Are you a chronic illness warrior? I am. I have battled chronic illnesses my entire adult life. At 18 when I started college, by November of my freshman year I was already suffering from what would later be diagnosed as Crohn’s disease. Through the years I “acquired” diagnoses of POT syndrome, fibromyalgia, PTSD, arthritis, bilateral hip bursitis, and sciatica. Probably more I’m not thinking of at the moment. Here are 5 things to remember if you have chronic illness.
You are not your illness Whatever your chronic illness may be, you are you and it is it, but you are not each other. You are not your illness. It is a part of your life now and you must deal with it, but it does not define you. It may sure feel like it runs your life at times, but it is still not your identity.
The illnesses are unreliable, not us I feel unreliable much of the time. I’m late more often than not. But it’s not because of poor planning or me being disrespectful of time. It’s that Crohn’s slows me down and many times I’m just about out the door when nature calls (more like screams) and I have no choice but to answer. And then I’m late. Sound familiar?
You have a right to demand proper care It’s hard to fight for what we need, especially from a medical standpoint. Those of us with chronic illnesses are often looked at as drug seekers if someone needs pain relief often. Or we are disregarded as alarmists or complainers or if we have PTSD, it’s “all in our heads.” It’s extremely demeaning and frustrating. These illnesses are real. We are human beings who need proper care. Fight for it.
Your relationship with your doctor should be a partnership I have had some wonderful, attentive doctors over the years. I have also had some docs who have an “it’s my way or the highway” attitude. The latter refuses to think outside the box, to consider me a unique human and not just a a disease from a textbook, and won’t consider anything that I research. They don’t even have the curiosity to research a new treatment or diet I bring to their attention, even if it they have impressive studies to back them up.
If that’s what you have, find something else. I recently called the office of a new specialist and told them exactly what I need in my doctor. It was imperative that I have one who views us a partnership and will find treatments we can both be comfortable with, not just what he or she wants. The receptionist assured me I would find this in their practice. I’m looking forward to that first appointment.
Your experiences are valid This isn’t against doctors or the medical field. There are many amazing providers. But we’ve all had our experiences where we didn’t feel heard, seen or cared for by our professionals. Share you stories if you feel you can. Talk about it to your new providers (don’t stay with ones who are causing the above), share in support groups or wherever you feel comfortable. When we talk about our stories, it raises awareness. High awareness breeds making changes.
According to a quick internet search from NIH shows there are 133 million Americans who battles chronic disease, more than 40% of our American population. And that’s representative of one country. Imagine the number over the entire world. That’s a lot of us! But they are chronic which means doctors are seeing millions of us with a variety of issues with varying severities. And we are not going away.
Fight for what you need. Fighting for ourselves and our medical needs, paves the way for others to be helped too.
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