The Fear…

Spoonie life comes with many challenges. There are the obvious constrictions. Then there’s the hidden toll. The less apparent complications that pack a punch. It’s those tricky unseen issues that I want to talk about.

A major component of my chronic illness is anxiety. I have mental health issues which include anxiety, but my physical difficulties bring their own particular stresses. There’s the guilt; a feeling that’s perpetually nestling in the background of my consciousness. Guilt over letting people down, asking for help, using resources or saying no too many times. I have a million things to feel guilty about and every one of them has it’s own additional worries. I feel huge anxiety about cancelling anything due to illness. I worry people will be angry, upset, left in the lurch. I analyse every response and feel certain someone is annoyed. I overthink every request for help. Surely I can get this done without inconveniencing others. Am I asking too much? Always, always I worry that I’m just not worth all the extra effort.

Unfulfilled potential offers me unlimited scope for guilt. I am sure that I have disappointed. There are expectations that I have not met. Chronic illness has interrupted or ruled out so many things. I know my limitations have impacted more than me. I am haunted by the moments I may robbed folk of. To not live up to the hopes of those you respect is crushing. Not reaching your own is no party either. On an existential level it feels negligent not to maximise one’s talents. I spend more time than is reasonable worrying about all the ways in which I have short changed society. I am ashamed of all the things I cannot do.

Orange light is sunset shining in to a dark room

Shame looms large. Intellectually I know I cannot control any of my health issues. However, I’m not always great at translating that knowledge into feelings. I’m embarrassed about how little I can get done during the bad times. I often feel less capable, less valuable, just less. I stress about the judgements that will be passed. It’s very humbling to be unable to keep on top of all the housework. Likewise to have a head like a bird’s nest because your body just won’t allow you to shower & do your hair. I cringe at needing help to stand up. Wince every time I have to explain why I’m ordering a taxi to take me round the corner. Each unproductive day is a dent in the ego. It’s hard to feel worthy when writing two paragraphs & heating soup are a whole day’s accomplishments.

Then, some days you’ll wake up and feel relatively good. That should be lovely, but so often it’s tainted. Coloured with more guilt. How dare I enjoy myself when I’m supposed to be sick. Imposter syndrome creeps in. I start to feel if I can manage doing this nice thing I should be able to handle everything else. I feel bad for feeling good and I’m scared. I fear that I’ll be judged on my good days. I’m terrified that everyone else is thinking I should do better. When folk see me having a couple of glasses of wine with a friend do they think I must be fine? If I succeed professionally I’m convinced everyone believes I’m faking it. It’s such a difficult juxtaposition to live with; feeling terrible for all the things one cannot do whilst also believing the things you can will be held against you.

Yellow road sign with text, I’m scared my good days will be used against me

Even writing this is giving me anxiety. Will this be perceived as whiny? Or as me making excuses for myself. It’s not intended to be either. I just want to have honest conversations. Large aspects of the disabled/chronically ill experience are never acknowledged. Too often we’re judged or dismissed without ever having been listened to.

A privileged person’s guide to privilege…

I will never understand why the concept of privilege is so offensive to so many people. Mostly, let it be said, privileged people. It is beyond me why it frightens people to look at the privilege in their life & say yes, that has helped me and no, I did nothing to earn that aid. ‘Owning your privilege’ is merely acknowledging your good fortune. Privilege does not make you bad a person. However, refusing to countenance it’s existence makes you a bit of a dick. Since no one wants to be one of those, let’s go through this together.

If you belong to a group who hold power in society, you have privilege. If you belong to a group that is considered the default in society, you too have privilege. The fact that you do not face institutionalised discrimination just for being who you are is a huge advantage. Being born white, straight, cis, able bodied are all privileges. You will not face prejudice or disadvantages for merely existing in your body. Life is not a level playing field; some of us are sprinting before the starter’s pistol sounds.

Part of this kind of privilege is the fact that you did nothing to earn your advantage. Thus, many people will rail against the notion that they should have to apologise for holding it. Well, no one is asking you to. You are not responsible for the fact that you are white or male or cis gendered. No one is critising you for being any of these (or any other privileged) things. The problem comes when you refuse to own the benefits you have gained from life’s lottery. When some people have to struggle just to reach the starting line, ignoring that becomes offensive. We do not choose what privilege we come into this world with, but we do choose what we do with it. Acknowledge the factors beyond your control that eased your path. Then use your position to clear space for those without your advantages. 

