Hey Vida, thank you for answering our questions about your invisible illnesses, Ehlers-Danlos Syndrome and chronic fatigue. Firstly, could you introduce yourself to us?

I'm Vida Adamczewski. I'm a writer based in South East London, and I live with chronic fatigue syndrome and hypermobility syndrome. 

For anyone who may not be familiar with these syndromes, please tell us how these illnesses manifest for you and your diagnosis process.

Chronic fatigue, in its formal definition, is when you've experienced tiredness and no relief from sleep or rest for over six months. But how it actually feels is kind of like your body's made of concrete, and it means that when you wake up in the morning, it feels like you haven't actually been to sleep. Like you've got sandbags over your feet or something. Very difficult to move through the day, everything just slows down like I'm moving through treacle. I get really terrible brain fog, which means that I struggle to reach for words or problem-solve, which can be really frustrating as a writer.

Hypermobility syndrome affects my entire body. Pretty much every soft tissue system in my body is affected. So that's my gut, my bladder, my brain, my eyes, and all of my joints. The most obvious presentation of it is that I can dislocate my joints easily, either accidentally when walking down the street or if I stand for too long on one leg, my hip might pop out, and you get quite used to those kinds of accidental moments. But you can also do it on purpose, which is the sort of contortionist party trick of having hypermobility syndrome.

But there are all sorts of subtler symptoms that people don't recognise, which are some of the harder ones to live with. I have really bad problems with my gut and my bladder, so I'm on medication to stop me weeing all the time, which is very glamorous, and also things like anxiety, astigmatism in my eyes and a whole range of things that seem like disconnected, separate, maybe even quite minor medical complaints. But the totality of them can be quite overwhelming and really affect how you live day to day.

There's an interesting question about whether they should be considered invisible disabilities really at all. Ehlers-Danlos syndrome or hypermobility syndrome presents in quite a visible way, actually, like my body is physically disabled and if you see me walking around with a cane or wearing a back brace or with my joints strapped up, then you might assume that I have a condition that is affecting my mobility. But then, on other days, because it fluctuates, I might just be walking around, and you wouldn't notice anything about me. So they go in and out of visibility.

On some days when my conditions are really flaring, I might be completely bedbound or housebound. And when you’re just absent, that's the kind of invisibility people don't notice in the same way that they notice when you're being disabled in public outside of your house. But also, there are some days when my appearance is completely different, where I'll have bad inflammation around my face or lots of bruising. My circulation system is quite bad, so I'll get more bluish and purplish limbs and all of those things to me are visible visual signifiers of an illness, but people don't know what they're looking at, and they don't know what to look for, which is a very strange thing to navigate in the world, to know that you can see that your body is ill, but everyone else who hasn't been schooled in disability can't tell. I always think I lock eyes with people on the tube who are also disabled in some way and that we can see it in each other, like a secret code.

What did your diagnosis process look like?

For chronic illnesses, particularly a condition like Ehlers-Danlos, it's really hard to get a diagnosis unless you go privately. And that's partly because people don't understand the conditions. Even medical professionals don't understand. The conditions are considered relatively niche, even though we know that they're significantly more common than they appear, and they’re just really underdiagnosed. 

So, what you're doing as you go through a diagnostic process is attempting to persuade a medical professional to believe you and also educating them in some way about something that you haven't done a degree in but you've lived with every day of your life. It's amazing how frequently medical professionals will value the piece of paper that they have on their wall over your lived experience. My own diagnostic process is ongoing and will probably be ongoing for the rest of my life, and it started formally when I was 18. When I went to university, I caught fresher’s flu and then had flu for six months. That was just how my body had always responded to illness - it was decimated by it - and I had assumed that that was relatively normal. Eventually, I was seen by a doctor who said, “That's not normal. I'm concerned about that.” That kickstarted my diagnostic process, which began with chronic fatigue. I have carried six or seven different labels over the last eight years. Each condition that I've been told I might have feels simultaneously like it's fantastic to have something to attach myself to and to understand my body through, but they always feel incomplete, insufficient for my experience, and they also typically don't really engender or spur you to get any better medical treatment. I've had physio, and I've had various different medications and pain management stuff, but really, you get given the same advice, which is your condition is chronic. Your condition is inherent to your body. You have to learn to live with it, and that can make you feel very defeated within the medical system.

