But you don’t look sick…

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?


About Jenna

Seeking a new way of working outside the standard 9-5. Writer for hire - blogs, internal procedures, social media posts, training manuals or anything else you an imagine.
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4 Responses to But you don’t look sick…

  1. Pingback: Waiting for the bomb to drop | MyMissingFactor

  2. This is an amazing post! I do not have all the answers for explaining chronic invisible illness. Sometimes I feel like I must be an alien. People look at me like I am from another planet when trying to explain my body and how it responds or reacts to daily life. I have found that I try to explain my condition in no more than two sentences and let people ask questions if they are truly interested in knowing more about the “condition” itself. Most of the time they want to know how it effects me more than anything. It really does not help my feeling like a normal human though when I explain how it makes me feel. Nor when one day I can do something or join an activity and another day I can not. And if I do join that activity…that means I gave up something else. I only recently found the spoon theory myself but I have used it several times to explain how my condition dictates that I make daily decisions.

    I love this line…”Not looking sick while actually being very ill puts you at odds with the public!” It’s not like we still do not have pride in ourselves. Although, there are days that I just do not have enough spoons to give up one (or two) for getting dolled up! And then I feel bad or ashamed for going in public looking that way. It is such a two edged sword. Again, great post!

    • It can be so hard to navigate can’t it. Being able to fully engage one day, then not being able to attend the same event a day, week or month later. And when I’m having a bad bleed, or a painful but not obviously so bruise or injury I’m so much more likely to let my ‘mean girl’ rule my brain. I presume everyone is thinking badly of me, because I feel bad I can’t live up to my responsibilites or engage in the way I want to.

      Its part of the reason I’ve started writing about it and sharing publically. Sure, most people know nothing about my condition because its rare. But by sharing I can educate others, and hopefully help myself see my own abilities in a new way and learn to contribute in a way that supports my physical and mental health.

  3. Pingback: My green smoothie manifesto | MyMissingFactor

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