One thing that I’ve heard a lot since joining various ME related groups is that it shows you who your true friends are, although this might be true for quite a bit of the time, it seems a bit harsh really. As I only have the experience of being the person with ME I can’t say about it from the other side with this illness but I know from having people I know go through other illnesses that it’s hard to watch someone you care about go through it. It doesn’t help when the person is ill with something that no one really know what it going on as I think a lot of people with ME take a while to get a diagnosis and any chronic illness, being chronic, has to be a longer term thing for it to actually be diagnosed anyway. I know when I was first ill it was at least a year but I think I’ve heard it said six months now for it to be ME/CFS rather than a Post Viral Fatigue thing.
I try not to have many regrets, there’s not much point dwelling on the past and things we can’t change, but probably the one I do have is that I lost contact with a lot of people who I probably would still be friends with now. I know that some of them it was because I couldn’t make it to things and the constantly changing plans or excuses probably got a bit much and I can get that but it’s probably a bit from both sides.
I know when I was first ill I found it hard to stay in contact, I do still now fairly often, and part of that is probably just how I am but a lot was because it wasn’t just them that didn’t know what was happening. I didn’t know myself and that thought is scary and it makes you feel isolated when people are saying you’re lucky to have so much time off school or just have them not understand why you can do things some days but not others. Add in the lack of energy, especially over the first couple of years when I was pretty much stuck in a room with the curtains drawn a lot of the time, and it doesn’t really make you feel up to long conversations or replying if simply looking at a computer or phone wears you out.
It’s often hard for people who aren’t ill to really understand what it’s like to not be able to do much, if they’re ill and have a day or two off work it’s often a bit of a break even if they are feeling absolutely rubbish and it’s not long enough for it to become too boring. Despite not being able to do anything they’re generally too ill to feel up to doing anything anyway and you don’t have day after day or not being able to do anything and a week or month later they’re back going out or whatever they want. I do remember fairly early on when I was ill one of my friends was off school too and it was a day when I was well enough to be on msn messenger (does anyone remember using that?) and she said she didn’t know how I could be off school so long without being completely bored all of the time. I can’t remember what I replied but I know that I pretty much was bored all of the time when I was up to feeling it as, although you can stay at home and watch TV, there is no interaction with anyone outside of the family especially when it comes to school or work time (at that age school).
One thing that I think we sometimes forget is that we’re not the only ones affected by the ME. Of course we’re the ones who have the immediate effect of the pain or the brain fog but our friends and people who care about us have to watch us being ill and in pain and have no way of actually doing anything to help. That isn’t fun, going from experience with other illnesses and friends, seeing someone you care about going through something you don’t really understand or know what it feels like is hard. Sometimes it might be a bit of a coping mechanism to back off or just being worried about saying or doing the wrong thing and upsetting the person who’s ill of making them feel worse.
I guess the main way to get around this problem if you think you’re losing friends because of this would be to talk about it. Not just about the things like being in pain but how you feel with it, things like the Spoon Theory idea help with that as it does make it more real with the everyday struggle and people can sort of understand it a bit better, not just the fact you feel like you have the flu all the time but the decisions you have to make every day. I’ve also found that using songs can be a good way of doing it, there are songs for everything now and listening to a song that is written about something similar or describes how you feel can help get it across if you find it hard to actually say the words. The good old fashioned mix tape, not that anyone ever makes them any more.
Another thing to remember, especially if you’re ill at a younger age like school, is that people do just drift apart naturally anyway. There are points in people’s lives where you just go your separate ways and the seemingly closest friends never see each other again. Things like going to university or someone getting married or moving away for a job. There are points in everyone’s lives where you drift apart from the people you cared a lot about. It’s about how you move on from the lost friendships and how you treat other people going forward I think. You can dwell on these people who left for whatever reason or take any lessons you learnt about the way you parted, whether it was good or bad, and use them in your life. Try not to let it stop you making other friends and being open to others and learn how to not make the same mistakes, or if it’s not something you can actually control like ME then try to work out ways to work around these obstacles like having meet ups at your own house or, if you have the energy, somewhere you know well and can be comfortable in like a local coffee shop or a park where you can lay down if the weather is nice enough.
I think that a lot of us tend to find we have more online friends than the average person, whether it’s through ME related groups or just forums and groups to do with our hobbies. It’s a lot easier to keep up with a forum where you can pick and choose how many topics you read and reply to or when you do it. There’s no instant reply needed, these things can often be hours or even days on some message boards before other replies are posted. I know that a lot of the people I would consider the best friends I’ve had over the past twelve years have been from meeting online, actually pretty much all of the ones I still have any contact with were met online. As well as the fact we don’t have to reply instantly there’s more of a feeling, to me anyway, that we’re all connected over larger areas and it’s a bigger thing for anyone to meet each other and it’s less often or, as I’ve found in the past, if it’s a larger group then there is less of a problem if you were to have to cancel on the day.
I know there are at least two, probably three or four, people who I met online and talked to regularly, one in a completely different time zone who used to chat when I couldn’t sleep at night, who helped me so much when I was first ill. Sometimes it feels weird knowing that some of your best friends, or some of the people who have helped you the most, are people you will probably never meet, or will meet very rarely, but the fact that there was that connection means a lot when you’re stuck at home and can’t go out and have a normal social life for people your age.
I guess the main thing I’m trying to say in this post is for people who are ill, if you lose contact with someone and you actually think they were good friends until you were ill and you just sort of drifted apart then you can always message them and see how they’re doing or what they’re up to. They might have moved on and changed but if they were a true friend to start with they might be just as interested in what you’re up to as you are them. I know I’m guilty of being scared and putting off contacting someone who I really wished I had and then I couldn’t and I still wonder what if I had talked to them again, whether we would have become friends again. I am trying to take my own advice on this and messaging some of the people I was friends with, either online or face to face, and seeing how they’re doing. I’ll see how it goes, you never know until you try and now I think I’m in a better place to be a better friend myself as well with my health and understanding it.
Also if you do have a friend who’s ill with ME, please don’t give up on us. We don’t really know what’s going on half the time and know that if we do cancel or say we can’t do something then it’s not because we don’t want to. Often it’s too much and we either have to decide way in advance and not risk it, even if it turns out we would have been ok on the day, or we have to risk it and cancel near the event because it’s just too much for us to do. Don’t forget about us and if we don’t reply right away it doesn’t mean we’ve forgotten you, maybe we just don’t have the energy at the time and we’ll get back to you when we do.