This is potentially controversial. It is hard to write because I don’t want to offend anyone but at the same time I want to say it. This post by no means applies to everyone. And it doesn’t in any way mean I’m not grateful for the wonderful support I receive from many of my friends, old and new. Most of this was written a long time ago in 2013, and some was written even before I started this blog.
I can remember so clearly the rally of support on the day I was diagnosed (November 2010.) The texts and phone calls. Some of that support has died down now. I suppose there’s only so many times a person can say “Get Well Soon” and “How are you?” before they begin to avoid asking because the answer can’t be a positive one. I guess it’s tricky because it’s ongoing. Maybe by now people realise I won’t be better tomorrow or next week or even next month. And so they don’t bother because they know things aren’t okay.
But am I not worth a text message? Is my suffering less because it is my norm? Because it is constant?
Last summer, when I told a group of friends I’d ended up sleeping back in the dining room, only one friend commented on that fact. It was skirted over or even ignored.
With that move down the dining room I’ll admit I expected more of a response from my closest friends. Or any response at all really. I have expressed numerous times over the last four years that I measure things as good or bad depending on whether I’ve managed to stay in my bedroom and use the stairs. That’s the cutoff point; the dining room. That’s what we say if we ever discuss how things are “At least I’m/you’re not in the dining room.” And yet many didn’t even comment on the fact that I was so poorly I could not use the stairs again. I don’t tell you every detail of each day but I told you this one. Where were you? Perhaps the one time I was truly honest with you about my fears and you weren’t there.
Yes I’m getting a bit bitter and twisted aren’t I?
It has hit me that I look at my supposed support network through rose tinted glasses. I realise too, that my situation with regards to friendships, is far favourable to that of some of my fellow sufferers. So this post is also written on their behalf.
I don’t hear from many of my friends anymore. Not regularly anyway. They are busy. But I also think that they believe I am okay because of my smiley nature. “Anna posted on Facebook the other day so she’s okay…” They might read this blog and feel like they don’t need to check in because I have posted about my day or how I’m doing. The friend who used to text nearly every day no longer does. The friend who used to visit regularly no longer does.
I don’t know what I would be like if the tables were turned but I’d like to think they would hear more from me than I do from them. If a friend of mine had the flu and I knew about it, I’d like to think I’d at least send a message.
I understand that relationships are a two-way street and that I must play my part too. But most of the time I am honestly too poorly to hold up my end of the bargain. Texting is becoming increasingly difficult because of the motor skills and concentration required. My memory is also not too wonderful and I am sure I must have forgotten birthdays and holidays and interviews that my friends tell me about. It must be hard to be on the receiving end of that but I think I have a pretty good ‘excuse’ sometimes.
With some friends we have never had the type of relationship where we would text a lot, but it would be nice for that to have changed now that I live a much more isolated life. I am ill. All the time, I am ill. People send well wishes when people are ill don’t they? In The Beginning there were cards and messages and presents. There are still those who send me some post every now and then and it absolutely makes my day. But in all honesty most of my support comes from my fellow sufferers and new online friends. I have come to the conclusion that chronic illness is miles away from regular, temporary illness. The rules are different.
Do people expect that, four years in, I am used to it all by now; to chronic illness?
I know that illness can’t take the blame for every relationship breakdown. People change. People move on. C’est la vie. I know that everyone has things going on in their lives: bereavements, illness, work, new boyfriends, family… I try to be there for my friends as best I can but my health restricts me in ways that I could never have imagined. I’m sorry for not being able to be the friend I wish to be.
It may be that people can’t win with me. I’m rarely brutally honest about how things are when people ask me. I know too that the world doesn’t evolve around me. I’m not saying it should. I’m not sure what I am saying really. Maybe I’m just making another observation about life with chronic illness…
I need my friends. I need you. I need your help to keep me going. I need you to burst this bubble of isolation. I’m unlikely to be able to have visitors or go out often, but I can read text messages or emails or facebook posts. You know by now that there’s little point asking how I am because I’m obviously chronically ill. I know that Get Well Soon cards can’t really apply when you have a condition like M.E. but it’s the thought that counts.
Sometimes I wonder how long it’d be before certain people realised I’d dropped off the radar.
I’m not expecting to hear from everyone everyday or even every week. I’m not an idiot, I know that people have lives to lead. But they seem to forget that they are my life. Hearing from them has become my lifeline. Almost five years in and it doesn’t get any easier to cope with. You get used to it but it isn’t easier. It isn’t less awful. Infact the feelings of isolation get worse as the months and years roll on; while you’re all out there getting on with your own lives.
Next time you’re off work sick, think about what you do that day. And then imagine what it must be like to have everyday like that for years on end. You’d want to hear from people wouldn’t you? You’d want a text message or a letter to help make you feel like there is more to life than the four walls of the room you sit in every single day wouldn’t you?
You might see a photo of me smiling and think “Yeah Anna’s okay” and I am but it doesn’t mean I’m not lonely. Or fed up. Or fighting every single day with my own body for it to cooperate and function as it should. I get that you might feel awkward or not know what to say. You don’t have to ask me how I am. Tell me a joke. Tell me about your day. Talk about TV programmes. I know you’re all busy but I’m busy in my own way too, fighting against my health.
So I wonder…
I have such little energy. Why should I spend it on people who have vast amounts of energy and yet don’t spend any of it on me? There’s something not right there is there?
But to myself I say this. Just because someone doesn’t tell you, doesn’t mean they aren’t thinking of you young lady.
M.E. myself and I 