Monthly Archives: May 2012

Seven words I’ve come to hate. When you’re sick, it’s then you come to realise the people who really prioritise you. The people who no matter how busy they are, find the time. And, you become aware of just what the flip side of a cancellation feels like.

Before I go on, I want to write a disclaimer, this post is not meant to be a passive aggressive dig at anyone. I don’t want anyone who personally knows me to read this, thinking it is an attempt to guilt trip them.

Making funny faces when my best friend Non came to visit

It’s easy to become bitter at everyone who cancels visits and even more so at the ones that never plan a visit or even text. Especially because, for me, like most people, when someone is coming visit I plan my energy accordingly and a visit is the highlight of my day, maybe even that week, I get so excited and look forward to it so much. For that person, it’s just one little thing they had to cancel, for me, it feels like they’ve cancelled my birthday party. When someone does actually come to visit, for them it’s just an hour or two, for me, it means more than I can currently make my brain think to express.

I’ve come to develop a kind of desperation for people to come visit. I feel like a clingy girlfriend, trying to act hard to get, but actually waiting by the phone, willing it to ring. I have one friend who has come for coffee on a regular basis since I’ve gotten really ill again, but she went home for the summer yesterday. And now, I feel like I’m looking at a long empty couple of months until September.

I tried to avoid feeling like this when I got ill this time. To not get tearful when I think about stuff like this, but it’s like fighting against the tide. I was hesitant to write this blog post because I’ve tried to explain this enough times to know what follows is a semi-patronising speech about how easy it is to become self-involved when you’re sick, and that it’s nothing personal when people cancel or utter the dreaded seven words but never actually get in touch, because it’s just that people have their own lives and are busy. As if having been stuck at home in bed so many times in the last 7 years, I wouldn’t have worked this out.

I completely understand that people have jobs, families, other friends, I’m not that out of touch with the real world. I wouldn’t expect to be anyone’s top priority, except Paul’s, but we all make priority choices on how to spend our time. There are many reasons why I wouldn’t make the priority list, but no matter how you slice it, the hard truth is, sick people never make the list. I’m the last person people catch up with because they don’t have to sync their diaries with me, I’m always in the same place- my bed. Being the last person to see means I’m usually the one to be cancelled on. I’m always free another time. And, let’s face it. What do people get out of seeing me? It’s not like people come to visit because they need to discuss something or make plans.

The women in my Church gave me ’7 Days of Loving’ which culminated in this amazing bunch of flowers on the 8th day. It succeeded in making me feel so loved and special. I wish every sick person could get this from their friends.

Some of you may see this post as somewhat negative, perhaps the ramblings of a depressed person having a bad day. I wish that were true, not necessarily for myself, but because I know there are thousands of sick people who are desperately lonely because of the fact that people don’t prioritise visiting them. Their self-esteem is on the floor because their friends don’t call, like they always say they will, their family always promise they’ll come visit, just as soon as that busy thing is out the way, but the calendar remains empty. I’ve been in bed for months now, but aside from the friend mentioned above, I’ve only had one visit each from three friends. In fact even my best friend, who lives in Kent has managed to visit more than my friends who live in the same city as me. The big exception to the rule this time was the amazing ’7 days of loving’ I had from the women at my Church. I appreciated that so much, and it made me feel so special and entertained (most days had an activity), I know how very lucky I was to have got that, but it hasn’t stopped my loneliness. I don’t want to sound ungrateful in this post, but, that week is the exception, rather than the rule. I’m not writing this post to air my grievances (I wouldn’t do it this way), like I’ve already said a million times, I’m giving a real representation of what it is like to live with a chronic illness. I can’t profess to do that without tackling the big issues, even if they offend some people.

It’s actually because of how lonely I was when I was first ill with M.E. that I started writing letters. My parents still had to work so I didn’t see anyone all day. My mum started making me buy my own stamps because it was costing her a fortune. It’s not like I had tons of news to write, I just had no other way to communicate with anyone. Those days were really long. It pains me so much to know there are thousands of people whose highlight of the day is getting the mail.Before they got sick, each of these people had a life with friends and work colleagues. I always used to wonder why my dad didn’t have any friends, but when I got sick I understood. They disappeared when he got sick, and all he had was our family.

To those of you struggling with an illness, you’re not lonely because it’s your own fault. Your calendar isn’t empty because you’re boring, it’s because we live in a world in which people get caught up in their own bubbles. Keep your chin up, at least we have the internet now. I won’t stay quiet about this, I’m writing this post to expose the uncomfortable truth to your friends and family.

To everyone else, please don’t ever use the seven words in the title of this post. If you’re not a good enough friend to that person to actually commit to visiting them, then stay quiet, it is better to do that. Trust me. If you have a family member or a friend who is sick who you do really care about then make the time to see them. You cannot be so busy that you don’t have an hour. If you really can’t visit, use your phone, write a letter. Just show them that you would actually prioritise them, even if it means cancelling a coffee with someone else you’ve seen recently, or not watching a TV show. They’ll be surprised you found an hour in a couple of months because you’ll be rare, maybe even unique.

I’m not bitter, I’m trying to make a change, so that one day those seven words won’t be uttered without being acted on. I know that this post will knock some people’s noses out of joint, maybe I’ll even lose some friends, but I really am just telling the truth.

Love Katie x

p.s. I’d love to hear your stories below.

Posted by chronickatie in Uncategorized Tags: bitterness, calendar, cancellations, coffee, communication, depression, diary, family, fibro, fibromyalgia, first priority, friends, good friends, hard truth, honesty, I'll let you know when I'm free, letter writing, letters, loneliness, lonely, M.E., my life, my story, negativity, personal experience, phone calls, priorities, priority list, share your story, story, summer, texts, truth, TV, visits, work colleagues, work friends, work mates