A lot of people give up on pursuing a diagnosis because it feels like the diagnosis doesn't offer anything. To me, the thing that diagnosis can offer is the legitimacy of your experience. What I was looking for was just a word or a phrase that I could use so that I wasn't stuck with the inadequate language of I'm just tired, I'm just sore, or I don't feel well.

I wanted a term that felt like it had more gravitas when I sent an email to a tutor at university or had to take time off work. Unfortunately, I think that's mostly all that diagnosis does for people with invisible illnesses.

People are very reluctant to listen to disabled people just describe their symptoms and accept the symptoms without an overarching medicalised narrative. You spend a lot of time being asked to prove why your kind of tiredness is worse than an able-bodied person's kind of tiredness. And the fact is that it's not worse. It's just there all the time. And it's not tiredness, it's fatigue, or it's chronic pain, or it's multiple injuries that haven't been treated properly. But we have to use this kind of umbrella term, and then that can be so easily crushed into you're complaining, you're making a fuss. I don't really believe you. I don't understand why that's so difficult. Really, diagnosis is just the terms that you get armed with when you go through the medical system that defend you against that lack of empathy and cut through that conversation that denies your experience.

That doesn't mean that they say everything about you or that they can totally explain your body, or that they are an integral part of your identity. It can be a label that you carry around that feels like an ill-fitting piece of clothing. But it's better than being naked.

You once wrote that your hypermobility leaves you “in a state of permanent abstraction with [your] arms on backwards and [your] stomach back to front.” On days when your body feels like it’s working against you, is there anything you can do that provides comfort?

I used to feel like that all the time. I used to feel like my body was an antagonistic monster that I had to dwell within and that we were constantly in conflict. My body was the source of my frustration, pain, and anxiety. If I had a flare-up, I would hate my body and resent it with every fibre of myself.

It’s taken years, but now, when I have a flare-up, I understand that my body is signalling something to me. It's usually signalling that I've been working too hard, pushing myself too much to fit into an able-bodied society, and not taking enough time to feed myself, sleep, wash, stretch, and do all these tiny insignificant things.

So, I try not to think of my body as being something that I'm in conflict with that's working against me. I try to think of it as being something that gives me information about myself and guides how I live my life as opposed to preventing me from living some other dream life. I think that's something that comes from chronic illness. Always hovering over you is the fact that a new wave is coming, and gradually, with anger and rage and reluctance and grief, you learn that to aspire to a body that works perfectly and never gives you any pain is impossible and that it's much better to make peace with how your body does work and lean into it, listen to it, and spend time with it as well.

In a way, being bedbound is the most healing time for me and my body because I just lie in bed with my body without any distractions, and that's the best thing that I can do.

The world is so go-go-go, especially in fast-paced London. Has living with chronic fatigue and Ehlers-Danlos Syndrome impacted how you slow down, even when you don’t want to? What does this look like for you, and how do you manage your own needs over the expectations of others?

I quit a job about two years ago now because I had decided that I wanted a job that was full-time, dynamic, and constantly challenging me. I thought that was a sign A) of adulthood and B) of having figured out how to be in London. I enjoyed my job. I worked in marketing. It was fine, but it was exhausting. And I completely broke my body. I was unable to do anything in my time off. I couldn't write, I couldn't think properly.

I was constantly injuring myself or having major stomach pain flare-ups that were excruciating. Then I had an epiphany where I realised that there was no need for me to push my body to do things that other people think are signs of success and that, actually, there is a way of constructing a life that can be responsive to your body and can kind of give you permission to rest.

I now work part-time and do a lot of freelance work. I conserve my energy, which means I have to say no to things all the time.

The world just is not built for people who are disabled. And that's an injustice and a cruelty. But I just seek spaces that are made by other disabled people; we're really good at designing events.

