My Invisible Illness is Real

Most people who have an invisible illness (a chronic medical condition that shows no outward signs) have experienced these words at one point and time: "But you don't look sick." These words can be extremely frustrating. I often ask my clients, "What is the most difficult thing for you about having (Crohn's Disease, ulcerative colitis, IBS…)?" I can't tell you how many times I have heard the answers "It's hard to talk to people about what I'm going through because they tell me I don't look sick", or "My family doesn't always believe how bad I feel because I don't look sick", or "I've been told it's all in my head". I could go on. This is one of the difficulties those of us with chronic illnesses need to learn to overcome. The idea that people don't believe us because they cannot see our illness like they can see someone in a wheelchair or a like they can hear a chronic cough can feel isolating and depressing. Sometimes it can make us feel like maybe it really is in our heads. Maybe we aren't really as sick as we think. Instead of giving in to this, we need to fight back! Understand that these people aren't saying these things to be insensitive. They just don't get it. So educate them! Explaining to them what you are going through and why you don't look sick will not only educate them on something they are unfamiliar with, it can be empowering for you too. Also, trust yourself. You know how you feel. You know your illness. You know that it is not in your head. It is real.

The Psychological Epidemic in Patients with Gastrointestinal Diseases: Help is Needed for Patients Suffering from Suicidal Thoughts, Depression, Stress and Anxiety

I don't know how many of you have read about the suicide of Aaron Swartz. While their may have been many factors that lead to his decision to take his life, many of the articles written about him mentioned the fact that he had ulcerative colitis and that this may have contributed to his depression. After I read some of these articles I couldn't stop thinking about it. I decided to put my thoughts into words. Below is the link to an article I wrote about the psychological problems many people with gastrointestinal problems face. While suicide is a drastic measure, it is not unheard of.

If you cannot open the link directly, please copy and paste it into your browser.

http://voices.yahoo.com/the-psychological-epidemic-patients-gastrointestinal-12196127.html?cat=5

Rollercoaster of Emotions

Last Friday I had my annual flex sigmoidoscopy to take a look at my J-pouch. After a whole year of doing fantastic and feeling great I went into this appointment a little nervous but very confident. So after two hours of waiting (no fault of my doctor’s but still very annoying) my nerves kept building. Throughout the exam everything was looking great, until the very end when my doctor found a small piece toward the top of the pouch that was a little inflamed with a small ulcer. One ulcer. Upon seeing that my mind started racing and I started freaking out inside but remained calm so my doctor wouldn’t think I was a crazy person. After he took a biopsy and I got my pants back on, I asked him “what could it be?”, “is it Crohn’s?”, “when will the results be back?” After giving me a smile and trying to calm me down a bit he told me that he didn’t know what it was, it could possibly be Crohn’s but he didn’t think so and not to worry (REALLY?!), and that the biopsy results should be back within a week or two.


So since Friday morning I’ve been able to think of nothing else. I’m trying to remain positive, but having that camera up my butt again and seeing an ulcer again has really played mind games with me. It’s brought back that whole flood of emotions that I felt when I was sick with UC and while I was going through my surgeries. The thing I’ve realized is that those emotions and these experiences will never go away. Even if the results come back and it’s not Crohn’s , this is something I’m going to have to go through every year when I have that exam. The nerves beforehand and the praying to God that nothing shows up during the exam. So it makes me think. For those of us who have had J-pouch surgery as a “cure” for UC, is it really a cure? Possibly it is a cure for the actual physical ulcerative colitis (although not always for those who find out after that they really had Crohn’s all along, or the small percentage who have complications after the surgeries). But emotionally, having these surgeries is definitely not a complete cure. It is something that will always be with us. Those emotions, those memories, that fear. I’m not saying I wouldn’t have had the surgeries. Not that I had a choice, but if I had, I still would choose to have them and I would still recommend them to anyone. They saved my life and gave me a better quality of life. For that I’m definitely grateful. I guess I’ve just realized that for most people it doesn’t end once the surgeries are over. It’s a process. Which is why I think it is so important to take care of yourself both physically and psychologically, during the illness as well as after. I think it’s also the reason I’m so passionate about counseling people with IBD…because I GET IT. And you can’t get all the emotions and fears unless you’ve been through it. So for now, I’m going to do some of the things I tell my clients to do…try and remain positive, deal with my emotions, and since I’m feeling good, enjoy life…and pray that the ulcer is nothing.