It’s not you, it’s my illness

Posted in Uncategorized by Catherine

I wrote this piece a couple of weeks ago and then since it seemed so personal I was hesitant about posting it. Instead, I sent it to The Mighty, because naturally when you’re feeling a bit shy the logical thing to do is expose yourself to an even wider audience. I know it seems a bit counter intuitive, but it felt more anonymous that way. The response I received, though, made it clear that I’m not the only one who feels this way, and since I happen to be feeling this way today, I’ve decided to now share it here.

Loving someone with a chronic illness comes with some extra challenges. Illness is unpredictable, and the important people in our lives understand this. They learn to be flexible and accommodating and we love them for it.

While it might be easy to understand why we’re not always up to going out or carrying on conversations for hours at a time, it’s harder to understand why we might not want your company at all. It’s hard to understand why we might not want you to come help us around the house or give us a ride to an appointment. You’re trying to make our lives easier and we’re pushing you away. It might not make sense to you, so let’s talk about it.

Those of us with chronic illnesses are used to carrying on with life while feeling unwell. We have to, because the unwell part isn’t going anywhere.

You will see me when I don’t feel well, otherwise you would never see me. Sometimes when you see me I’ll be feeling decent enough to be cheerful and bubbly, and I’ll smile in a way that brightens up my whole face. I’ll be able to crack jokes and be engaged in conversation. Other times I’ll seem tired. I’ll still smile, but if you’re watching closely my eyes will give away my fatigue, and you might notice me sitting down or leaning against the nearest surface. And sometimes when you see me I won’t be able to fake it very well. You’ll hear me run out of air while I’m talking and our conversation might be disjointed because I’m so overwhelmed by how sick I’m feeling that I have no idea what you just said. I’ll be trying really hard to hold still so as not to draw attention to myself, but I’ll become increasingly fidgety.

And for the most part, that’s the worst you’ll see me. But it doesn’t end there. You don’t see it because I don’t let you, but it gets worse.

Sometimes I’m too nauseous to sputter out more than a few words, and I sit with my trash basket in my lap because I can’t stop retching. Sometimes I’m so tired I feel like I can’t even hold my own head up. Sometimes I’m scared to stand up or move at all because my head feels so disconnected from the rest of my body that I don’t feel safe on my own two feet. And sometimes I can’t stay still, fidgeting and squirming non-stop because I just feel so sick that I cannot even handle being in my body right then. There are times when being sick is so completely consuming that it takes all of my energy to make it through the next minute, and then the next, and I just cannot focus on anything else.

You won’t see me like that because those are the times when I try to hide away from the real world, isolating myself behind a closed door while I wait it out. Very few people see me like that because I don’t want them around. I don’t even want my mother, the person I trust most in this world, to be around when I feel like that. At times it is unavoidable if I get caught off guard or if I’m too sick to handle it myself, but I do what I can to keep that side of my illness hidden.

This might sound backwards to you. You might think that times like these are when you want people by your side the most. But no. I don’t want you to see me like that.

Part of that is for your sake. I don’t want you to feel uncomfortable, and I don’t know that it’s possible to watch another person feel so terrible without feeling uncomfortable. In the midst of the awfulness I will be thinking about how horrible it is that my illness is spilling over into your life. I know that seeing me so sick will make you worry and feel badly for me and I will feel the need to protect you from that. I will want to pretend that I’m OK for you, but I won’t be able to because in that moment I’m not OK. I will be OK in time, and I will be able to tell you that, but having to tell you that takes focus and energy, every ounce of which I need to just get through it.

And part of it is for my sake. Feeling so unwell to the point of just not even knowing how to handle being in your body anymore is a very personal thing. It makes you feel incredibly vulnerable. Exposed. Helpless. Raw. It feels like you are naked and people are staring at you but there is nothing around you can use to cover up. In that moment, your body is the one in control, not you. And that’s scary. Feeling that way is hard enough; knowing you can see me feeling that way is too much.

So I don’t always want your company, and at times I decline your help. I don’t always let you see my face or hear my voice, and it has nothing to do with you and everything to do with me and the way my illness sometimes consumes me. I promise I will gladly accept both your company and your help when I’m ready. I don’t need to be at my best, but I do need to not be at my worst.

There’s one last thing we should talk about. Even when I don’t want you there, it helps to know you will be there when I’m ready. And I love you for that. Thank you for being within reach.

30Oct2015

Dear new doctor…actually scratch that formal dear business

Posted in Uncategorized by Catherine

You can read an updated, more universal version of this piece over at The Mighty.

I read this article written from a doctor’s perspective earlier this week and while none of it was a surprise to read, it really resonated with me. Since having recently learned that my family doctor of 23 years is retiring at the end of this year (with no one to replace her…eek!), I’ve been thinking a lot about the whole dynamic between doctors and chronic illness patients. So, of course, I put those thoughts into words.

Dear new doctor,

…Actually scratch that formal “dear” business. I tend to use a more familiar greeting when writing letters to anyone who is privy to the inner workings of my intestines and my ovaries…because of course I write a lot of letters to people about those very topics and thus have determined that a more familiar greeting is appropriate…

You don’t know me yet, so let me just clarify that I’m kidding. I don’t actually write letters to people about such things.

So anyway!

Hi new family doctor!

I am sincerely pleased to meet you. Even though I’ve seen a lot of doctors before you, I’m excited by the possibility that you might have ideas and options for me that no one has ever mentioned.

I’ve got to say, though, I’m also rather apprehensive.

You’ve probably noticed by now that my chart is fairly…uh…lengthy…and you might be wondering what you are getting yourself into by accepting me as your patient. I’m not the kind of patient that can be easily fixed and I know that can be really disheartening and frustrating. I get disheartened and frustrated, too. Look at that! We have something in common!

