Isolation

I don't know if people really comprehend how isolating it is living with a chronic illness. When you cannot immerse yourself in work, social activities, personal life, etc. it is extremely difficult and taxing. The stress created from the inability to engage in these normal activities exacerbates symptoms thus creating a viscious cycle. I am alone all day long because my mom is at work. I sometimes talk on the phone, but basically I am alone with my thoughts. That can be dangerous as you can start thinking negatively and can quickly head into a downward spiral. Negative thoughts can be very detrimental to our psychological health. Since our mind and body are interconnected, our thoughts affect our emotions and behaviors. Our thoughts can also influence our physical health. Many people cannot handle being alone as it is, but add a chronic illness into the mix and it is even more difficult. It is scary, too. I never know if something is going to happen where I need to go to the hospital. I remember in December when I was taking Imuran and it caused acute pancreatitis.....I went into the kitchen around 7am....My mom was getting ready for work. I felt a slight pain in my abdomen directly under my ribcage right in the middle of my stomach area. It kind of felt like I pulled a muscle. I went back to bed. I woke up two hours later and was in EXCRUTIATING pain. I had no idea what was going on. I immediately called my doctor and he told me to take a liquid antacid and if that didn't help to call him right back. I was unable to go to the store to get the medication myself because I literally was paralyzed from the pain. It was the worst pain I have ever felt in my entire life. It was extremely uncomfotable as well, feeling as though I had a bowling ball in my stomach. My mom left work and went to the drug store and brought the medication home. I was on the phone with my sister the entire time because I was so scared and the pain was so bad. She and I were trying to determine the cause of the pain. We thought maybe gas, but I know that gas pain would never be that severe. I have a pretty high pain tolerance so I would be surprised if gas pain hurt that bad. We thought it could be appendicitis or possibly gall stones. But we didn't know what to do. Thank God I had her on the phone with me to calm me down. I was screaming in pain. She knew something was severely wrong but didn't want me to worry. So she told me stories and tried to make me laugh. My mom came home and gave me the antacid. She told me to drink some water, sprite, eat a cracker, walk around. Nothing helped. In fact, it only got worse. I yelled to my mom to take me to the hospital. I couldn't get there fast enough. Driving in the car hurt so bad, every little bump in the road or turn caused horrible pain. When they wheeled me down the hall in the wheelchair, that caused severe pain as well. I remember screaming in pain and being hunched over. Everyone in the waiting room was staring at me, and I couldn't care less.

The doctors ran tests and determined that I had acute pancreatitis. I was admitted for a week. My point is you never know when something will happen that will necessitate immediate medical attention. Behcet's Disease is so unpredictable that one minute you could be okay, and the next something is happening and you need to go to the hospital. This causes extreme anxiety. It makes me avoid travelling at times and doing things that I would otherwise not be afraid to do. It is a real concern too, not something that is made up. I am sure that others with chronic diseases can relate to this.

How do you all deal with the isolation caused by chronic illness? Even if you have a husband or a boyfriend or family, do you still find that you can be socially withdrawan or isolated? What do you think causes this isolation? I think that the mere fact that others cannot relate to my experiences can cause isolation. Also, it can be uncomfortable being around people when you don't feel well. You don't want to talk if you don't feel well. For me, my mouth sores can be so painful that talking is out of the question. It is hard to hang out with friends and just not talk. Therefore it is easier and more comfortable to just be alone. Please share your experiences with isolation with us! I want to know what you do to decrease feelings of isolation. Let's talk about this....it's an important topic that should be addressed!