Having a chronic illness like mine is often hard to explain to people. It can be a really foreign concept to try and explain what it is like to be sick all the time. I understand – as odd as it sounds, I can forget that I have a chronic illness when everything is going well! But most days, I do exactly what everyone else does, I assess my situation and activities on whether I have time, if I will enjoy it, can I afford it, and will it make me healthy or will it injure me? Its a seamless part of daily life, everything has to be assessed – I’ll risk going to this activity without the full med pack, I’ll skip having alcohol because I have that bruise on my knee and it needs to heal, I have a cold and my throat is dry so I won’t have those chips because the scratchiness might inflame and crack my throat. It is even harder to understand from the outside because VWD is, for the most part, invisible. Simply looking at a person with VWD won’t give you an understanding of how well they are. Sure, a bruise or external injury can be easy to spot, but even seeing a gash or a bruise doesn’t give you the full story given the slower, more painful healing process that goes on. It certainly won’t allow you to identify any other bleed, like a posterior nose bleed, a throat bleed, any digestive tract bleeds, rectal bleeds or gynecological bleeds. The individual can be in pain, suffer from extreme nausea (nothing like swallowing mouthfuls of blood to turn your stomach), or iron deficient anaemia and you would never know.
But what does this really feel like? A smarter person than me came up with the Spoon Theory. Its a beautiful way of explaining what living with an invisible condition feels like. And for conditions like inherited bleeding disorders, helps explain the unpredictability. So many factors go into determining how many spoons I wake up with – if I have any unhealed bleeds anywhere, how well I slept, if my hormone levels are stable (hormones control the release of factor from storage into the blood stream), as a start. So for me, I wake up everyday with a bundle of spoons, but I never know exactly how many. I can take a rough estimate, like those giant Guess jars of jelly beans, but I don’t know exactly. It makes planning and assessing your day just that bit more difficult. Most of the time, I’m lucky – I either guess right, or I have a good number in my hand, or I don’t run into any problems (due to a slightly higher dose of spazz, this is often quite literal).
Being in public when you’re low on spoons is really difficult. From the outside, you’re just a person. On the inside, your body is raging against you, the pain can be the only thing you’re able to concentrate on, walking can be difficult and slow, the ability to assess and take in your surroundings is severely compromised. It feels like you’re wearing an enormous light up sign saying “I’m breaking down, treat with care” but no one else can see it. Its the entrance to Diagon Alley in all its showiness, but without Weazley’s Wizarding Wheezes to ease the torture (I may have done a HP movie marathon in my last week at home with bleeding problems…). Being expected to act normally when you’re struggling to stand upright or weight bear on your legs is one bizzarely difficult task.
Not looking sick while actually being very ill puts you at odds with the public. Teachers don’t understand, I’ve gotten glares on public transport when I’ve been in one of those seats reserved for the elderly, pregnant or disabled, I’m almost positive its altered my relationship with my sibling, and you feel very much out of place. Even explaining it can sometimes not be helpful – I have found women can be less sympathetic when explaining periods, there is still a lack of understanding that women can have a bleeding disorder, and underlying it for a lot of people is the fact that an inherited bleeding disorder is so rare its often unrelateable. And not in a decisive or vicious way. Just because its so different to a person’s life experience they can’t relate, not unlike it could be difficult for a westerner to understand what its like living in socially controlled China, or living with the threat of malaria in some south east Asian countries. Though, other people, I’ve found, have been genuinely interested, empathetic and understanding when I’ve made my illness visible to them.
Part of living with something like VWD for your whole life means coming to terms with the fact that some people will not react well to you, regardless of knowing the reasons behind your inability to engage, a lack of presence or general behavioural weirdness. If you have an inherited invisible condition, how do you cope existing in the world? Do you like the spoon theory? How have you gone explaining your condition to others?