Life with chronic illness

I've been biting my tongue on this for so long... I know how some of it is going to sound. No, really, I know. People just don't say these things, or maybe they don't think about them or realize at all. It's very real though. There is a hierarchy of illness, and it leads to massive inequality among people who are sick. It leads to unthinkable hardship for those who have the "wrong" kind of illness. It's like some form of sickness-ism (discrimination of sick people based on exactly which type of illness they have).

My friend Stephanie summed up life with ongoing illness so well:

"It's very upsetting to wake up day after day with hopes and plans and dreams and be completely unable to do any of them."

I quoted what she'd written on Facebook, followed by my own addition:

I often think about how lucky most people are to just be able to do what they want without such immense and non-negotiable restrictions. I don't think I even remember what that's like anymore.

That I can usually cope with. What's hard to cope with, what makes me really sad, is how people who haven't been through this can't understand it. They still believe somehow it's a choice. That if I really wanted to, I could just do things. That the barriers are only psychological (and I don't mean mental illness, I mean lack of will or motivation).

I will never be able to understand how anyone could truly believe that someone, that I, would choose to live like this.

But this problem is a symptom. I've been thinking about why this mentality exists, and that's my conclusion - it's a symptom... of the hierarchy of illness.

Last week, I wrote this long blathery post about navigating friendship with chronic illness. Then I sat on it for several days. I'm still sitting on it. Something about it didn't quite feel right...

Friendships, or really any relationships, and how they last or don't doesn't actually have much to do with whether you're chronically ill or not. Chronic illness is just one among the many things that can make or break any close relationships - things like going through a breakup, a divorce, a death in the family, a major career change, financial woes, the birth of a child... Anything that shakes you out of your routine and your comfort zone, and pushes you into the unknown, into grief and loss, or the new and unfamiliar. Anything that makes your life afterwards somewhat (or very) unrecognizable.

I've lost a LOT of friends over the past five years. If I started listing them all, I might have a full on self-hate and shame meltdown. ("It must be me!!!!" "What will people think????") It'd be like having a scarlet letter on my sweater - except F for Failed Friend.

The thing is - it is me, not them. Yes, me. My unwillingness to be taken advantage of. My unwillingness for a relationship to be completely on another person's terms. My failing tolerance of my kindness being taken for granted. My finally standing up for myself, and learning that I am worthy enough not to go chasing and pandering after people who don't really care about me the way I deserve.

It's been a while now since I've come out of denial about my illness. I've had some time to at least begin to grieve the losses that have come with it. Friends, family, future plans, hobbies... my loss list is long and detailed. I have also been able to receive some gifts from my illness - it's not all loss. But the gifts don't make the loss any less real, any less difficult.

One of the bigger things I've lost is my ability to be gainfully employed. I haven't been able to work even part time in over two years. All the shame, judgment, and social implications aside, there is something that feels degrading about having my daily purpose and to an extent, my financial independence stripped away. These have probably been the hardest for me to adapt to. And yet, adapt I must and I will!

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Me, at peace, making art in my home studio, 2013
I want to maintain this elusive calm in my work life

Update March 2015: Strange twist... I finally saw my (old) immunologist who I trust very much, and without getting into all the details, it turns out that the "allergist" who did the test that led to my supposedly being glycerin sensitive wasn't actually a certified allergist at all. The test that was done was not standard and the reaction was simple skin irritation (not an allergic response). After about 10 months of avoidance, I've started using glycerin-containing products again with no problems.

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Delving into the waaaaaay obscure health topics here folks, this probably won't interest most of you. But some of my most obscure and specific health posts are the most viewed ones on here by a long shot, so I know that people are looking for this info. I wished so much that I had access to a post like this, so I spent some time writing it up for whoever is next to be in this sticky situation.

A while back, I attempted to get some allergy testing done, and came out of it not even having had the tests done, and instead labeled with a glycerin sensitivity. I'm going to save all the sordid details of this, maybe for some other time (I still have to go through some further investigations to figure out what's going on), but the long and short of it is that since then I've had to remove glycerin containing products from my life as much as possible. (The only things I haven't found replacements for and am still using are quite ironically my antihistamine pills, Reactine, and cortisone cream. There is a "Cortate ointment" petroleum based alternative, but I don't find it works as well.)

