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.

And so it is the colder water…

It’s been around 8 weeks since I miscarried. I think all things considered, I am doing ok. I mean, I’ve not completely fallen apart. I haven’t turned to scalpels for comfort or absented myself from the world. I’m getting up & painting my face & taking part in life. I wish I could say it was easy, but on days like today, it feels like drowning. 

I am attending the recurrent miscarriage clinic to see if there are any issues I am not already aware of & the midwife I see has been wonderful. She had given me info on a ‘support group’, which I’m considering. I’m on some new meds to help with PCOS & tracking my periods etc to keep on eye on things from that side. I’m socialising & blogging & getting more politically active. I’m doing everything i can think of to keep moving forward. So why do I feel like I’m wedged in wet sand?

I think about what might have been every day. Not all day long, but it’s never far away. There are so many reminders. So many painful things that can’t be avoided. From appointments at the maternity hospital & other people’s babies to just the scent of something that made me nauseous when I was pregnant & doesn’t anymore. I don’t want the world to stop. I don’t want to rob anyone of their joyous moments; it’s just so hard. The happiness I feel for others comes with a stab of sorrow. It’s been this way for so long, but my recent loss has given that sadness renewed potency. I let all my hopes out of a place I kept tied up tight. Blueprints for a life that I hadn’t dared to examine sprang to life & folding up those plans is proving difficult. 
I have my period again & I know that impacts on my mood. All of the sensations of menstruating mirror miscarriage symptoms. The cramps & sensitive nipples are reminders I don’t want. The blood remains wrapped up in my trauma. Forever a trigger. And yet, I’m glad to have the period. Not so long ago I had practically none. It’s a relief to have this increasingly reliable sign that my ovaries are doing something. Like so many other things the positive is marred.


I think from the outside I probably look fine. I want to look well. No, I want to BE well. I’m really fighting not to let my life slide. The truth is I’m struggling. My creative output is vastly decreased. I lack the motivation & clarity to write. Not writing is not good for me. I process my experiences through words on the paper. The less I write the more anxious I become. Of course the more I stress about it, the less I am able to curate my thoughts. It’s a predictable cycle. There are obviously more practical concerns; my words keep a roof over my head. 


My physical health hasn’t been good. My sleep is appalling. I know that takes it’s toll. I attempt to rationalise myself out of days like this. My exhausted, pained, grieving & traumatised self will obviously have lows. I know this is to be expected. That knowledge doesn’t change the dread. It does nothing to chase away the fear when I awake to a complete inability to function. When nothing shifts the weight crushing me or the desire to disappear. 24 hours isn’t a long time except when your swamped in depression. I can get through the bad days. I’m just terrified of the days multiplying. 
That’s the crux of it. Mental illness feels a bit like being an alcoholic. I will never completely recover. The lows will always come. Life will always have ways to trip me up. The fear of everything unravelling sits quietly on my shoulder. It’s a bad day. I’m still grieving. I hope for better.