applying that antibiotic everytime, Ali? Or were they doing it without your knowledge?

[Ali-Mar]

NS879, only the first time she was going to use it she told me and I told her I rather not, as I have heard antibiotics are not safe to use, she said "not this one, this one is localized, stays under the gum and it is only 50 mg" and went on and on and convinced me it safe ...

Ali

[Ygy]

I understand completely how you feel. I felt the same way.

If you feel better keeping it private then by all means keep it private. But please don’t feel ashamed because it’s not your fault. I agree it is very difficult to talk about because of the nature of the symptoms. But remember you’re not “dirty” or “contaminated”, you are just trying to overcome a serious health issue.

I first contracted cdiff when I was 26 years old and I was an RN and I was very secretive and I didn’t give a reason for quitting my job. I thought bc I was a nurse somehow people would think I didn’t wash my hands well enough or clean well enough. Which is not the case- bc I was even a germaphobe before I got cdiff.I easily got better with 7 day vanco treatment but I was so embarrassed and ashamed like I thought it was my fault or something. I barely told anyone. My sister told a few of my close friends and I was really angry but my friends are mostly nurses so they had a lot of empathy.

The 2nd time I got cdiff after an antibiotic at age 31. It was so emotional, so I told a lot of my friends so they could be praying for me. I of course waited until I was symptom free to see/hang out with them but receiving their calls/texts really helped my mental health.

The 3rd time I got cdiff at age 32 after my csection, I told pretty much everyone. And after I was symptom free for a month I started going out again and seeing people and friends. The previous times I had waited probably 2-3 months to even go out.I was well was tired of being embarrassed and ashamed and keeping it secret for me just fed that feeling of shame.
I started therapy and medication as well and that helped me immensely. Telling people was honestly freeing for me. But like I said it’s a personal and different choice for everyone.

Prayers for your recovery. It’s such a hard thing to go through. But remember there’s light at the end of the tunnel:)