"But You Don't Look Sick"

This post is about my experience of living with "invisible" chronic illness, as an attempt to shed a bit of light on day to day life, for friends and family that don't necessarily understand that much about my condition. I'm writing this for me and my fellow "spoonies" (see link later on), who get frustrated with hearing the phrase "but you don't look sick". Those of us that have a chronic illness are well aware that there are people in the world that are worse off than us - we just want to share our experiences for better understanding.

One thing that I should say is that whilst I have friends with the same condition, our day to day experiences can vary as we don't all have the same combination of symptoms, at the same severity, at the same time. I also have friends with different conditions that I share symptoms with. The main thing that we all want, is to try and enjoy life as much as we are able, and to not be treated with disdain when we need to make changes to "normal" life, even when we don't obviously look unwell.

My example below isn't every single day in my life, but it's an example of some of the things that people with ME/Lupus/Fibromyalgia/Chronic Fatigue or similar deal with throughout a flare up. When we're not in a flare up, we still get a lot of the symptoms in some combination or other but they might be less severe, or last for shorter periods of time.

A key thing to know about people with a chronic condition (whether mental or physical) is that on a day to day basis, we're pretty damn good actors. We are great at putting up a façade - pretending we're fine when we're not, or that symptoms aren't as severe as they are. By the time the rest of the world notices that we look a bit tired or off-colour, we've most likely been battling a flare up/crash for days, if not weeks. That doesn't (necessarily!) mean the rest of the world is crap, we're just used to having to cover up how we're feeling.

So -  imagine you wake up in the morning feeling like you have sawdust in your eyes; with the aches and "walking through treacle" fatigue of flu; the massive over-sensitivity to light and sound that comes with a migraine or a heinous hangover; the soul-destroying depression of the worst day of your life; the palpitation-inducing anxiety about losing your job if you do what you need to do and take a day off; whether you ought to give another reason for calling in sick such as food poisoning so you don't get judged as a blagger for taking another day off related to a condition few people understand.

Imagine that it takes literally every ounce of energy that you have to open your eyes, drag yourself out of bed and walk to the bathroom to wash, brush your teeth and make yourself vaguely presentable. You're running on empty already as you didn't get to sleep til the early hours despite being exhausted as you couldn't find a comfortable position to lie in and your brain was working overtime. You should have left the house about 20 minutes ago but didn't manage it so now you're running late for work.

You struggle through the day trying to be your "normal" self;  not be grumpy; not end up in tears through pure exhaustion; stay awake at work; remember to do all of the stuff that you're supposed to do throughout the day; try not get too frustrated with yourself when your brain cannot manage to get the simple words from your brain to your mouth despite talking about a subject you know inside out due to brain fog (you can find out a bit about brain fog here.)

Your muscles are desperately tight so you think that maybe a bath might help relax them when you get home. You run a warm (not hot) bath, and gradually add hot water to help your body adjust to the temperature. When you can get out of the bath, it then takes you about an hour and a half of being bright red in the face and sweating to cool down (by which point you need a shower!) as your condition means you struggle to regulate your temperature.

You've been invited out by a friend that you love dearly and haven't seen in ages. You love laughing and putting the world to rights with them and it's only a night in with a film, not a major night out and clubbing. But it's taken all of your effort to cook yourself something vaguely nutritious to eat; and the thought of putting anything other that your super-soft pajamas against your easily irritated skin makes you feel nauseous (find out more about Allodynia here). You don't want them to think that you don't care about them or don't want to spend time with them, you're just literally at the end of your tether and don't have the energy to keep the mask in place. So you grovellingly apologise for having to cancel once again, and hope that you still continue to get invited to stuff despite having to cry off or leave early on a relatively regular basis.

You may well know someone that swears that eating avocados "cured" their chronic illness; who found that hugging trees evaporated their severe pain; who swam with sharks and miraculously lost their insomnia. Which is fab for them, if somewhat unlikely. Just tread a little carefully with the "miracle fixes" you quote, as most people with chronic conditions have had them for several years or longer (quite often enduring medical professionals/friends/family/partners telling us that it's all in our heads) before finally getting a diagnosis. We have therefore had to discover our own coping strategies - which will work some times, and not others. And often the only thing that you finally get from the doctor is painkillers, which bring their own side effects that then have to be dealt with.

So what can you do to help? Be understanding. Don't judge us when we have to postpone an event; when we sometimes need to walk with a stick despite only being in our twenties or thirties. If we're not up to going out, see if you can come to us and curl up on the sofa under a duvet watching films. Are you cooking a roast or something yummy? Bring us a doggy bag when we don't have the energy to cook more than toast. Offer to help us change our duvet cover when it's taken all of our energy to get dressed and get presentable for the day before we even think about doing chores.

You can find out more about fibromyalgia from lots of sources but some of the most reliable are:

www.nhs.uk/conditions/fibromyalgia/

http://ukfibromyalgia.com/what-is-fm.php 

http://www.fmauk.org/2-uncategorised/52-what-is-fibromyalgia

Click to find out more about the The spoon theory.

So, that's a whistle stop tour of fibromyalgia & similar conditions. Not to whinge, not to say that we have it worse than anybody else, just to give you a little snapshot of why we sometimes have to cry off on social events or are not at our best.

We're still your friend, partner or relation. We still love you and enjoy spending time with you. We have just learnt (and often it took us a long time to do so!) that sometimes it is better for everyone else as well as ourselves if we put ourselves first and take time out to recover.