You would not believe how many personal care products, soaps, and medications have glycerin in them, it's RIDICULOUS. Not exagerating, probably 99% or more. It's safe to say I have been slathering myself in copious amounts of glycerin for most of my life - which is hopefully a good sign that my sensitivity isn't terribly severe, but it may have been impacting the overall burden on my body. It's extremely hard to find products that don't have it, and it's not only inconvenient but incredibly expensive, suddenly having to replace everything you own with more obscure and pricier products.

Limits. We don't like them. We don't want to be told by anyone - not even ourselves - what we can or can't do. That each of us will eventually hit a wall at some point.

While working on my previous post on illness and beauty/body image, I had several conversations with different friends, and one of the topics that people kept really honing in on was denial. An email exchange with a friend turned into a long rant on my part, and I thought it was worth sharing, so I've fleshed it out into this post - I feel like it's a very important awareness to develop.

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~ Let your loss set you free Heartgirl by Ariane K ~

Health is not binary. People who are chronically and/or mentally ill may indeed be "sick" (a term with a huge amount of complexity in its own right), but we are not on any given day A) sick or B) not sick. These conditions can be lifelong or last many years, going through flares and remissions. But we are not just "sick", we are people with hobbies, partners, friends, and if possible, jobs. Our illness(es) may feel all encompassing at times, but they are not us. They are only a part of us - people who are just as complex and nuanced as any. And yet, it seems at times that there are absurd standards, perceptions, and expectations about what someone who is "sick" looks like. This only exacerbates our already complicated relationships with our bodies.

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I did it! It's real! The first six Heartgirl prints are up in my Etsy shop!!!

Heartgirl prints on Etsy

You guys, I don't even know where to begin. This is SUCH a big accomplishment for me. I've dreamt of "being a real artist" for such a long time... As much as I've done art since I was old enough to hold a paintbrush, and even sold the odd painting or sewn item back in university, I was convinced it was just something I did as a hobby to pass the time.

But it isn't just a hobby - it's MY THING. It's always been my thing. And as incredibly challenging as it's been, I've finally squashed my serious case of impostor syndrome... I AM AN ARTIST!

I've been super duper laid out with a chronic illness flare for the last couple weeks, and as I've embarked on a Facebook fast, I guess I'm posting more here instead when I have things to say! 

For better or worse I usually use FB to kind of numb out and passively entertain myself when I'm not feeling well, so this has been a real challenge - I even let myself off the hook for a few of the worst days, cause frankly I wasn't actually losing any time to do more productive things. But I also use FB to stay in touch with friends, as do many people with chronic illnesses who can't get out and socialize in person as much as they'd like. Communicating online can be a huge way to avoid feeling completely socially isolated when you're sick a lot.

There has recently been a lot of discussion among the politically engaged residents of Grandview Woodlands about what an improved Commercial Drive would look like. The timing of this, during the extended time for sorting out the city's long term development plan for Grandview Woodlands, is critical as it could help set the tone for the next several decades of change for The Drive.

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This conversation was sparked by a new group that formed recently, the "Commercial Drive Action Group" (who now have a Facebook group called "Commercial Drive for Everyone", which the organizer initially presented to GWAC (Grandview Woodland Area Council) meeting attendees as a group interested in making The Drive more bike-friendly. My understanding is that now the mission is broadening to generally focusing on more people (vs. car) friendly movement around the area, slightly less specific to cycling. The timing of this, during the extended time for sorting out the city's long term development plan for Grandview Woodlands, is critical as it could help set the tone for the next several decades of change for The Drive

The day has finally arrived... 

Issue 2 of Chronically Yours is finished and for sale!

It's taken me a whole year to get this issue done... I've been kind of preoccupied, ironically, dealing with my health and wellbeing! Slowly, but surely, I've been working away at it, and after a little stapling party, it's done!

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