Some of you may be thinking I have one of those privileges you speak of & my life is hard, so I don’t feel ahead of the game. Privilege is not a guarantee of fabulous life. You could be a straight, white, cis, able bodied man & still have terrible things happen to you. The privilege comes in the fact that they did not happen because you were straight or white or cis or able bodied or male. No matter your situation the abscence of the barriers that come with being a minority are still always advantageous. 

It’s also important to remember that it is possible to have privilege in one area & none in another. For example I am white, from a comfortable back ground, well educated, cis gendered & straight passing. I am fully of aware of the advantages my parents have given me and of the discrimination I have never had to face. I hold a lot of privilege. However, I am also disabled, I’m female & I’m fat; all of which incur significant hardships. My daily life is a slog. I do face discrimination & I am discredited, but I’m still lapping my trans, BAME, LGBTQ, impoverished (& so many more) brothers & sisters in the race of life. 

So, privilege isn’t always cut & dry. It does not translate to a perfect life. Nevertheless, it’s a head start. It is a whole bunch of problems you’ll never have to even consider. Privilege is being able to dismiss that the premise is even real. 

In keeping with my entreaty that you use whatever privilege you have to help dismantle the current societal hegemony I would encourage to read these voices on the topic.

Lori Lakin Hutcherson

Strong in broken places

Taking up too much space 

That crazy crippled chick

The Second City

Let’s talk it over…

Chronic illness is a bitch. The pain, the uncertainty & incapacitating symptoms are all a daily battle. Oh, but there is so much more. More that isn’t really talked about outside of spoonie circles & I thought it was about time that changed.

Obviously chronic illness covers a huge range of conditions & everyone’s experience is different. Thus I talk from my own personal view point with some input from fellow spoonies. Here are some of tricky issues that we’re quietly dealing with.

Travel

I mean any & all travel. From trying to get a bus to a hospital appointment to trying to cross the globe. The world is not spoonie friendly. 


Have you ever sat in those seats at the front of the bus that are meant to be reserved for ‘elderly & infirm’. I’m sure you tell yourself it’s fine because you’ll move if someone needs them, right? Well, you can’t always tell by looking that someone needs that seat. Having to explain yourself & ask a stranger to move is not easy. Thus I have collapsed on buses, cried from pain & just had to get off because I couldn’t stand any longer or make it to a seat further back. Which is a pretty good good analogy for trying to get about with disabilities. It can be hard as fuck without anyone noticing. 

Being chronically ill means planing every single outing in detail. Working out if you can manage to get to a bus stop or from a station to the place you’re actually going. Thinking ahead about stairs & where toilets are. Planning when you’ll need to eat, if you’ll be able to eat & how meds will work around that. Worrying about queues & how slow you move & often you’re going to have to sit down. 

I can’t tell you how many times I’ve not participated in something I wanted to because the logistics were just beyond me. 

Relationships

Whatever your illness there will always have to be that early days conversation about what exactly is wrong with you. In my case I have scars to explain & a whole bunch of fairly scary details to talk about. In the beginning I thought that would be the hardest bit, but it so isn’t.
The worst part is all the normal things that are so much more complicated for me. I am completely aware that sometimes I’m no fun. I say no more often than most people. I have many (too many?) limitations. I’ve adapted to that, but I never know if others will. 

It’s scary & stressful to try someone new. They might well get fed up accommodating me. Every time I say I can’t make a social event or have to admit that I don’t fell well, I worry. Maybe this is the point they’ll decide a spoonie girl friend is just not worth it. The truth is, I wouldn’t actually blame someone for having those thoughts. After all, life is for living .

That’s the real kicker, it’s not a problem that can be resolved. Wanting to live a life that I’m not fit enough for doesn’t make anyone a bad person. It’s just another thing I (we) get to think about when I can’t sleep. 

Side Effects

Sometimes the treatments are worse than the illness. Almost every medication I take produces a side effect that impacts on my life. In fact I take medications to help with the side effects of my medications. I’ve taken drugs that have made me vomit, itch, gain weight, lose weight, have double vision, dizzy spells, palpitations, acne, the list goes on. 


Every treatment one is offered comes with a list of possible side effects. Chronic illness is a constant balancing act. How much relief will I get from my symptoms & will it be worth the new problems it will cause? 

I often illustrate this problem like this.

Severe anaemia can cause itchy skin & angina. 

A blood transfusion & opioids can treat these complaints.

Guess what a major side effect of both transfusion & opiates is, yup, really itchy skin. 

