This is a post a wrote recently for the When Lambs Are Silent blog about the need to preemptive thinking when it comes to disability and accessibility.
Chronic illness is hard.
Not just the constant battle of pain, nor the exhaustion and physical toll the illness takes.
It affects my body, but also my soul and mind. It is the constant grief cycle that I seem to be stuck in that sucks my spiritual and mental energy until I feel like I am nothing but my illness. I am more than just tired. I feel defeated.
I am defeated by the grief cycle. Every time I feel that I have come to a place of acceptance, I find myself swung right back into the path of anger, frustration, sadness, and anxiety.
I am defeated by the incomprehensible nature of my illness. Just when I think I understand my illness, I find a new symptom hits.
I am defeated by the smallest aspects of life. I am overwhelmed by the smallest tasks, just trying to keep the house clean, or trying to stay in touch with friends. Last night I nearly had a panic attack at the thought of catching up with people on zoom.
I am defeated by what I wish I could do. I remember days of working, running my own business, travelling to speaking engagements, and writing articles, and I look at my life now and it seems so empty and yet so much more difficult.
I am defeated by who I want to be. I want to have the energy to go for 5k walks with my dog. I want to not look at the chores in my house and feel exhausted.
I am defeated by my own fears. What if I get worse? What if my husband gets sick of having a sick wife? What if I don’t ever have a good day again? What if i have to close down my online church because I no longer have the strength to run it?
I am defeated by my anger. I hate this! I don’t want to live like this! I don’t want to feel so angry and sad and frustrated! I am a happy, optimistic person, not this scared, angry person.
I am defeated by the comparison game. There are people worse off than me, so surely I shouldn’t complain. Even though what is happening to me is my worst, not someone else’s, and that is legitimate. Even thought I tell people off for playing the comparison game. Even thought I know I am wrong in my thinking.
Today my soul aches. Today I feel defeated.
And yet I am not defeated. I am not so broken that I cannot keep putting one step in front of the other. God is not far from me in this and I cry out knowing that I am heard, that God cries with and for me. I am NOT defeated.
But today, I feel it, and those feelings are legitimate.
What I say - “Yeah I am doing ok”
What I Mean - today I am out of bed and that feels like a miracle. I still hurt in my brain, my eyes are still sore and I am trying my hardest to concentrate on what you are saying, but compared to how I have been, this pain is bearable. I am desperate to get out of my bed and out of the house and so even if the pain gets worse I may stay out. This doesn’t mean I am faking my pain, it means I am faking my ok-ness. The reality is m, an ok day for me would have most people in bed.
What I say - “my migraines have been playing up recently”
What I mean - I am in constant pain. My head feels like it has literal bombs going off in it and I fight a daily war with myself over self worth. I fight to stay positive and remain upbeat. I fight to get out of bed and function. I feel like I am at war with my own body. I don’t know if there is any relief out there for me and I am trying to stay hopeful while also accepting what is. It is hard and I have days where I just want to cry with frustration, but don’t coz that will hurt my head.
What I say - “thanks for that idea, I will try it out”
What I mean - it have tried it. I have tried all the ‘its’. I don’t wanna come across as a dick or ungrateful that you care so I say I will give it a go but I have been there, done that, got the shirt. Dairy free? Done it. Gluten free? Yep. Sugar free? Uh huh. Essential oils? Naturopath? Medication a, b , and c right though to z. Hot baths, cold showers, piercings, massage....I. Have. Tried. It.
What I say - “wow that’s an interesting story”
What I mean - I don’t want to hear about your friend with a tumour, a stroke, a seizure, migraines for 25 years. I don’t want to hear about their miracle cure or what helped them. It either freaks me out or makes me depressed. I can’t handle it so please don’t tell me.
What I say - “prayer is always good, thanks for praying”.
What I mean - I believe in prayer as much as any christian. I believe God can heal. But unless you have a word from God that I will be healed, pray instead for my peace of mind and for strength. Praying for my healing and then being disappointed when it doesn’t happen actually makes things harder for me. It makes me feel like I have failed you and God. It makes me feel like I am doing something wrong. Belief and faith are two separate things. Believe God can heal, but unless you have the absolute faith certainty that he will, I have a list of other things you can pray for. And if you say you will pray for me, actually pray for me. Don’t just give me lip service. And if you don’t pray or aren’t a Christian or whatever, then it’s ok. Don’t say it if you don’t mean it.
What I say - “I am learning to accept this as part of my life”
What I mean - I am learning to accept this as part of my life. I am not defeated and giving up but I need to accept that this is. Please accept that it is ok for me to do that.
Since yesterday I have been really bothered by something. It seems like a small, inconsequential thing, but I realise it speaks to something so much bigger.
My husband is sick with a cold/flu bug. On my way home from work I stopped off at the chemist to get him medication. The chemist assistant asked if I needed anything and I told her that I needed cold pills for my husband. “Man flu?” she laughed. “He’s probably dying” I joked. And that was it. Just a couple of passing comments in the course of a day. Nothing to worry about.
But it is bugging me. I realised afterwards that I had talked about my husband like he was a big baby that was overreacting. He isn’t; he hardly ever gets sick and when he does it is usually pretty rough. I don’t think he has a made up flu or is looking for sympathy. I don’t believe he can’t handle sickness as well as I can. In fact, I don’t believe ‘man flu’ is anything but sexism.
If my husband talked to another man about how emotional I was being because I was on my period, or how I was overreacting to something because I was an emotional woman, I would be absolutely furious. I would tell him that he was perpetuating stereotypes. I would explain how simple jokes speak to something bigger in our society about how women should be viewed and treated. He would never talk about me this way, so why did I make jokes about him?
Our society has taught us that men are big babies. They get ‘man flu’, ads tell us that men can’t look after their own children properly, that they are slobs if women aren’t there to tell them off. We have relegated them to useless, stupid, uncaring children that need contestant supervision.
And so we eye roll and laugh and make jokes, and never once think about how much we hate it when men do the same to us. And then we are surprised when men in society accept that role and become dead beat dads, uncaring and thoughtless. Can we really complain about it when we don’t expect and ask for better?
so to my amazing Luke, I am sorry I laughed. I am sorry that I didn’t turn to the lady and say “actually my husband is sick, not faking or complaining”. I am sorry I perpetuated a stereotype that treats you as less able than your wife. I will try and do better. I will try and speak of you only as I see you and know you. I will speak of you with the same respect that I would want you to speak of me.
I demand better of myself.
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