As someone with EDS and chronic pain, do I ever feel ‘normal’?

Over the past few weeks, I’ve been doing some necessary maintenance on the farm where I live: working outside on plant beds, fixing fences, replacing a broken light fixture, and more. These types of activities tend to make most people sore, regardless of whether or not they have Ehlers-Danlos syndrome (EDS), as I do. Yet it’s led me to wonder how similar my experience is to those of others.

Everyone is different; even those of us with EDS and chronic pain have widely varied symptoms and experiences. But how would the average healthy person feel after this type of work? Would they be more or less sore than I am? Would their aches resolve more quickly? Before starting a task, do they consider how it’ll make them feel, then carefully decide whether it’s worth doing?

There’s no way for me to know these answers for sure, but I’ve been thinking about them. How do any of us know if one person’s experience truly aligns with ours? And is that more true for those of us with a chronic illness? I’m about to delve into some quasi-philosophical thoughts, but bear with me!

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When I do traditional yardwork or house chores, I usually know what level of pain and discomfort to expect. For example, vacuuming is rarely a problem for me, despite my bad shoulder, but stirring stiff cookie dough is a recipe for a pain flare. Any kind of work that requires movement away from the center of my body tends to cause pain — so pushing, pulling, and reaching affect me far more than lifting — not to mention that proper lifting is done primarily with the legs, rather than the arms!

Yardwork tends to make me all-over tired, with a soreness that feels different from a standard pain flare. The pain is flatter and less intense, but it’s definitely still there. I’m guessing I have a lower threshold for this sensation than people without EDS, but I don’t know that for sure. Because it’s easier for me to get injured, I just assume I also get sore more easily.

This tendency makes me wonder how “normal” my soreness is. Do most people feel this way after doing too much? I feel a general ache — noticeable, but not necessarily overwhelming.

Since I seem to have a higher pain tolerance than most because I’ve become accustomed to my EDS, I also ponder if I’m hurting more than I realize. But true EDS pain hurts far worse than my current soreness, so I don’t think that’s the case.

I realize that none of these questions have true answers. Pain is unique to each individual and can’t really be compared.

With that in mind, I’ve been wondering how various experiences feel for different people. This question resulted in a lightbulb moment for me: No wonder it’s so hard to explain to others how we feel. Without any kind of comparison point, how can we help them understand?

I don’t know that there’s an answer to that question, either. But recognizing how distinct our feelings and bodies are helps me recognize why it can be so difficult for others to understand EDS and chronic pain.

I genuinely believe that most people do their best to comprehend my pain, given what they feel and know. I think it’s important to appreciate when others try to step into my shoes and get an idea of what I experience. Even if they can’t fully understand it, their willingness to try shows that they care. And to me, that’s what truly matters.

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