Rise Above the Bulls**t - Part 9 - Top 10 Guide to Coping with Chronic Illness

If you'd like to see the introduction to this series, please click here to see part one.


In this series, I’ve talked about various strategies of how to minimize, eliminate or avoid things in your life that could be defined as “bullshit”. People that are not supportive. Doctors that do not care enough. Workplaces that do not consider your needs. Flares in symptoms. The strategies I’ve talked about can work, to a point. I have used all that I mentioned and hand-to-heart – they have made a difference.

However, there’s a certain amount of bullshit that can’t be avoided. Let’s face it – people can be dicks. They can be inconsiderate and rude. They can be bullying and insensitive. They can also be simply ignorant, which is one of the more frustrating forms of bullshit to deal with.

There are other negative experiences in life with chronic illness that I would like to categorize as ‘bullshit’. Taking endless medication. ALWAYS being in pain. Always being fatigued. And no, I don't mean tired. Things in your everyday life that you can’t change, big or small, that can really get you down.

So how do you cope with this part? How do you rise above what you can’t change, can’t control, and can’t always predict? We can’t go yelling at people in the street because they gave us a judgmental look. We can’t refuse to take meds we need to function. We can’t burst into tears about our pain constantly - it's a waste of your limited energy.


This is one of the few times I will use a quote from Buddha to explain how I rise above the bullshit. “Pain is inevitable. Suffering is optional” – Buddha. Now - I’m not Buddhist. I’ve just read a few books on mindfulness practice that tend to take from his teachings. And a few of his phrases stick with me. Thinking about this quote stopped me from using the phrase “I suffer from Ehlers-Danlos Syndrome”. Instead I say, “I live with Ehlers-Danlos Syndrome”. Because even though I’m not perfect at it, and I do allow myself to suffer sometimes, I remind myself of this quote whenever I can. Life carries pain. Life carries bullshit. And sometimes it’s gonna be too much. We’ll suffer and it will seem beyond choice. But a lot of the time, we CAN choose not to suffer. Now this doesn’t mean we have to be smiley, bubbly, and happy all the time. It just means we can be us. We can take whatever enjoyment we can out of each moment. Because the bullshit’s not going anywhere anyway.

I have dealt with a lot of bullshit in the past 4-ish years. I’ve written about being dismissed by doctors and abused by paramedics. I’ve written about being ‘bullied out’ of my previous job. I’ve written about friends forgetting about me. What I haven’t written about are some interesting experiences with strangers on the street. Thankfully, I have never been openly insulted or abused. At least not intentionally. I have had some looks. Definitely. And I will admit they used to get to me. Now – I only notice when it’s super obvious. And I’m never particularly phased.


The most difficult ‘bullshit’ to rise above recently for me might surprise you coming from someone writing from a country that is not known for its religion. While New Zealand celebrates holidays like Christmas and Easter, we don’t have an official religion. We also widely celebrate Diwali, Matariki, and Chinese New Year. Though without the statutory holidays. Christianity is not statistically the dominant religion here. We are a highly diverse nation full of immigrants and Kiwis whose families originate from other countries. We are rich in indigenous culture and do our best not to allow the colonial influence to completely wipe out everything else. At least - most of us.

Yet somehow – I have been stopped in the street several times and prayed for. By Christians. Now a short disclaimer: this is not a rag on Christians. I have nothing against religion of any kind. I think religion can be, and usually is, beautiful. I realize these people are in the extreme minority of nutters and also just happen to be Christian. Let us continue.

I’ll tell you about the top two

A pair of people wanted to heal me with the love of Jesus, and film it for Youtube. They were clearly running a business and profiting off people’s faith. Whether or not they even had faith themselves is questionable to me, because I don’t know any religion that tells you to make money off others' misfortune. They simply saw me on my crutches, asked me if I was in pain, and tried to convince me they could cure it. Now I don’t know about you, but a couple of Jesus’ servants with a camera and the will to make money from Youtube versus a spinal disc tear and nerve compression in the body of someone with Ehlers-Danlos Syndrome are a pretty uneven match. I had my doubts. I politely declined their offer.

The second was a woefully misguided young woman who seemed to have learned her full vocabulary from the Holy Bible. Even after ‘asking permission’ and NOT receiving it, she went on to say that Jesus loves me, and Jesus loves even those who are maimed and not whole, and a better life is coming for me after this one. This was potentially very upsetting. She essentially told me my disability rendered me “maimed”. And reading between the lines, that I would be better off dead. That was my interpretation, given I am not religious and have no context as to where that quote came from. It is rude beyond measure to say something like that to someone in the street who has just said they do not need praying for. Who is not familiar with the origin of the words. It may have had some context and deeper meaning to her, however to someone like me it just sounds like one big slap in the face.


The surprising thing was – I found after both of these instances – I just laughed. I mean, I could’ve been mightily upset at having such aspersions cast against me. Someone had attempted to make me the victim of a money-making scam. I had been told my life was essentially worthless because my being maimed. Talk about Ablest. But I had that quote swimming somewhere at the back of my mind. “Suffering is optional”. I chose not to suffer. I chose to recognize that I had accidentally crossed the path of these misguided individuals, and that my crutches made my disability more visible, so this was bound to happen. And that was OK. It wasn’t “unfair” or “traumatizing”. It was just a couple of weird encounters.

Now – I know it’s not realistic to be able to “choose” not to suffer every time bullshit comes your way. Heck – when I’m lying in bed at 1am and the pain killers haven’t worked and I’ve got the migraine from hell – yeah – I’m suffering. And that’s OK. All I want you to take away from this is that the more times you can choose not to suffer, the more you rise above that bullshit. The more weight will lift off your shoulders. The easier this whole shitstorm will be to cope with.


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