Why It Can Be Awkward to Talk About Chronic Pain
I hate talking about pain.
It’s just one-of-those-things that makes me downright uncomfortable. And believe me — I’ve done my fair share of hearing myself talk about pain, and it quite frankly, it just makes me cringe. I can often regretfully think back at all of the times I rambled on and on about my symptoms to my friends, family or (quite frankly) anyone that would listen; I was terrified by what was happening to my body when I first started getting really sick.
I don’t like talking about pain. I’m convinced that it can hinder healing if you think about it too much; but at the same time – it needs to be addressed once in a while.
And listen, I’m not saying I never talk about it. It doesn’t change the fact that a lot of the times the moment those little complaining sounds leave my lips, I’m already attempting to bite my tongue (mentally, at least). I’m in some amount of pain every single day so the thing is, I really do think about it a lot (whether it is subconscious or not). And trust me, if I talked about it “all the time” as people say — I would never not be talking about it. And believe you, me: it would get old, quickly. (For everyone involved.)
Here’s the thing about pain. It doesn’t care if you’re talking about it or not. Even when you’re not — it’s surely there. Even when you haven’t mentioned it in a few days, the pain is still there.
Pain is expressed in other ways in our home, too. Ways that make words obsolete, sometimes. For example, when I’m in my room with the door sealed shut, under the covers at 2 p.m., that’s a good indicator that pain has gotten the best of me for the day. In my house, I don’t have to talk about it. (But it doesn’t mean I don’t.)
Talking about it is sad. Describing pain is sometimes overwhelming for people who live with it every day (especially when it’s not received with compassion or empathy). “I’m sorry” gets annoying (just being honest). So I usually try to keep quiet about pain, especially when in mixed company.
I will tell you this much. If you hear me really complaining… I’m past the point of all other reason. I’ve already wrestled it in my mind. I’ve done whatever pain relieving techniques I have at my disposal, and by this point I am slightly overwhelmed.
At that particular moment, often the only thing I can do is vocalize it. Sometimes talking about it helps, and other times it just makes me break down a little bit.
I used to carry this less-than-fancy bright red camping chair in our trunk so I could use it if we were going to be somewhere that had uncomfortable seats, or I would need to be standing for a while.
It went with us everywhere. I guess it was slightly embarrassing but at some point I stopped caring about how I looked to the world and simply tried to enjoy being a part of it when I could.
We started attending a church with horrible seats (in all fairness they are actually great seats and very ergonomic) but they were not great for me. I couldn’t comfortably get through five minutes of a sermon without wiggling, wrenching my body, stretching in pain and seething with anxiety, because I just knew that everyone was looking at me, wondering why I had to bring my own chair, wondering why I was wearing sunglasses inside (ocular migraines from fluorescent lighting), and why, other than that I looked fairly “normal.”
This one time, they generously offered me a more comfortable chair (with wheels!) and invited me to sit closer to the front. It truly made me feel welcomed. I happily went up to sit in the third row with my husband and about 10 minutes into the sermon I quietly slithered out of my seat and walked into the open hallway. The hallway led to a school cafeteria and I figured no one would be there; to my horrific surprise there was about 15 people standing around tables drinking coffee and chatting when I burst through the door, sobbing like a total nerd.
I had become so overwhelmed because I couldn’t stop massaging my legs, hands, arms, elbows and everything else. I had never sat near anyone else in church and I felt so uncomfortable as I watched everyone else sit calmly, effortlessly in their seats. Do you relate? If you don’t, maybe you can think of a time your chronically ill friend declined an outing with you. Maybe you can think of a few more possibilities as to why they declined… (other than just being flaky).
I’m not going to lie, a recent flare after a road trip had me pretty down on myself which is no surprise, I’ve written about it a few times now. Healing after surgery has not been linear and these kind of flares happen to a lot of people dealing with neurotoxicity. When I start to feel down on myself about all of my health issues it’s really important for me to quickly change my headspace. It’s difficult to keep your faith despite how much you mentally prepare yourself for the ups and downs. Last weekend was a big trip. Seven hours in a car each way isn’t easy on a sensitive body and I have to be OK with that.
I can easily recall some of my most frustrating moments where I would scour my brain for the right words to desperately describe the pain to my husband (or anyone near me for that matter.) It often came out sounding something ridiculous like, “it feels like I’ve been run over by a truck 18 times after hiking 20 miles with a broken leg and a 50-lb. pack.” I would get pretty creative but most of my analogies wouldn’t be appropriate to share here.
Pain sucks. People hate hearing about it, too. It’s a horrible conversation starter and no one enjoys it. But… indulge me – imagine for a minute that you had something wicked (like a glass shard) sticking out of your arm all day long and people expected you not to talk about it or be slightly distraught. It would suck for you, trust me. (And honestly I think it’s a little weird that everyone would want you to stay quiet about it in the first place!)
It honestly feels like if we talk about our illness too much, people get annoyed, but if we don’t talk about it at all, people continually think things “are better.” It’s frustrating to say the least. Either we act too sick or not sick enough.
This is something most people living with chronic or invisible illness deal with, so it’s nothing special. Invisible illnesses are really difficult for people to understand when they have never experienced one.
And that’s OK.
I really want to urge you to find a tribe. I’ve talked a lot about the relationships I’ve made through social media and this website many times before but I want to encourage those of you who are reading to really put yourself out there, spread awareness, share this article and help others understand why living with chronic pain isn’t just awkward for the listener… it’s really awkward for us, too.
I’ve had a rough week, and I know I’m not alone in this. Let’s support each other.
Follow this journey on Rubye Dreams, the self-love haven for women living with invisible illness.
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