Wednesday, January 13, 2016

10 Things I Want You to Know About My Chronic Illness

I’m chronically ill, did you know that? If you didn’t, you are waaaay behind the curve. But even if you think you know me, here are ten more things I want you to know:

1. Sometimes say: ‘I can’t eat that.’ when you’ve seen me eat it before.
Last time I ate that? Yeah, it made me sick. Probably really sick. If I don’t want to eat it today, it’s because:
A) I don’t want to be sick today.
B) I planned on hanging out with you for more than an hour after eating and I don’t want you to see me being sick.
C) I knew there wouldn’t be anything I could eat here, so I already ate.

2. I’m in pain.
My day to day pain level is so bad, that I have broken bones in the last 12 months and not known, because my regular pain was more severe than my broken bone pain. If you have known me less than ten years, you’ve never spoken to me, or spent any time with me, while I have been pain free. If I am not super enthusiastic today, the pain is just becoming too distracting for me to focus on you. I’m probably happy to be spending time with you, so please don’t make it shitty by acting hurt I’m not bouncing off the walls.

3. Loud noises and bright lights are pretty awful.
No, I don’t want to hang out in a group. No, I don’t want to be in a busy place. No, I don’t want to be out in the sun. No, I don’t want the volume up any louder. I’m perpetually fighting a migraine and I’m always trying to focus AROUND constant pain. Loud music and flashing lights are the bane of my existence and that’s why I sit in the back row at church, in the darkness. I’m not being anti-social. I’m just fed-up with vomiting in the bathrooms during service.

4. Hanging out with you made me sick for three days.
Or a week. Or a month. Depending on what we did. If I ever TRY and spend time with you, I really, really like you a lot. Even if we just had a quiet coffee in a dark, soundproof room, I spent the next morning on the couch, in too much pain to move. THAT’S HOW MUCH I LOVE YOU.

5. You’ve said something really offensive and I’ve forgiven you.
I can’t think of a single person who I’ve talked to about my illness who hasn’t said something moronic and offensive. I swallowed the desire to smack you in the mouth and got over it. I know you meant well. And if you think: ‘well, she doesn’t mean me’, I do. I mean you, personally.

6. I pretty much always want to chat via text.
Facebook, skype, email. If you’re ever wondering if I want to hear from you, I do. Being chronically ill means being isolated for all the above reasons. I often have bad days and imagine that everyone has forgotten I exist and if I am very lucky, someone messages me on those days. I don’t want to chat on the phone all that much though, because talking hurts my jaw. So does eating. And laughing. My phone is on silent for a reason.

7. Sometimes I say really weird shit.
I take a lot of medications and when I have a migraine my thoughts get very muddled. I can say some very weird stuff. I can think of a few people who have really liked spending time with me, then seen me in the grips of a bad migraine and completely vanished from my life. Don’t be that person. It’s pretty brutal to be on the receiving end of that.

8. I can’t see you very well.
Even wearing glasses, I have double vision a lot and I can’t see in very much in bright lights at all. Most of the time, I identify people by the sound of their voice. This is also why I am covered in bruises and fall down a lot. And why I don’t like walking alone. Door frames are the bane of my existence. If I am very quiet and staying close to you, or let you go first, I am probably secretly using you as a navigation aid.

9. On a bad day, I am helpless.
On my good days, no one knows I am sick, because I am a good liar. On my bad days, I often can’t stand. This means I can’t feed myself, dress myself or even go to the bathroom. I can’t answer the phone. I can’t get my own medication. I can’t get myself a drink or a blanket or the remote or turn on or off the air conditioner unless things are within my reach. I am too fuzzy-headed to take my medication, because I can’t keep track of time and may overdose. I can’t use glass cups or plates. And to make it more frustrating, I often can’t speak clearly, even if I am thinking clearly. So I am unable to communicate my needs to other people. It’s every bit as horrible as it sounds, but actually after a few years you get used to it.

10. I have to plan everything to the last detail.
Because of all of the things I have just listed, everything in my life has to be planned. Perfectly. All my meals have to be planned. Regular trips to the doctor have to be planned. Trips to the chemist and grocery store have to be planned. Social visits have to be planned. Particularly strenuous tasks like stripping my sheets, washing them and remaking my bed have to be planned, literally days in advance, so I have the energy to do them without making myself too sick. I can really only leave the house once a week, twice, if someone else is doing my shopping and some of the cleaning. Just being alive is a full time job, staying fed, clean and upright require 24/7 organisation and planning. The fact that I also get things done, like writing and editing, means I sacrifice heath, I sacrifice a social life, I sacrifice nice food and settle for eating a cup of frozen peas. But fuck you if you pity me, because I’m probably getting more important stuff done than you anyway.

So what do I want you to take from this?

Firstly, I probably like you a lot more than you think I do.

Secondly, I get so many movies and documentaries watched because I literally can’t move. Stop being jealous.

Thirdly, I am a lot sicker than you thought I was, but I am rockin’ it. I am a lean, mean productivity machine because what you think I am getting done in a week, I am probably getting done in about four hours.

Fourthly, you can talk to me about this stuff. I’m not afraid to answer your questions. I’m not sad or ashamed about my illness. Sometimes it’s gross and horrifying, but welcome to Earth, planet of the gross and horrifying stuff.  And I am Gross and Horrifying Queen of my Domain.


  1. Wow.
    Thanks for sharing that.
    I wish you hadn't had to pioneer the path I am now discovering some of for myself. Your coping skills are way beyond mine, for sure.

    1. Any time you want to vent to someone who understands, hit me up.

  2. Thank you for sharing this.

    As someone juggling a few chronic conditions (none of which are as severe as what you've described), I empathise with your struggle. Please let me know if I ever say something stupid or offensive; it's a learning process.

    I'm grateful for the time we've spent hanging out. Here's hoping we can do that again sometime, and that there's a light at the end of your tunnel some day. You rock. Keep rocking.


    1. Every few weeks I hope I'm going to get in to the city to socialize, but I never do. At least now you know why!

  3. A great idea to document you reality in this way for the benefit of friends, family and acquaintances. This puts your recent blog on your productivity into a totally new perspective. I trust your motivation and your endurance spills on to the page to inspire your writing and help you to create epic tales that will move the world. I take my hat off to you.

    1. Thank you! Its already been a year of brutal honesty for me, particularly here on the blog, where anyone can just come and read it. I've been glad everyone has received it so well.

  4. Dear friend,thankyou for enlightening me as to what you personally have to deal with,it was good in that it helps us all to be a little more understanding and compassionate regarding your circumstances! And to be able to see things more from your perspective in order to show you ever courtesy and respect you deserve,the goals of friends should always be to help one another and grow alongside one another despite the difficulties that can surround us and challenge a friendship,you have helped me and inspired me to learn to love who I am and to accept myself for being transgender,your have much to offer in ways of instilling confidence in others and being the best anyone can be as a friend! I cherish the brief moments in chat we have which are up building and encouraging,I look forward to our friendship growing even stronger as a result and thankyou for being a
    Part of my life so far. CHELSEA WOOD.