When I Hide My Chronic Pain but Wish Others Understood My Struggles

It’s unbelievable how much I expect of people without ever actually asking them to do anything. Talking about my pain is not easy for me, and the only reason this blog works is because I can sit somewhat anonymously behind a computer screen rather than looking you in the eye. I don’t have any social difficulties (that I know of), it’s just that I find it hard to admit I’m struggling.

So this is what inevitably happens on any given day when I don’t offer any report of my pain level and I do my best to hide how I’m truly feeling: I become physically and emotionally exhausted. I struggle up the stairs when someone calls my name, I agree to go for coffee when all I want to do is lie around, and I stay out later than I should because I don’t want to be the first to leave. Sometimes I hit the wall at a pretty convenient time, whether it’s when I hobble out of the car and into my home for the night, or when I finally make it into bed. But more often than I’d like to admit, I realize I’ve run out of rope (or spoons for those who know the spoon theory) at an inconvenient moment.

I could take you through so many unfortunate stories from the past decade which all end in a(n) embarrassing/dramatic exit. There was a Mardi Gras parade (I can barely manage one a year) when my dad, using all his fatherly instincts, somehow figured out a way around the crowds/traffic/blocked streets/floats so he could get me home. There was my 28th birthday dinner that ended early with my brother running out to his car in the rain and driving me home. And there was a night out with friends that ended with me putting myself in a cab, unable to tell anyone where I was going or why because I knew I’d start crying as soon as I opened my mouth.

When you list it out as I did above, it sounds like I have this really fantastic, vibrant social life. Let me assure you, I do not. I’m working on it, but I definitely spend more nights home alone than out with people. I mostly only put myself in compromising positions when I feel obligated and/or it’s a special occasion. Sometimes I’m just desperate to be a part of the celebration and I want to join in, even if it’s just a small way. But as we all know, there’s no such thing as doing anything “small” when you have a chronic condition; it’s all a big deal.

Whether I’m out celebrating or it’s just a normal day at the office, I find myself wishing those around me understood how I feel without me having to say a word, which is, frankly, asinine (and a bit narcissistic). I silently curse to myself when people ask me to do something I just can’t do, or I want to lose it if anything is asked of me on a bad day. But so few people actually know what is outside my comfort zone (because I don’t tell them), and even fewer know what it looks like when I’m struggling (because I don’t tell them). Yet I end up blaming them for their ignorance.

I hate that my chronic pain extends beyond me and to my family and closest friends. For a while I wasn’t even sure if I wanted to get married and start a family, because I know I’m not at my best and wanted to minimize the damage, so to speak. I stay silent not only because it’s hard to ask for help and admit when I’m in pain, but because I don’t want to burden anyone more than I already do. The simple fact is that if I was more open I’d probably take a little stress off them. They wouldn’t have to guess what I was thinking or feeling because I’d tell them directly, or they’d know they could ask and get an honest answer.

For all who are reading this and know me, I’m working on it; I promise! Treat me however you’re most comfortable, and even if I react poorly in the moment, I can almost guarantee that I will find the error in my ways as soon as my medications kick in (and if I don’t, or if I do, feel free to call me out!) To everyone else with chronic pain or another chronic condition, I hope you’re better at being honest than I am.

Follow this journey on 29 Going on 92.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

*Sign up for our Chronic Illness Newsletter*

Find this story helpful? Share it with someone you care about.

Related to Chronic Pain

When I Try to Explain What Undiagnosed Chronic Pain Feels Like

I’m not sick, but I’m not well. The most frustrating part of this for me is knowing exactly how I feel and not being able to fully convey those feelings to someone else. Telling someone you are in pain, no matter who is listening, will never make them understand. Yet, not trying to explain your pain [...]

My Promise to Myself When Doctors Dismiss My Chronic Pain

I’ve struggled with chronic pain for the last several years, due to rheumatoid arthritis and neuropathy of an unknown origin. As a result, like many others out there, I’ve grown accustomed to having to justify my pain to medical professionals who either don’t understand, or whose hearts have hardened over the years from being overworked [...]

The Losses I Grieved When I Was Diagnosed With Chronic Pain

The things in my life I feel I have lost are difficult for me to face at times. However, when I look at the picture below just taken this past Friday, Earth Day, I am reminded that I survived the biggest “loss” I thought I could ever lose: myself. I will be 35 in June, and this past [...]

The Pain Doesn't End When You Leave the Hospital

By the end of April, I had already lost a month of this year to the hospital; I spent about half of February and half of April as an inpatient. In the midst of this time my cousin got married — I was unable to stand up as a bridesmaid so she had her wedding [...]