I Am Chronically Ill, but You Stayed
I remember hearing, “You’re a faker,” so many times over the years. I remember hearing it from friends, family and even doctors. One doctor in particular, a pain specialist, chewed me out over the phone. He said, “It’s people like you who take pain pills and then drive! You probably don’t even need them!” I couldn’t breathe. I felt like I’d just been slapped in the face – and hard.
Everything that I’d been told by other physicians, everything I’d learned and everything in my life was screaming, “This is wrong!”
What this particular doctor didn’t know was that I didn’t drive. I refused to drive because of the hydrocodone I was taking at the time. I needed the pain medication because I was waiting for a microdiscectomy, and the pain was excruciating. It was turning walking into a nightmare. What he did know was that a driver who was using pain medication illegally had just driven into an urgent care clinic locally. The driver was under the influence and driving without consideration for the lives of others. The reality of my request was that I was asking for a refill. There wasn’t anything abnormal about it. The abnormality came with his vicious and unwarranted outburst.
This would not be the first time this sort of thing happened.
Over the years, I had several people come up to me and, over the course of the conversation, attempt to placate me, “help” me, and eventually, verbally accost me to the point of driving me to tears before completely disassociating themselves with me. All of this was done for one reason: I believe all of this was done because they liked the idea of me, but they didn’t like me.
When I met my husband, I was certain that he would, at some point, do the same thing. So, I approached things differently with him. I immediately told him about my conditions – my fibromyalgia, spinal diseases, depression, post traumatic stress disorder, and my anxiety. I told him that I have good days and bad days. I explained that on those good days, I tend to overdo it without consideration for the minimum two weeks of bad days that would follow. I told him that I get sick very easily. Where a cold would usually last a week with a healthy person, they last anywhere from two to three weeks with me. I told him that I have days where all I want to do is sleep. I’ve slept for 18 hours straight before, and for no visible reason. I told him that I had self-esteem issues due to the added weight I’d gained. I told him that I would often have to cancel plans due to unexpected sickness. He listened to me adamantly…And then he broke up with me.
We were apart for almost a week when I got the call from him. We talked for a long time. He told me that he’d made the decision because I was chronically ill and probably wouldn’t be able to keep up with him. Infuriated, I told him that it wasn’t his decision to make. From that day on, we agreed to be completely honest with each other and not make any rash decisions without discussing them together.
We’ve been married for three years. Friends have come and gone. Some have bailed because they couldn’t handle me getting sick so randomly and often. Some have bailed because, according to them, I was “depressing” to be around because I couldn’t partake in most of their more physical activities. Some have left because they thought I was faking my conditions. I don’t think they’ll ever really understand what chronic pain is unless they experience it themselves or marry someone who lives with it.
But, the ones who stayed are the ones that are the most important. They haven’t given up on me. They still invite me to events. They don’t yell and become hurtful because I inevitably can’t attend or partake in the event. They understand when I’m having a bad day. They admire my husband for helping me on those days and have seen that we are actually closer because of the trust required. To those people, I say thank you. You have continued to be here for me to the best of your abilities and not give up on me. You have helped me to see that maybe, just maybe, all of those people who made me feel useless were wrong. You’ve helped me to see that not being OK is OK.
You will forever have my thanks.
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