Why I'm Afraid to Talk About My Chronic Pain

I don’t “look disabled.” Most of the time. Unless the weather’s gone wild (and I live in New England, so that’s only an afternoon away) or I’ve somehow injured myself, I usually look like a healthy woman. Heck, I don’t even look my age – no one believes me when I tell them I’m over 30. While I won’t complain about the fact that most of my symptoms are clandestine enough to not warrant attention, it makes discussing my disability challenging, at best.

Because I don’t look the part, and because I so often push through my pain with a smile plastered over my face, it’s easy for people to discount and disbelieve what I’m saying when I tell them how much pain I’m in. I mask very well, and it’s born of having a life where I needed to. I didn’t have much of a choice, since I couldn’t really show my pain to the world. I also didn’t want to, since with pain comes attention, and I really hate that kind of attention. I don’t want it. Most of it comes with a “you poor thing” sort of feel, and I don’t want that at all.

In addition to that kind of attention (and often with it) comes this sort of feeling that I am somehow lesser because of my disability. If they believe me at all. And that’s a big if when my overt presentation of the conditions I cope with is well-hidden. The fact that I’m laughing doesn’t mean I don’t feel like my head is trying to tear itself apart with a migraine. Heck, I went out with my best friends to a midnight screening of “Doctor Strange” and laughed my whole way through it while simultaneously in the worst pain of my life. During that showing, my spine was out between my shoulder blades, and every breath, every wrong move and every turn of my head flooded my body with agony. On the one-to-10 pain scale, I sat at a solid nine, and I had been there for nearly a week. My friends knew how much pain I was in, as did my husband, and spent the whole time keeping me giggling. It helped, though I spent most of the movie wondering if I needed to leave and go to the ER for some kind of pain management.

 

So many people, when they learn of my limitations, give me the eyes and a sort of “how sad for you” feeling. Yeah, it is sad. It does suck. But I spend most of my time trying to forget that and keep my head in what I have, in what makes me happy, in what I can do. Heck, I’ve run into problems in my marriage because I avoid talking about my pain to the point where it almost seems fake when I mention it. My husband is my greatest supporter and champion, no questions asked, but if I bury my pain to the point where he struggles with it, I can only imagine how other people must perceive it.

On the other hand, were I to speak on my pain more often, I worry I’d come across as whining because I don’t remember a day when I had no pain. I know I had them when I was younger, but I don’t remember it. The only days I have almost no pain now are when I medicate heavily, and I don’t even know if I’d count those as “days” because I’m asleep.

As a result, my pain becomes sort of an elephant in the room. The people closest to me recognize it and know it’s there, but they usually don’t bring it up unless it really needs to be mentioned. If I say I’m hurting particularly badly on any given day or express I am limited, they know to leave it at that unless they have some kind of specific questions about what I’m experiencing. They also know I don’t want sympathy or attention for it, I just need to make accommodations for the struggles I’m facing that day with as little ado as possible.

As someone with chronic pain and illness, pain is sort of a shadow I live with every day. A spectre that hangs over my shoulder, much like the depictions of depression (which many of us fight, as well). It’s a constant, and it’s something I often will try and push aside and ignore in favor of other pursuits. Talking about it brings it to the forefront, and I know complaining won’t do me much good. That, and no one wants to hang out with someone who spends their day whining. Even if people tell me a million times that stating my limitations and expressing I’m having a rough time “isn’t whining,” it still feels like it. You can’t talk me out of that feeling, most of the time.

Also, recognize that just because you can’t see what might be hurting or know why, my pain is still very real. Comparing it to anything else or your own won’t help. Saying, “Gee, I’m sorry you dislocated your shoulder. I pulled a muscle once there, and it hurt so much. I had to go to physical therapy and everything!” doesn’t tend to help. In fact, it takes the conversation and turns it around to be about you. When in doubt, just say, “I’m sorry you’re hurting.” You don’t need to try and relate to it or tell me about your experiences with whatever I’m dealing with in an effort to connect a lot of the time. I know you mean well – really, I do – but it’s frustrating because you aren’t dealing with what I am unless you share my condition or disease or have experienced the exact thing I have.

At the end of the day, so much of my combat is fought within my own body and head. That isn’t to say I don’t have allies, friends, companions and people who walk with me on my journey, but for a lot of my illness, I need to face my demons on my own. What I’d ask of someone on the outside is that you accept my statements of pain as what they are. Know that, more often than not, I want acknowledgement of our limitations in a compassionate manner. Sympathy, snuggles and expressions of “I’m sorry you’re hurting” aren’t unwelcome, but for many of us, we’d rather just get on with our lives and not think on it more than we have to.

Give me my space, and let me manage unless I ask otherwise. And please, please, never judge me for my pain. I can’t control the signals my nerves send my brain, though a lot of the time I really wish I could.

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Thinkstock photo via kotoffei.