Hi everyone,
I just wanted to put this down as it is important for
all of us to remember as members in this community.
While we are all connected through our affiliation with Inflammatory Bowel Disease in some way, we all have a different experience with it. There are not even simple categories that can organize us all, as the amount of experiences ranges so heavily. There are some of us who have had this disease undiagnosed for a long time, but only recently have been diagnosed, those who have been diagnosed for many years and those who are recently diagnosed. There are some of us who are not even sure if they are diagnosed yet. As anyone who has read several of our
personal stories with IBD knows, know two experiences are exactly alike.
So that is why it is important to remember a few things whenever you post, whether asking a question, providing an answer or any other reason.
First some tips everyone should keep in mind:
It hurts to stub your toe. It hurts more to break your toe. That does not mean the first person has not experienced pain themselves. It is important to remember that everyone is different in what they have dealt with in this disease. Some people may be worried about having their first colonoscopy while others are worried about their 4th or 5th surgery. Both worries are a big deal in the minds of the individual, and it is never comforting to hear someone say something along the lines of deal with it or I have had to deal with much worse. I do not think it is wrong to point out a person's misconception regarding something (like overall a small bowel follow through or barium swallow is definately worth it if you are going to get a diagnosis and treatment plan), but it is important to remember we are all at different stages with this disease and all experiences are something new and difficult to deal with for many. It is important to not brush everything off as "not a big deal" when it is for a person. Obviously this is something that should be used when this is in fact the truth (like with going on some medications like Pentasa), but it should not be figuratively shoved in a person's face or to make a person feel bad for worrying about something. Especially in the support sections where people may be looking for some support even if they know what they are going through is a normal procedure or occurence, try to by empathetic.
Those of us with more experience with this disease have likely done a lot of personal research or (unfortuantely) have a lot of personal experience with the different aspects of this disease. While there is no doubt that your wisdom and advice are appreciated by others on the forum, it is important to remember that the people your are helping are at a different stage with their disease then you are. I am not talking about the severity of the disease (which is always important to keep in mind) but rather where they are in coming to grip with the fact that they now have this disease. Most people likely know very little about their disease, and they are frightened at first diagnosis. We all know those initial questions and fears running through our heads, and we often have no one to turn to for help and wisdom. That is why it is important to really try and remember what it was like to be in that stage of your disease, and be supportive and helpful to individuals. While some people may ask a series of impossible questions to answer all in the same post (how will this medication affect me? When will it work? Can I eat this food? Why do I have these symptoms? etc.) it is important to be patient with these people. There is nothing wrong with telling someone that they are asking questions that no one has the answer to, but you can try and let them know if these were questions you once had yourself and either how you learnt to deal without having the answers to these questions, or how to best determine what is right for a person. For example, with regards to food related questions I often recommend a person keeps a food diary, so they can determine how different foods affect them. This can really be done for medications to, as a person can right down how they are feeling each day and what symptoms they are having based on new medication changes. This is best seen in Kev's recent posts with his personal
Prednisone Diary.
It is also important to remember what it is like when you are really down or depressed about your disease and your current situation. Those who have been there and have been out of that situation know that it is not a good place to be in, and would know it is not always helpful to just recommend to someone that they need to stop thinking so negatively. I think it is important for all of us to remember that such bad feelings are likely not going to go away when being told by someone else to "stop being depressed" or that changing our thinking will be enough to make us feel better. That will likely just make the person feel worse, as this is what they are hearing from other people in their life and they are posting here to find others who can relate to what they are saying. It is important that people realize when they are not taking the right approach to their disease or attitude, however when people post here they are mostly looking for a way to relate what they are going through with others. A procedure we have never heard about before can sound very scary, but it helps to read some posts here to learn what others went through with it and to learn some things that are not always told to the patient by a nurse or doctor.
So what I ask all of you to do is try and relate to a person as best as you can and let them know if/when what they are posting is something you have experienced yourself. In the case with feeling bad or depression, this is most important to know the feelings are normal. From there you can give your recommendations (how you got out of the feeling bad in this case), but first take the time to connect with the person to let them know they are not crazy or different. While this disease is different for most people, we all seem to go through many of the same feelings and worries. It is important to know this, especially when you are new to this disease and feel so different and isolated.
For those of us here who are here to learn more about this disease or who are newer to it in general, I hope you see this place as a friendly and supportive community. That is the mission of this Forum, and at any time you feel this is not the case I encourage you to give me a personal message at the forum or e-mail me.
We are all hear to help each other, but it is important to realize we do not have all the answers. We do not have any medical knowledge that can not be found elsewhere or know what will work for everyone. We all have our personal stories and experiences though, which we will share with you. But what works (or does not work) for us does not mean it will be the same for you. While there are many foods that affects most of us negatively, this is not the case for 100% of the IBD population. So please understand that we can not answer questions with 100% accuracy that deal with how you will react or be affected by certain changes with your disease and its treatment.
Many of us also did not have access to a community like this when we were first diagnosed with the disease. Some of us were diagnosed before foundations like the CCFC & CCFA were as organized as they are today. So while we encourage you to ask questions and seek help, we also encourage you to do your own research. There are many books written on living with Crohn's Disease and Ulcerative Colitis. The internet also has a plethora of information, so use this resource to your benefit! It is vital to realize that not all information is factual, and some of it is written with the purpose of promoting other products (books/products,etc.). This is a place to learn more about this disease and everything related to it, so feel free to post something you have found and we can all discuss it. Remember that this community has a lot of previous discussion on many topics, so be sure to look through this material to learn about others experiences with the disease or learn more about different topics. The search function of the site is very helpful, so I recommend using it, especially before asking a question that may have been asked before.
Overall this is a community where you should feel comfortable posting at, so all rules or recommendations we make centers around the premise that we are all equal members here. I am ALWAYS willing to receive messages from members, whether its compliments (which I will never say no too
), criticism, suggestions or anything else. If you have a question you are not willing to post publicly, feel free to ask me personally (I don't know everything, but at the very least I should be able to direct you to some helpful information) or post it in the support forum. Posting your story in the Your Story forum is also recommended, as you may be able to meet some friends there immediately who have been through something similar to you.
The new members, old members, wise members and inexperienced members are all equal members of this community. I hope this has helped you all be more supportive and effective members of this community. If you have any other suggestions for all members to remember please post them below so that we all can remember your advice when posting here.
Thanks for reading and let's continue to keep this the most supportive and informative IBD community on the net!
