On Chronic Illness

On Chronic Illness.

“[W]e cease to be soldiers in the army of the upright; we become deserters. They march to battle. We float with the sticks on the stream; helter-skelter with the dead leaves on the lawn, irresponsible and disinterested and able, perhaps for the first time for years, to look round, to look up—to look, for example, at the sky.” ―Virginia Woolf, On Being Ill

Me 'n' my silly face enjoying a cloudy day in Deep Cove
Photo by Vivienne McMaster

I've touched on this topic a little bit in public places, I wrote a piece for a book called Stay Solid about my discovery of the affects of my own chronic pain on my mental health, and I've posted a few times publicly talking about my “chronic illness” but I wanted to talk about it a little bit more in depth on here, for those who are interested, or for folks who may be in a similar boat to me and who may, like me, find comfort in the words of others sharing a similar journey.

I'm 27 and I've had chronic pain since I was 4 years old.

We didn't know what it was for the vast marjoirty of my life. Doctor's visits and family's sympethetic ears didn't do much to help me get a diagnosis or to help manage my pain. I suffered silently with disabiling bladder pain my whole life, until I was in my early twenties and finally found a urologist who didn't manhandle, belittle or abuse me like the other ones did. Instead I found a urologist who listened and diagnosed me on the spot with a small physical test. He said “I'm sure of it, you have Interstitial Cystits”. He stood by me while I cried huge sobs of tears, and he was incredibly kind. I met with him a total of two times and I can credit him with a big chunk of my current state of wellness.

He had the power to understand what was happening with me, and he used it to make me feel seen, truly seen. Someone who looked at me and saw what I had been through, the affect of the pain for 20 years, he saw how hard my life had been. But he didn't pity me and almost immediately he handed me words of hope, stories of recovery and wellness.

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So, what does interstitial cystitis do? What's it mean? Well, it means your bladder hurts. Like a lot. I've read articles where they liken IC flare ups to late stage renal failure. Wheee! People are often completely disabled by this disease, (for example, one of the methods of treatment is to completely remove the bladder!). I was lucky and my treatment has been almost entirely successful at managing it with diet changes and physiotherapy.

I am other types of sick too I've had Fibromyalgia symptoms since I was 16 years old, Depression diagnosed since I was 15... IBS started around that time too, and a whole other pile of generic body complaints, rotator cuff injury, thoracic nerve outlet syndrome, plantar fasciitis, some sort of 

sciatica-related tendon messup, and a completely fucked up right knee... (the list is long and so I'll stop there).

A lot happens to your brain when you're in chronic pain. You sort of age quicker than those who are pain-free. There are all sorts of physiological and psychological affects. My life has looked a lot different than those who have grown up pain-free.

I have never been pain-free.

Why am I writing so publically about this? Well, I am still sick, and it feels important that I don't hide that part of me. Honestly, I don't need to talk about it often (I have such an incredible crew of kin who take care of me needing to talk about this kind of stuff when it comes up) but the complete lack of sharing this information about myself feels like lying about who I am. This is such an important part of my identity.

I always wish for a world where people with chronic illnesses get treated with respect and dignity, that they are welcomed in to the world as they are and that they grow deep bonds within their community. One of my very deepest most core values is Friendship, and I believe that friendship for someone with chronic illness (for this person with chronic illness at least) is essential and vital. And I'm grateful for my few people in my life who see me as I am (all messy and swollen and sick) and are solidly still by my side. My kin who have my back in this good hard world.

And after all of that I want to say that although I'll likely never be able-bodied, I am well! I live my life making sure I am living as closely aligned with my beliefs as I can be, and I take good care of myself. Although I often have a lot less hours in the day compared to able-bodied people, and I work a lot slower, but I am happy in my struggles, happy with the wholehearted life I have carved out (with help of friends and family!) of the trauma and pain I was given.

So consider that a short, heavy part of my story, visible to those who are curious.

Sending much love from my garden-suite in East Vancouver! With Bean-cat all curled up in between my arms as I write this.

Signing off,

~ Sylvia McFadden

14 comments chronic illness, chronic pain, fibre, friendship, happiness, hope, joy, knitting, knitwear design, knitwear designer, love, spoon theory, spoonie

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