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Sharing Medication Experiences With Others

One of the benefits of sharing our personal experiences with others is that it allows someone who is going through a difficult time to know that they aren’t alone. In the age of social media, it can seem like everyone’s life is rainbows and unicorns. So for a person who is suffering, it can lead him/her to ask the question “why me?” Especially if it seems like everyone else’s life is perfect.

Talking can be therapeutic

In addition to letting others know they aren’t alone with their struggles, it can be therapeutic to talk about difficult chapters in your life. Talking about some of the secrets you have kept with other people who understand can often feel like a weight has been lifted. This can be especially true when chronic illness enters the picture.

Those of you who have dealt with Crohn’s Disease or ulcerative colitis for any length of time have probably tried a wide range of therapies and medications. You also have most likely had your fair share of doctors appointments and medical tests. With all of those experiences, it is normal for us to develop certain opinions about various tests, medications, types of doctors, hospital protocols, etc.

The mental impact

In addition to dealing with so many physical things because of inflammatory bowel disease, a lot of us have been impacted mentally as well. In my experience working with the IBD community, anxiety, depression and post-traumatic stress disorder are the main mental health issues that come up as a direct result of living with Crohn’s Disease or ulcerative colitis. Because of the intense emotional effect that living with a severe chronic illness can have on a person, it is not uncommon for a person suffering to seek help. That help may be talking to a professional, getting on medication, or both. It may also be learning different ways of coping such as cognitive behavioral therapy, meditation or yoga.

I’ve realized that sharing can be detrimental

I go back and forth about whether or not to share my personal experiences with other people. When I first immersed myself in the IBD community online, I was in a ton of closed groups and would follow a lot of facebook pages as well. Whenever someone asked about a medication or type of therapy, I would jump at the chance to share my own experiences. Until I started realizing how detrimental it could be.

I would look at some of the questions people posted like “My doctor just prescribed prednisone. Anyone else on that? What have your experiences been?” and feel sorry for the person asking.

As you can imagine, there are about a million ways to respond to that question but most of the responses aren’t going to be positive given all the side effects associated with the steroid.

Each situation is unique

The person was obviously very sick, confused and looking for guidance. However, with a chronic illness like Crohn’s Disease or ulcerative colitis, it is so important to understand how unique we all are. It is also so easy to get scared when you hear other people’s experiences with some of these medications or surgeries.

This led me to wonder if it is a positive thing to share our medication experiences with other people. On one hand, I do understand it can be comforting if you have something positive to share. But on the other, hearing a lot of scary stories about something you are already unsure about can cause a lot of mental anguish.

I started thinking about this topic a number of months ago when someone close to me was going through a mental health crisis. He is someone who has never needed medication a day in his life and therefore, has really no understanding about anything in the medical world. Some of the medications he was being prescribed were things I have tried. I would go back and forth in my mind about whether to share that with him.

Ask around, but know your own body

It is very normal to ask other people about things we aren’t sure of. And in today’s society making it that much easier to reach the masses, it seems like you aren’t doing your research if you don’t ask around. However, it is crucial to understand that your body, mind, and disease are completely different from anyone you know. If you trust your physician and he/she is telling you to try something, my advice is to focus on you and only you unless you have serious concerns outside of what others have told you.

I know none of us want to scare anyone out of a treatment option that could help someone. I also know that when we do share a negative experience, a lot of times it is because we want to save someone else from going through the horror you have had to endure. In terms of sharing your experience with others, I would highly suggest that you be mindful of who you are talking to and just how much that person “needs” to know.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • Amanda Osowski moderator
    10 months ago


    This is a great post. I cannot echo your sentiments enough – that advice and guidance can be helpful, but each body reacts/interacts to things differently and only we know our own systems best.

    Thanks for posting!
    Amanda (team member)

  • thedancingcrohnie moderator
    10 months ago

    Agreed. Social media and sharing medication experiences is a slippery slope. I often see that question a lot “hey, I’ve just been prescribed Prednisone, what are your experiences?”

    Of course, those of us veterans cringe because we know how hard Prednisone can be, but I put myself in that person’s shoes and I definitely would not like to be greeted by some horrific story. It would just make me so anxious.

    I think if you are going to give advice or experience, the wording must be tactful and educational. Mostly just helpful! We must help each other, not add to the negativity and anxiety.

    Always dancing,
    Elizabeth (team member)

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