Here’s what I want you to know about being my doctor.

I don’t expect you to already know much about my illnesses, and actually it’s very possible that right now I know more about them than you do. Please be okay with that. Consult the internet or talk to other doctors to learn more if you want, but when it comes to understanding how my illnesses affect my life, talk to me. And even if you are already familiar with managing these conditions, don’t forget that my body didn’t read the textbook chapter on “how to have gastroparesis, POTS and EDS” before it decided to get sick so it might not follow all the rules.

Keep in mind that the 10 minutes in which you see me is just a snapshot of my life. You might see me at my best or you might see me at my worst, but most of the time you’ll probably see me somewhere in between. Please don’t make assumptions about how I am doing based on whatever snapshot you happen to capture that day. Just as my frown does not imply the presence of depression or defeat, my smile does not imply the absence of worry or pain. I smile a lot. I laugh a lot. But I still understand my reality, and I need you to understand it, too.

You might be scared of me because I have a chronic illness, but you should know I’m scared of you for the same reason, because I have a chronic illness. I’m scared you won’t trust my instincts and will treat my concerns as overreactions. I’m scared you might confuse not being able to fix me with not being able to help me at all and then give up. I’m scared you will think I’m lazy or just not trying hard enough. You see, I can be as well-informed, empowered and proactive as I want, but I have no power. I can’t prescribe meds, order tests or make referrals. I need you for that. I have the day-to-day-living-in-this-body experience thing going for me, while you have the foundation and education, and you have the years of experience treating other patients. I know that you can see things I can’t because you are not living it day to day, and I respect that. I hope you will try to see things through my eyes, too.

I know that you are human and I promise not to hold that against you. I know you make mistakes and I’m okay with that. Sometimes I’ll catch your oversight, but that doesn’t mean you aren’t doing your job as my doctor, it just means that I’m doing my job as a well-informed patient. I know you won’t always have the answers and I’m okay with that, too. I don’t expect you to know everything, but please be honest with me about it instead of giving me a confusing and round-about answer. I also know that you won’t always be able to help me. Sometimes at the end of an appointment you will feel helpless. That’s okay. The next appointment will be better.

But I’m human, too, and sometimes I get defeated. Because I know that things could be worse, sometimes I forget that I’m allowed to wish things were better. And sometimes I stop fighting for them to be better. I lose hope. I need you to fight for me when that happens. Remind me what determination and perseverance look like.

Please know that I will always appreciate you giving your time to help me. I know it’s your job, but I’m grateful all the same. I see a lot of doctors, but I know that you are the one with the most comprehensive view. You are the one looking at the big picture and you are the one keeping me from falling through the cracks. I know there will be lots of trial and error, confusion, and paperwork…and I’m really sorry about the paperwork…but there will also be successes and milestones. And joy. No matter what is happening, no matter how sick or healthy I am, I promise you there will still be joy.

That doesn’t sound so bad, right?

Oh, and just in case it helps, I also come with a free supply of dishcloths, hats and scarves.

2Oct2015

Faces of invisible illness

Posted in Uncategorized by Catherine

Life with chronic illness has changed so much because of the internet. Between blogs, Facebook groups and hashtags, you can always find someone facing the same challenges as you and feeling the same jumble of emotions. It might sound really strange to a lot of you, but some of my closest friends I have never actually seen face to face. Many of them I don’t even know what their voices sound like! When you live out in the real world and are able to go to school, maintain a job and go out with friends, your friends live out in the real world with you. But when all of that slips away and you find yourself seeing your doctors more often than your peers, a lot of your friends start to live in your computer.

One of my favourite people in this world lives in my phone and my computer. Okay, she actually lives in Pennsylvania, but within the realm of our friendship, she lives in my phone and my computer. We’re less than a year apart, we’re in very similar health situations, we led very similar pre-sick lives and most importantly, we get each other. Normally, I would now show you a picture of us together, but we’ve never met! At least not yet.

Day to day, Leah and I crack a lot of jokes, use a lot of sarcasm, and share a lot of memes and cute polar bear videos to help us deal with everything, but we also help each other acknowledge and accept our situations. Earlier this year we were having a late night conversation about the realities of being young and living with chronic illness when Leah said, “Hey, we should turn this into a free verse poem,” and I said, “Okay!”

Then this happened.

And then we decided to take it one step further. A few weeks ago I suggested that we re-share this piece for Invisible Illness Awareness Week, which, by the way, is happening right now. She said, “Yeah! Why don’t we make a video and see if we can get some other illness bloggers involved?” and once again I said, “Okay!”

Then, after a lot of emails and a lot of cooperation from a lot of awesome people, this happened.

When we first published this piece all those months ago, it was really intimidating! We usually try to keep things light. We tend to downplay how hard it can be. We like to end things on a positive note. But these words? These words are blunt. These words are stripped down. These words are real.

Keeping things light, finding the positive, and focusing on gratitude? That’s still real, too. It’s not all one or the other, and part of how we cope with our chronic conditions is acknowledging both sides. Since we can’t expect anyone else to understand that scarier side unless we talk about, that’s what we decided to do. We decided to share the faces and voices behind our words. And we decided to invite some of our friends and/or favourite chronic illness bloggers to help us.

A huge thank you to everyone who helped us out with this project! We know it was out of a lot of your comfort zones (it was out of our comfort zones, too!) but we so appreciate you taking the risk anyway.

And a huge thank you to all of you who took a few minutes to watch this video! You are giving us a voice and that is one of the most meaningful things you can do. That is one of the most important ways you can help us. We didn’t create this video for pity; we simply just want to be heard. So thank you for listening.

Before I go, meet the awesome ladies (in order of appearance) who put themselves out there and helped us make this happen!

Catherine…pretty sure you know where to find me!