Thoughts from the hospital

So I have been in the hospital for two days. I am so bored!!! In the past few months I have had numerous people mention that they don't know how I do it. How I stay strong and continue to have a positive outlook despite the myriad challenges I am faced with on a constant basis. My typical response is "I have no idea!" But really, I adopt the notion that I don't really have a choice. What I mean by that is my only choice, in my mind, is to attack this disease head on with all the positivity I have inside me in order to persevere. We all have difficult life experiences and we are unable to control what happens to us. What we CAN control is our reaction to each event. We can make a conscious effort to react utilize our strengths and adopting a positive perspective. This doesn't mean I am positive all the time, nor am I promoting this. It is impossible to stay positive ALL the time. We are humnan. There are definitely times when I become disheartened, irritated, bitter at the world becasue I am forced to deal with this disease. I feel so incredibly lost because the "me" that I used to be is aligned with the "me" that I want to be. Therefore, there is a strong disconnect between the me I am now and the me I strive to be. Therein lies the problem. It is impossible for any of us (whether we are struggling with Behcet's, another medical condition, mental health issues, etc) to not change as a result of the disease that plagues us. Life changes us. It has been difficult for me to not only accept thesse changes that I have to make to myself and my identity, but also a challenge to alter my life accordingly.

I have heard from a few people from all over the world within the past day and let me tell you I am ecstatic about it!!! One of my main goals for starting this blog was to make connections with others who are struggling with Behcet's, as I have never spoken or met another individual with it. It is difficult to discuss what is going on with others who don't really understand. As much as they try, it is so hard for them to imagine what it is like unless they have been in our situation. Therefore, I thank those of you who have read the posts and commented and/or emailed me directly. I think we should all stay in contact. I am thinking of starting some type of group Facebook page just for us, or some kind of chat room, group chat, etc. That way we can provide support for one another. The social support we receive from those who know EXACTLY what we are going through proves invaluable. It will help us cope on a daily basis knowing that we can call one another and talk openly about what's going on without filtering. I know many of you have agreed with me on this fact: having to hide our true feelings about being sad, in pain, etc. because we don't want others to worry about us. We are trying to stay strong for others, when really we need to stay strong for ourselves. Many of you whom I have been in contact with have significant others, families, etc. I struggle because I don't have a significant other, and this is something I have wanted since I was in college. It is so difficult to date with a chronic illness. I have heard others state that it is almost like we have to introduce our disease like it is a separate person.

I really want to keep the lines of communication open so that we can support one another!! I want to utilize this blog as a home base of sort to interact, ask for help from others, help answer one another's questions, etc. I think it will boost our spirits to have our feelings validated. Too often our families, in trying to help us, try to make us happy and cheer up. We need to give ourselves permission to express our negative emotions. It is unhealthy to repress them or deny them because the feelings tend to build up. Finding adaptive ways of coping is extremely important to our level of functioning. In order for us to strive to be the best person we can be, we need to adopt healthy coping skills. I will discuss this in detail in another post.

I feel like I have a very unique and helpful viewpoint since I have my doctorate in Clinical Psychology and I am also dealing with Behcet's Disease. I know a great deal about human thoughts, behaviors, and emotions and how these three facets are intertwined. I would love to offer psychoeducation through some of these posts.....meaning topics related to mental health that relate to dealing with a chronic illness. Examples include anxiety and fears that stem from our diseases, coping skills, expressing emotions in a healthy manner, communicating with others in a healthy way, setting appropriate boundries, dealing with depression, finding our new identites, etc. I would love to hear your thoughts/ideas for potential topics. If you have an idea, please contact me directly at my email address: mandifessler@gmail.com. Or, post a comment to this blog post and we move forward from there. I love hearing your stories and I have found that most of us have had similar experiences. I look forward to hearing your ideas and getting to know all of you more. If you feel comfortable, please introduce yourself to those who are reading the blog and share a little bit about yourself (only whatever you feel comfortable sharing.) Plese don't hesitate to contact me if you want or need to chat, need some advice, or need someone to just listen. I don't mind skyping or contacting you via phone.

I am looking to get into motivational speaking. If any of you have any places that you think having me as a guest speaker would be beneficial please let me know. I am also in the process of starting a book about living with Behcet's Disease. I am thinking of using your stories in the book, with your permission of course. We can also discuss that further, should you be interested in becoming a part of that.

Thanks for reading! I hope you all are feeling okay and are somewhat happy!!!
I look forward to hearing from you soon.
Take good care,
Mandi :)