When I was first diagnosed (after I crawled out from under the rock of denial I had thrown myself under) the word ‘support’ featured a lot in my vocabulary. I wanted support, I wasn’t getting support, I needed support, I didn’t need support…I yo-yoed between demanding people’s unwavering support, intense irritation when I didn’t get the type of support I wanted and seething anger that people assumed I needed support because ‘I’m perfectly capable thank you very much, I’m not a fucking invalid’.
At the beginning, if I dropped something on the floor that was just out of my reach and no one magically came to my aid like a knight on a multi-coloured unicorn I felt abandoned, alone and bitter. Didn’t people know I needed support just to function? Where was the help? Selfish, able-bodied bastards. However (and this is where my chronic illness really screwed with my head) if they DID appear out of the ether running in a Baywatch fashion to come to my aid I was outraged. What did they think they were doing? Do I look like I can’t do anything for myself?! Funnily enough, I don’t remember a lot of ‘support’ during this time…
The problem was that I had no idea what I needed. I wanted to feel loved but not mollycoddled, cared ABOUT but not cared FOR, ‘normal’ but with my new and bizarre medical needs considered. I’m sure you, my clever readers, have worked out that the only way to get this type of support was to ask for it (eurgh, the horror of communication) but I’m afraid I didn’t figure this out until much later in my diagnostic journey. What I did realise though, was that the support that people in my life were offering fell roughly into four categories:
- The Positive, perky Peters
- The Smothering, soothing Susans
- The Woeful, winging Wendys
- The Fixable, fine Freds
Spoiler alert: None of the extremes featured above are a) helpful or b) entirely without exaggeration. They are, however, a snapshot of the sort of support you might be getting right now and why you feel so irritated with it you could just punch loved ones in the face.
The Positive, perky Peters:
I HATE positivity when I’m flaring. It’s like veal to a vegan. There is nothing worse when you’re having a bad day of being reminded how beautiful the day is and how smiling is the best medicine. Fuck the day and fuck smiling. Because at that moment I can’t smile. Pain is literally searing through my body and the most I’m managing is talking and breathing, so the notion of looking out of the window to appreciate the sound of beautiful birdsong is nonsensical and, to be honest, a little insulting. The insanely positive folk clearly have no idea how encumbered those of us with chronic illness are at that moment with pain/fatigue/depression/anxiety/every-single-body-part-deciding-to-rebel-at-the-same-bloody-moment. Morons.
HOWEVER, now that I’ve finished channelling my angry, flaring self, let me take a moment to explain why those positive Peters are useful even if sometimes they need toning down a bit. Positivity is needed during a life with chronic illness. The alternative is the woeful Wendys of the world and, as we shall see in a moment, they are no more help than a chocolate fireguard. The physical symptoms of an illness that ravages your body are one thing. They are real and no amount of ‘kumbaya-ing’ is going to change that. However, there is also the mental side of chronic illness which is silent killer. You think you’re fighting Batman and then Robin comes and kicks you in the head from behind. The depression, anxiety and low self-esteem that can accompany a bad hour/day/week/year are just as debilitating as the physical stuff. So sometimes a little bit of positivity is a good thing. It helps to bring reality into a dark world of pain. And the beauty of positive Peters is that they really DO want to help. They’re trying to remind you that the world isn’t the way that you’re seeing it right now, but, because they don’t understand what you’re going through, they resort to reminders of laughter being the best medicine and end up getting themselves punched in the face. So here are my suggestions of how to get the most out of those positive Peters in your life:
- Rather than threatening to stick a singing bird up their proverbial, explain to them that, right now, you don’t want to be positive. You’re struggling and you can’t cope with anything other than the fun tricks that your body is playing on you right now. However, ask them to continue to check in on you and not give up on you: you’ll pull yourself out of the hole at some point and then you’d be more than happy to have them over and listen to the melodious song of the Lesser Whitethroat Warbler together.
The Smothering, soothing Susans:
At the beginning, these folks were like a warm hug. The soothing Susans of my life wouldn’t let me do anything without murmurs of concern for my health, mental wellbeing and general Ok-ness. They would rush to every whim, worry and wobble that I had, and I was never alone whilst they were in my company. Nothing was too much trouble, and I really felt like someone was taking me under their wing so that I’d never have to struggle again. However, after a while, the ‘soothing’ bit of their namesake fell by the wayside and the ‘smothering’ bit took over with a vengeance. On days when I was feeling better, I wanted to go for a walk, or go to a party or even (heaven forbid) make my own cup of tea. I wanted to LIVE on the good days because I knew that the bad days were just around the corner and I wanted to make the most of feeling like a semi-functioning human being. The more adept I got at looking after myself and my conditions the more I wanted to manage MYSELF according to my limitations. I needed to try different activities, and, more than that, I needed to fail. How else was I supposed to know what I could and couldn’t do? But the harder I tried to push away from smothering Susans, the harder they held on.
