Chronic Illness and Feeling like an Outsider
Caring for my son with Crohn’s disease
I am on the outskirts of my community. My days revolve around my son Lowell’s state of health on that particular day. He is 15 years old and has severe Crohn’s disease with many complicated issues. Every morning begins with me proceeding to wake up my 2 boys in 10th and 12th grade for school. This in itself is a lot of fun, as anyone with teenagers knows. The 12th grader eventually gets himself out of bed, and when I go into Lowell’s room to rouse him, I never know what I will find. It is quite typical for him to wake up with cramping stomach pain ranging from mild to severe. There has not been a day in the past 3 years that just the fatigue alone potentially prevents him from being able to get out of bed. But here’s the thing, he wants desperately to get up, drive to school with his brother and not have to call me within a few hours to come pick him up.
People hear about Crohn’s Disease and ulcerative colitis which are Inflammatory Bowel Diseases (IBD), but many don’t understand or realize how serious these autoimmune diseases are. I recently read an article in a gluten free focused magazine about someone who was diagnosed with Crohn’s, was really sick for years, then decided to stop eating gluten and was “cured.” Yes, perhaps this particular person got better with this diet, but my reaction to it was “yet again, this is why there is so much misinformation about these diseases.” I will say it over and over, not eating gluten will not cure IBD.
It gets frustrating to cope with the things I hear and see about these diseases when I am living it on a daily basis. On an hourly basis. I am making difficult decisions all the time about serious medications that have potentially devastating side effects. I am reading about the Specific Carbohydrate Diet, Gluten Free diet, Vegan Diet, FODMAP diet, etc. and struggling to decide which one we might try. Worse, I am struggling with my son trying to convince him that one of these diets “might” help. Then the time consuming research about how to do the diet, and the shopping, cooking, and cleaning. Stay tuned for my posts about feeding my family that isn’t your typical food blog of beautiful pictures and little vignettes about sitting down to easy, wonderful home cooked meals that everyone in the family enjoys because well, it is just not easy at all to feed my family. My 18 year old has Celiac, and my 15 year old with Crohn’s has some food restrictions and allergies, 2 members of our family are vegetarians, and of course we all have things we like to eat and not eat. But that is a whole other topic which I will get to in another post soon.
My friends invite me here and there and I love that they still do (though for sure it has decreased since I have to say no a lot) because yes, I need a break and I think I am still fairly engaged in my “other” life. But in the past 3 years since things have been pretty difficult for Lowell, my life has drastically changed. Friends have moved to different stages of life as their kids have grown older, and become less dependent on them. They no longer have to worry about leaving their kids home alone or even make plans around what their kids are doing. But here, Lowell is still home, in pain or tired most days, and would you want to go to dinner or a movie with your husband or friends knowing your kid is home alone not feeling well and might potentially need to say, go to the ER for fluids or pain management? Sometimes we ask our older son to stay home with him but that is also not ideal. He’s 18 and should be able to do the things he wants to do with his friends.
Family vacations have been mostly sidelined because it is scary to travel and not know where the closest reliable medical situation will be. Will my son and thus the rest of us be able to enjoy the trip if he is not up to doing things? Oh, and remember those food issues? They make traveling much more challenging.
I recently heard Jami Lyn Siegler, the actress from the Sopranos who decided to reveal that she has had MS for 15 years, being interviewed on TV and she said something that is so true which was “when one person in the family has a chronic illness, the whole family has it.” All the medical complications my son has been through, countless procedures, surgeries, hospital stays, travelling all over the country to see specialists, and on and on, have insulated my family and in many ways brought us closer together. But like any difference -race, ethnicity, economic — that makes you a minority, chronic illness, too, can make you feel like an outsider.
Stacy J. Dylan www.connectingtocure.org
