Are you really, truly chronically ill or are you 1) faking it or 2) milking a moderate illness or symptom in every way you can? I’m sure you’re thinking, “Who the hell does this bitch think she is?” but the harsh reality is that these are the confronting questions being raised about the spoonie community of late and I’m not one to shy away from saying what others are thinking. Lolcow, a brutally honest discussion forum, has been responsible for kicking things off. The all-anonymous members participate in conversations that challenge the health claims of particular indivuduals and, once they’re convinced they have a definite faker on their hands, pick apart their supposed “journey” day by day, analysing any new social media posts and picking holes in their story. That sounds like bullying 101 doesn’t it? PLOT TWIST! Many spoonies are gradually, cautiously coming out in agreement with some of the sentiments behind it.
“We should be building each other up instead of tearing each other down,” say some folk and perky sorority sisters. In case you hadn’t guessed, I’m not perky. Minus perks. Anywho…it’s all very well being jazz hands supportive of one and all but how will you feel when you realise that the actions of some of these milkers and fakers are actually making your own life with chronic illness a whole lot harder? To be clear, I am not referring to and will not refer to any of the individuals discussed on the forums because that’s not the point of what I’m trying to get across here. A witchunt is dangerous and could lead to spoonies with very real pain and suffering wilting away in silence through fear of sharing a single struggle. What I ask you to do is to have a strong awareness of the three following types of spoonies:
1: The 100% genuine spoonie who lives with severe pain and other distressing symptoms. They have their moments, their breakdowns, but on the whole they tend to “get on with things” to some extent. Their Instagram feeds will have a bit of variety between brutally honest posts when they can’t cope and pictures of their dog or the dinner they managed to make on a low pain day. They’re very much in the community but they have other focuses in life too, no matter how small;
2: The 100% genuine spoonie who lives with severe pain and other distressing symptoms but who is all consumed (sometimes, they’re not aware of this) by their illness(es) or…actually gets a kick out of being sick. These social media accounts tend to be littered with blood pressure readings, pictures of blood tests, IV bags, random bruises and woe-is-me posts that manage to connect any old image to their illness. For instance, the caption under the shot of a cup of tea on a sunny patio will read: “Just tea for me this morning. Yet another day where I can’t stomach food. So jealous of all the kids running around. If that were me I’d throw up.” Obviously we all have our moments but I’m talking relentless joy sucking here. I keep myself far away from these accounts and if I come to realise one is like this, I’m done. I already have enough falling out of my arse without my joy falling out of there too; and
3: The unmitigated, rambling faker. I say rambling because this is exactly what they do. Symptoms become diagnoses because, the longer the list, the more complex and terrifying things appear to naive onlookers. For instance, I have chronic migraines and that’s the diagnosed condition. I don’t, however, announce that I’m also diagnosed with vertigo, tinnitus, cyclical vomiting, situational depression, functional neurological disorder, disorientation, sensory overload and phantom smells (I could go on and on) because these are all symptoms of a diagnosis. Listing them all looks much more impressive though, doesn’t it? The thing is, with such an extensive list of “illnesses”, they begin to trip themselves up and it’s completely inevitable. Sometimes it takes a year, sometimes 5. Many of them are so intelligent though and so utterly invested on being a successful sick person that along the way, they manage to fool doctors into giving them meds they don’t need and innocent onlookers into donating money from their own pockets for unnecessary holidays, trips, experiences and high-tech equipment for their home. Just FYI, there are plenty of genuine fundraising pages but deciphering which is which is a tricky matter.
The first group is filled with the people you want to surround yourself with. They’ll cry to you on the phone and you’ll cry when you’re struggling too. Equally, you’ll both pee your pants laughing (probably literally) at just how ridiculously shit things can get. You’ll celebrate small victories like baking a cake or going to the supermarket and discuss the plans you have in place for when you get a hold on your symptoms. You keep a sense of hope, even if it’s a faint glimmer. The second group will listen to you cry…but then they’ll start crying and forget why you phoned in the first place. You’ll be guilt tripped if you tell them you’re feeling good because you managed to go to the cinema for the first time in a year. “Oh, lucky you…I can’t go at all because it triggers my migraines.” If you faint having bloods drawn, they faint and crap their pants. The second group are soul suckers but the final one is downright dangerous and damaging to those struggling just to function with chronic pain. They mean we have to fight even harder to be heard because they’ve presented with symptoms that don’t add up to their willingly busy lifestyles (I’m not talking about employment) of gigs, gallery visits, afternoon teas and fortnightly nights out on the lash. When a doctor is repeatedly faced with nonsense, they naturally become more suspicious and cautious and while that isn’t right, it’s simply human behaviour and instinct. Whilst previously we would struggle to access morphine for our 9/10 pain, we now face intense questioning if we start to ask about something even weaker. You see, Fakey McFakerson has already been prescribed slow release morphine or fentanyl patches several times but each time she gets them for her bizarre symptoms, she immediately manages to go to Majorca or Alton Towers. When this is reported back to the doctor (because McFakersons always slip up with what they share verbally or on social media) they think, “Well Christ she can’t have needed it that badly,” and immediately become more suspicious of others. And those who desperately need financial help on GoFundMe or the like? Well they’re overshadowed by dollar-seeking sycophants who tell lengthy tales of woe in order to raise £10,000 for a “much needed” holiday. I genuinely recently saw someone who claimed they had Fibromyalgia, a viciously painful condition, trying to raise £7k so she could go backpacking for the “spiritual release”. I saw a pig fly over my house that very same night.
Do we know for sure who’s faking? Unfortunately no. Should we err on the side of caution with who we follow, support and build spoonie friendships with? Damn straight. I definitely wouldn’t advise that you go into every encounter suspicious and waiting to be proven wrong because you’ll miss out on a hell of a lot of lovely people, gems of society. You could also potentially be accidentally quite transparent in your suspicuousness and make a truly unwell person feel like crap. What I’m saying is trust your gut and do your own research to make your mind up when you can’t quite put your finger on something. In the long run and on the larger scale, it’s the only way to protect your own health needs and the needs of genuinely ill people at large.