However, a chance conversation with a particular smothering Susan in my life made me see myself as she did. What we forget is that the Susans in our lives have seen us at our worst. They’ve been to the appointments, the medication reviews and the worse recesses of hell with us. They’ve been the ones to sit at our bedside in some dingy hospital ward waiting nervously for us to wake up from our seventh operation. They’ve held our hands tightly as we undertook painful injections, suffered under horrendous side-effects of new medications and collapsed under the weight of the shit storm that is our illnesses. And they don’t forget those images of us bent over the toilet or screaming in agony. They can’t. It’s too painful. So when we try and move on like Bambi taking our first steps they want to be under us with a safety net. And that’s not a bad thing. It’s actually a sign of tremendous love and affection, even if sometimes we do want to scream “I CAN DO IT MYSELF!” So here’s how I deal with my favourite person in the world who happens to be a smothering Susan:
- I remind her that I’m safe, that I’m taking every precaution to keep myself healthy even if I’m planning a trip to climb Kilimanjaro. I remind her that I can look after myself and go through scenarios of what I would do should I become dangerously poorly. And when I fail, I show her that I can pick myself up, pop a pill, have a cry and try it all over again. I keep her in the loop with my health so that she doesn’t imagine the worst and try to ambush me with rolls of bubble wrap. Most importantly, I remind her that there is a time for cotton wool, when she can come into her own and when I truly need her. But that isn’t right now because I’m a functioning adult and quite capable of making my own cup of tea.
The Woeful, winging Wendys
It might not seem like these folks are capable of support, but they have their own unique way of being there when the shit has hit the medical fan. If you’re having a bad day, Woeful Wendys will give you justification. They’ll say things like “Oh my goodness, I’m so sorry you’re going through this AGAIN. If I had to deal with what you’ve had to deal with I think I’d kill myself.” Huh, you think at the beginning, this person really knows what I’m going through and understands the trauma of my life. And she hasn’t once told me to be positive. Thank goodness for Wendy! But before you know it, the sympathetic platitudes take a darker turn. “It must be so awful to be in your 30s and still not married because your illness has stripped everything away from you and left you in a state of perpetual misery. I’m so sad for you.” Cheers. All of a sudden, the thoughts you’ve had on your worst day begin to be voiced by an external figure and they’re no longer comforting. Even if you try to put a positive spin on their dingy outlook you won’t succeed. You might point out that you’re in a long-term relationship thank you very much and that you’re sure marriage is on the cards eventually. Forget it: you’re dealing with a melodramatic expert. “Oh I’m sure it’ll happen eventually, but do you ever worry that your partner regards you more as a patient than a girlfriend? I feel so sorry for both of you; I’m sure that this isn’t the life that either of you wanted.” Just pass me the razor now…
So how do Wendy’s help? What’s stopping you from blocking them on every channel and instantly emigrating to Azerbaijan? Well, as already discussed, the initial justification that they provide is quite nice. It’s good to have your struggles recognised and feel validated in the fact that today you’re doing Netflix and Ill. But they also have a subtler aspect of support, because they voice the worst possible outcomes in your life. Wendy’s present the scenarios that you never want to see materialised. They give you something to push against. If they were you, they’d want to drown their medical dramas in a bottle of Bourbon but they’re NOT you. You’re not going down that route because, damn it, you’re stronger than that. The fact that you’re not a raging alcoholic perpetually contemplating social isolation proves just how strong you are. You’re a medical Rockstar! How to deal with Wendy’s? It’s simple:
- Take their justification. Ignore their bollocks. Use their negativity to make you feel great about your life choices.
The Fixable, fine Freds
I’ve deliberately left these little bastards until last. They mean so well, they’re always on hand to offer support and solutions and they come across as so bloody sensible it’s infuriating. I know. I live with one. Freds are practical and so is their support. In pain? Take a pill. Tired? Go to bed. Worried about a new symptom? Go to the doctors. Simple! How wonderfully fucking magical to have someone supporting you who has all the answers to the problems of the universe. Freds could solve the Middle East crisis in half an hour over the telephone with a bottle of Budweiser without even breaking a sweat. And if you don’t take their support? They get pissed off, frustrated and cranky. “You’re tired! Go to bed! Leave the housework/feeding the kids/caring for the animals/personal hygiene/job/life in general. If you went to bed like I’d suggested you’d be absolutely fine!” No, I wouldn’t. Because I’m not just tired. I’m exhausted. I’m tired down to my very core because my body is fighting a battle that I can’t win. And going to bed is neither practical nor helpful. Pillock.
However, the underlying cause of Fred’s solution-seeking support is a feeling of being helpless. They’re powerless to do anything about the perpetual pain, the constant fatigue and the never-ending cycle of diagnoses. Coming up with simple solutions makes them feel like they have an answer and that they could be contributing to making you feel slightly more human. The reason for the frustration is that nothing works. Because the notion of chronic illness is just that: it’s chronic. It’s not going anywhere, and neither are its debilitating symptoms. And it’s a hard pill to swallow. Underneath the practicalities of ‘everything is fine and solvable’ is a lack of acceptance. But that’s not your issue, it’s theirs. You can’t force someone to accept that you’re not going to get ‘better’ but you can help them to feel more in control. How do you deal with ‘everything will be fine’ Freds?
- Point out times when you just need sympathy. You don’t need solutions to the problem of being tired, you just want them to give you a cuddle and tell you that they’re sorry you’re going through this. Tell them that it will really help you to have support in that moment, far more than the simple solution of just going to bed.
- Give them a role. When they’re barking solutions at you like a frantic dictator tell them what would make a difference to you in that moment. Yes, you’re in pain, and yes you could take a pill, but what would really help is if they cooked dinner tonight so that you could go and have a bath.
- Use their practicality. Some of their solutions are actually really helpful. You might be in pain because you forgot to take your pills this morning. Thanks Fred! Praise them when they help, ignore them when they don’t.
I hope you’ve found this little bit on support helpful. I know it’s a bit tongue-in-cheek but the overriding principle is that people aren’t robots. They can’t be there for you 100%, especially if you don’t tell them what you need. You are deserving of support, but you might have to be selective as to who is in your entourage of care. And remember, you have a CHOICE of who to take support from. Don’t take it if it’s not helpful, and lap it up if it is.