Had to post this. At times over the course of my life, I’ve been told by well meaning friends and relatives, that my illness is all in my mind, I’m stressing over nothing, I’m strange because I stay to myself, I use sickness as an excuse to stay home… and these are some of the nicer comments. In the past it’s been difficult for me to explain how I feel because I didn’t understand most of my symptoms. I was also having so many different symptoms of several different medical problems. All I knew for sure was that food, people, preparing to leave my home for any reason, made me feel sick or anxious to one degree or another.
As outgoing and crazy as my friends know I am capable of being, I’m equally if not more introverted. Although UC is not responsible for all of my social behavior, it does play a significant role.
As a singer, I’ve toured with several artists to different countries. I was always the one that stayed in my hotel room while others went site seeing on days off. As as music producer, I spend long hours in the studio with a focus on guiding vocalist and musicians through the recording process. I’m not in a position to get a ferocious attitude about the fact that I don’t feel good and can’t let on that I’m in pain and I definitely can’t go running to the bathroom in the middle of what could be the best performance of the recording session. So you just work sick, especially if you wanna keep feeding yourself and your family. When you can’t work, it’s devastating. Been there.
That being said, here’s some info I found online that I hope will be helpful to anyone who has a loved one, friend or associate who suffers from UC, but you’ve decided they’re just strange and a little mentally challenged.
From The Chrones & Colitis Foundation Of America
“Because body and mind are so closely interrelated, emotional stress can influence the course of ulcerative colitis — or, for that matter, any other chronic illness. Although people occasionally experience emotional problems before a flare-up of their disease, this does not imply that emotional stress causes the illness.”
“There is no evidence to show that stress, anxiety, or tension is responsible for ulcerative colitis. No single personality type is more prone to develop ulcerative colitis than others, and no one “brings on” the disease by poor emotional control.”
“It is much more likely that the emotional distress that patients sometimes feel is a reaction to the symptoms of the disease itself. It is not surprising that some patients find it difficult to cope with a chronic illness. Such illnesses seem to pose a threat to their entire quality of life-their physical and emotional well-being, social functioning, and sense of self-esteem. People with ulcerative colitis should receive understanding and emotional support from their families and physicians.”
“Coping techniques for dealing with ulcerative colitis may take many forms. Attacks of diarrhea, pain, or gas may make people fearful of being in public places.”
“No one with ulcerative colitis should ever feel alone. As you go about your daily life as normally as possible, try pursuing some of the same activities that you did before your diagnosis. Some days, you may not feel up to it. Other days, you will want to give it all you’ve got. Only you can decide what’s right for you. It will help to follow your physician’s instructions and maintain a positive outlook, and to take an active role in your care. That’s the basic (and best!) prescription.”
For more info, check out The Chrones & Colitis Foundation Of America
PATIENCE
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I can truly sympathize with you. I have been a Crone’s Disease sufferer for 18 years now. I know how it is to feel the feelings that you have described. This disease plays with so much of your life and there are so many reasons to find yourself falling into depression. Just when you gain your weight back and you feel like you are getting as close to normal as possible, your body does a 360 and reminds you that you are sick. People ask you about your illness and you get too embarassed to tell them the details so they assume that you are playing it up. I have tried every medication there is and none are working as of yet. I am going to be trying a newer medication which I will have to inject myself in the stomach as my body has decided to reject the remicaid infusions. It is very frustrating. And when people learn that the disease is brought on mostly by stress, people assume that it is all bad stress. But, that is not the case. You can be excited about something and that triggers it too. Stress in a body is not all that people think that it is. It is all changes in moods, whether you are so excited or so upset. It is all the same to your disease. I dread travel as there is always a small flare up that is associated with it. I cannot travel well. I try to do what I was advised to do, do not let things get to you…hello…I would have to be dead. Life is not always easy and you cannot always take a step back to evaluate a situation and calm yourself down. It is only human to feel the sadness, the glory, the let downs, the accomplishments, your reaching of goals. But all of these feelings can make you sick. You cannot go out to eat with anyone unless they have a bland diet and you are prepared for the next day of doing absolutely nothing. I know how you feel and I am sorry. But, please let me tell you that you are not strange.
Paula, thank you so much for that. I know you understand! I’m in remission for the most part right now and I stopped taking all the meds even before I went into remission… I just got tired of all of the side effects and after my “mild stroke” incident with the prednisone, I just decided to get off of everything for a minute. I’m still in the bed a lot but not in pain all the time anymore. I get out when I need to and I stay home when I need to. Mind you my income is suffering horibly as a result but I don’t know which is worse, feeling sick from all the side effects or this. I had more success recently with just my sheer willpower than anything else… I just don’t know what else to do. So, I’m taking it a day at a time now and getting through most of the days better than I was thank God. I do flare up if it’s too much going on or under stress, but it just doesn’t seem as bad as it was. Anyway thank you for insight and for understanding that I’m not strange and you will be in my prayers that the quality of your life improves and your pain decreases.