How I've Skewed People's Perception of My Pain

I have Ehlers-Danlos syndrome (EDS), a condition that affects the collagen and connective tissues within the body. For myself and others with the hypermobile variety of EDS, this primarily affects the mobility and stability of our joints but can also cause other internal symptoms such as fatigue, dizziness and gastric issues.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I’ve always been “clicky” as my mum likes to say. As a child I was constantly telling her my knee or shoulder or “insert other joint here” hurt and she was always telling me I’d jarred it. Looking back, now I know they were subluxations, something I experience even more frequently nowadays.

Growing up hurting from doing the silliest of things, such as killing my ankle from standing on tiptoes, means that you grow up complaining a lot. And do you know what complaining a lot means? It means people start to get a “boy who cried wolf” vibe from you and they think you’re a hypochondriac. Once I came home from drama club and I told my mum and stepdad I had been given the role of a hypochondriac in a hospital improv exercise and my stepdad said something along the lines of, “That’s not really acting.” That was around 13 years ago. He likely won’t remember that, but I do.

As I got older I resented myself for complaining when I hurt. I found myself thinking that maybe everyone hurt this much and they’re better at dealing with it. I now know that’s not the case, but years of putting myself down for hurting have taken their toll. By the time I got to secondary school I’d learnt to not say when things hurt. Yet, when I was, I was limping due to a bad hip, or having trouble writing due to numbness in my hand caused by a trapped nerve, or even stopping mid-walk because my postural orthostatic tachycardia syndrome (POTS) has caused overwhelming dizziness – then I would openly admit I was suffering. However, people didn’t know about all of the smaller or more easily hidden pains. No one knew I was having major acid reflux due to gastroesophageal reflux disease (GERD) or that my non-dominant wrist was feeling too weak to hold anything in that hand. Yet, these more subtle things were and are happening 24/7, and my habit of not complaining has only gotten worse with time.

I’m not saying I want to complain all the time, I don’t want every conversation I have to include a rundown of all the things bothering me that day. But after years of saying I’m OK when I’m not, the days I do admit that I’m struggling, it sounds like an overreaction. Even though I may only feel 20 percent worse than the day before, if I acted fine it’ll seem to you that I’m 200 percent worse.

Granted I have good days and bad days, and my good days are what looks like a perfectly normal life, but I have unfortunately led people to believe that my good days are perfect days and that my somewhat bad days are OK days. I’ve skewed people’s perception of my pain. People know I have this condition but they don’t know how badly it affects me, and that is in no way their fault.

When applying to university, which I started in September, I omitted my EDS from my application because I didn’t want to be seen as someone who complains, and seeing as on most days I can do what I need to with varying degrees of effort or pain I thought not to waste their time. Imagine their surprise when four months in I’ve missed lectures because I’m too fatigued to walk to them, or I’m dreading the pain my back will be in due to the unsupportive chairs. They ask why I’ve missed learning and I say I was in pain or too exhausted, and this confuses them because I’m not someone who experiences chronic pain and fatigue – at least not according to them.

If you have a pain condition or an invisible illness, it is perfectly fine to complain. You hurt physically and mentally. Hurting all the time can be exhausting and demoralizing. If people think you’re a hypochondriac, reassure them you have a legitimate, diagnosed, condition. If they think you’re overreacting, who cares. You know you’re not.

Do not construct this idea that you are a perfectly healthy person, because you’re not. Don’t get me wrong, do not let your pain define you, but don’t let a false painless ideal define you either. I’ve spent so long saying “I’m fine” that it’s become difficult to say I’m not, and if you can’t say that you’re not fine you definitely can’t ask for help. So please learn from my mistake. If you’re having a bad day or even a less than perfect day, tell people. Don’t hide it. You aren’t your pain, but unfortunately, your pain is part of you. You don’t have to feel like you owe people a lighter conversation at the price of diminishing your own experience. Trust me, complaining more may help you in the future.

Getty image by AOosthuizen