Welcome to the conundrum of chronic illness. What cures me might well kill me to. Fun!

Money

Hardly anyone likes to talk publicly about their finances. It’s awkward & it’s private. I hate talking about money, but honestly with regards to disabilities, someone has to. Having any kind of disability almost always screws you financially. What work you can do is limited. Employers will silently discriminate against you & the current  government will loudly throw you to the sharks. All the while ones disabilities will incur extra costs at every turn. In terms of cold hard cash, illness will cost you. Lots. 


The Embarrasment Factor

Never underestimate the power of embarrassment. All of the things I’ve discussed here can make a person feel really small. Be it feeling red faced about a misbehaving stomach or the facing soul destroying humiliation of having to justify your right to be alive at an ATOS assessment. Humility is a lesson spoonies learn over & over. 


Imagine how you felt the last time you farted somewhere you wish you hadn’t & the feeling of falling over on a crowded street & having to talk to a dr about a really cringey complaint & admitting you’ve failed at something important & having to tell the world that you need help with things everyone else can do. Now imagine coping with some combination of all the above every day. Welcome to my world. 

In every life you have some trouble…

  
The first thing I saw when I checked Facebook today was this delightful message. A friend had liked it, which hit a sore spot. Of course I have seen this sort of thing before. The rise of ‘inspiration porn’ is oft discussed amongst disabled & chronically ill folk. We find this trend of objectification disturbing & frustrating & rage inducing & a million other things, none of them positive. We are told in patronising tones that we are amazing for simply existing with a disability whilst simultaneously being bombarded with the message that we must be stoic. Through our pain & struggle we must remain uncomplaining. Take it all with a smile, so healthy, able bodied folk can pat us on the back & declare us inspirational. 

So, yes i’ve seen this crap before. Tried to educate people, been offended & grown just plain tired of it. I think it was such a kick in balls today as I was waking up in a hospital bed. Within the space of a few hours I went from a cinema trip with my sister to emergency surgery in the middle of the night. That is the truth of chronic illness; never knowing what will attack next. 

  
Understandably when I see healthy people declaring the only disability to be a bad attitude I don’t feel good. In a matter of weeks I’ve endured a chest infection & accompanying hacking cough, vomiting, cramping, panic attacks, a weekend of so much pain I barely got out of bed & finally for extra fun an inuigal hernia. That’s without even mentioning the constant chronic symptoms I live with day in, day out. 

I live alone, meaning there is no one to run after me. Sure, I have loved ones to help out with some heavy lifting, but the daily grind of running a house & a life is my responsibility. Cast your mind back to the last time you were really sick. Now imagine feeling that way & having to carry on regardless. Add to that not knowing when the illness will stop or if it may suddenly get worse. Factor in having to carefully calculate how much you can do each day, get it wrong & you could end up passed out in the street. That’s my life and believe me when I say there are times when I feel really quite disabled. 

I’m not writing this for pity or admiration. I merely want acknowledgement. I want it accepted that disabilities are real & varied. I want society to allow those of us dealing with impairments to be pissed off. Our lives can get pretty fucking hard & it’s not always possible deal with that in good grace.

I’m not your poster girl. I’m not your uplifting story. I’m not brave or noble or a motivational tool. I’m just a person playing the game with the hand I’ve been dealt. Stop stealing my bloody aces. 

  

Spoonies explained..

I used a term in a post last week that garnered some questions. Spoon theory is a model I am incredibly familiar with, but I forget that not everyone is. So, I thought I’d give the theory & it’s origins.

The term was originally coined by Christine Miserandino in response to a friend’s question about what having lupus feels like. Miserandino explained that the conversation took place dinner & she used what she had to hand in her metaphor. Hence, spoons became her unit of measurement. She asked her friend to consider that each daily activity (including the very basic, washing, dressing, eating) required a certain number of spoons (energy)to complete. Whilst a healthy person will usually have unlimited spoons, a person dealing with chronic illness or disability will have varying quantities of ‘spoons’ each day. As a result a chronically ill person must carefully calculate a day’s activities in advance in order to avoid running out of spoons before the end of the day. When a person has used all their spoons they are no longer capable of much more than resting. So, in effect, life with a chronic illness becomes a constant balancing act of tasks the must be done against spoons available to do them.

There you have it, an introduction to spoon theory. I am aware it’s not a particularly cheery topic, as a sweetner I offer you some cute pictures of my darling boy, Bronan.

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