The 'Positive' Comments That Don't Help When You're Chronically Ill

When I was in high school dealing with my Crohn’s disease flares, my mom would always tell me, “There’s a reason for everything,” and remind me to, “Just think positively.” I listened to her because that’s what teenagers did; we listened to their parents. When I was in college, my mom and her friends would say the same thing over and over, “You need to relax,” and “You shouldn’t worry about this,” or “Be positive,” and “You’ll feel better.”  Again, I listened to their words. But how can I be positive when I’m in a great deal of pain? How does that help me when all I wanted was support and understanding?

Now that I’m much older, I’ve been diagnosed with more health issues ranging from post stroke deficits, migraines, venous insufficiency, migraine vertigo, mitochondrial cytopathy and mild coronary artery disease. Most of my friends will listen to me vent about how I feel and tell me they wish I’d get well soon. They tell me that I’m a strong person and they say they believe in me. They also tell me that I’m in their daily prayers. One of my friends will even ask if they can do anything to help me. That’s validation in my eyes because they understand what I’m dealing with. They give me validation that it’s OK to express my negative feelings when I say, “I’m feeling lousy,” and “I wish I was normal,” or “I’m tired of all of this.”

To tell me to just “get over it” or “be positive” isn’t really helpful. I can’t “get over” my illnesses or “be positive” that the pain caused by my chronic health issues will just magically go away. The pain is very real — it hurts…it’s debilitating. After it is gone, I’m very tired as my body’s been fighting the discomfort and inflammation. I am not babying myself when I say that I need to rest or take something for my discomfort; that’s the game plan my physicians and I have come up with to keep my symptoms at bay. I know when to seek immediate medical help and when to try other methods at home.

I also don’t like to be blamed for how I feel. By saying, “It must be something you ate or drank, ” or “You worry too much,” makes me feel that your overall opinion of me isn’t a very good one. And it makes me feel that if I don’t do what you suggest, then it’s my fault for being the way I am. And those feelings aren’t something I need. How would you feel if you had a very bad headache, for example, and I said, “Get over it,” or tell you “You must have done something to cause it.” I’m sure you would not be very happy.

Patients like myself truly appreciate the support of our family and friends.  By realizing that my illnesses are something that I just can’t control, is a step in the right direction. If you are unsure of what to say, just a simple, “How are you?” or “Can I do anything for you?” works well. Those questions don’t put me on a guilt trip or won’t sugarcoat how much pain I’ve been dealing with for days on end.

I’m not trying to be nasty or rude to my friends and family. I truly appreciate everyone being there for me, and I know they mean well.  I’m just trying to help everyone understand what it’s like to live with pain that I can’t control, as well as the side effects from my health issues. If there was a way that I could get rid of my discomfort, trust me I’d be the first in line to get the antidote.