We're really good at holding each other up and giving each other space to drop out of something last minute without any sense of guilt or shame. Having connected with lots and lots of disabled artists and creatives in London, I feel like there is an underground world in London of people who are often asleep but who are very efficient when they're awake, and those people are amazing.

In a social media post, you talked about how cold water swimming is the most effective treatment for your illnesses. Can you tell us a bit about how cold water swimming provides relief for you and your body?

I love cold water swimming. It is the best thing I have found for relieving pain and increasing circulation to sore joints, which speeds up healing. For those two things alone, cold water swimming has been a massive tool in my life for managing chronic illness because relying on medication makes you really foggy and drowsy, and it doesn't reduce the inflammation in your body. It may even increase it a little.

The best thing about cold water swimming as a disabled person is that cold water swimming requires you to train yourself mentally. It’s really daunting to put on your swimming costume and look out at an open body of water, which you know is freezing, and you know will be uncomfortable, and will probably make you shaky and jittery when you get out. If you get in and do a few strokes, it's like you've conquered something which you knew was going to be so hard physically for your body, and you still did it.

That dauntlessness has been the biggest tool that I've had for managing my illnesses. To face every challenge that I get on a normal day and think it will be painful and I will probably feel tired for the rest of the day, but I'm still going to do it. It's just opened up my world in that way. To know that my body can do difficult things and my body can be in pain and out of pain. And, it's a bonus that it's also good for inflammation, circulation and pain relief.

You’ve spoken before about how social media can be full of content that puts a lot of pressure on people to exercise, which can be very difficult and triggering for less abled bodies. Please talk to us a little more about that and what you would like to see more of on social media.

I hate fit-fluencers so much. I respect what they're doing, and I think it's really important that people have access to fitness routines that are relatively easy to follow, with accessible equipment and instructions that mean that they're confident when they're in the gym. But, the obsession with fitness programs that change how your body looks, or the focus on developing strength as an alternative to developing beauty is this kind of terrifying swapping out of terms for the same thing, which is, essentially, that your body isn't good enough as it is right now.

It could be better, it could be stronger, it could be more muscular, it could be more toned. And you can do all of this with these five booty-building, squat based exercises or whatever. As a disabled person who often struggles to walk for 20 minutes, that would be a challenging piece of exercise for me. The idea that I could sculpt my body and that to not sculpt my body is doing some kind of disservice to me as a woman, me as a force in the world, that it's eroding my discipline is just so poisonous. Exercise shouldn't be about changing how your body looks. Exercise should just be about moving your body occasionally if it feels good, and if it feels good is probably the most important part because the body is something that you have to treat with respect, gentleness, and sensitivity.

You know that instinctively, if you're someone with a chronic illness, because any time you push your body to do something that it can't do, you will have to pay back that debt of unkindness for months. And I think it's really dangerous to say to people that it's good to feel sore, it's good to do things that are body sculpting so that you're actually superficially changing your body shape as opposed to allowing it just to be as it is.

An invisible illness can feel isolating, and it can be difficult to ask for help. In what ways can the people that surround you support you?

This is probably the hardest question to ask someone with an invisible illness. What can other people do? Back off, mostly. I think a lot of the time, what you want when you're having a flare-up is just to be allowed to take things at your own pace and not to be interrogated about it, not to have your answers questioned and to be allowed to be as you are.

I mean, if I were to be really honest, the most useful thing that someone can do for someone who's in chronic pain is to allow that person to be grumpy, impolite, cross, rude, filthy, to leave dishes undone, beds unmade, carpets un-hoovered, to generally be incredibly unpleasant and to try and remember that that's not personal, that they are in extreme pain.

That is really hard to do. And I am almost nervous to say it because I don't want people to feel that they have to put up with my bad behaviour. But it is so difficult to be in pain and also be smiley and radiant and to care about what's going on in other people's lives. So, if I could have full permission, if all of my loved ones could give me a pass three days a month where I was just allowed to be horrible, horrible, horrible, horrible and not have to apologise afterwards, that would be fabulous.