This is a bit of a bug bear of mine. Although I have many friends in my life, I found that being sick with CFS/ME was extremely isolating and even my best mates really didn’t know how to support me through it. It is a really tough one and I’m still struggling with the realisation that friends are simply not family, and that I shouldn’t expect them to be.
I’m an only child and fairly outgoing. I learned pretty early in life that I get a good kick out of having lots of friends and lots of fun around me. I even started to feel like my friends were my family. Although I think this is a beautiful place to be, I also think it is a little ‘rose coloured’. Really when the going gets tough, these days, most people would love to be there for us, but the reality is they can’t.
I’ve even heard many stories via you guys and the many stories of others with CFS/ME, that some of you have actually lost your partners as they simply couldn’t deal with the burden of being with someone with CFS/ME. Understandably it is a pretty tough endeavor and not for the faint-hearted. But it is also oh so painful, when those that can chose to leave CFS/ME behind do.
So what good could possibly come of this isolated situation?
Well I am now, I believe, at the tail end of CFS/ME and I’m reconnecting with loads of old friends. It is so wonderful and brings me great joy. But I do often wonder, well where do I really stand now.
I am so grateful to my mum, she has been such a darling throughout this chapter of my life and we are really lucky because this has brought us closer together. I’m still struggling with the loss of a dear friend who has been a casualty of this saga, but, I have also become much closer to myself.
Many spiritual writings suggest that one of the greatest achievements of life is to ‘know thy self’. And really this is probably one of the biggest challenges of life. Challenging our beliefs and delving deeper for better understand is not the easiest thing to do, but I believe it offers some of the most satisfying experiences we have to absorb in this life.
So, how about a few years to draw yourself away from society and get to know yourself? Sound enticing? Yeah didn’t think so. LOL! No sane person would generally put themselves into this situation, unless they were on a pretty heavy spiritual journey. But that is our mark and the outcome, if you chose to accept, can be deeper understanding of yourself.
For me I have come to understand that my expectations were not really very realistic and that I had also tied in my own self worth into these unrealistic expectations which is a big recipe for disaster. I feel I now see more with eyes wide open. This is much better for everyone involved. No one wants to feel like they let me down, I think most people would feel that they wish they could do more. Most of us feel that about people in need.
I go forward knowing that there is now a part of me that is looking for deeper relationships. Not quantity, but quality. I have lots of quality friends but not necessarily quality relationships, so for future reference that is where I’ll be putting more of my time.
How have your friendships changed? How do/did you deal with the isolation?
Tags: Friends my story perspective Support
I have had Chronic Fatigue for 3 years.It has got worse in the last year.I have been in hospital a number of times.The feeling of no hope is the worst thing ever.I have prayed for God to take me away from this stress.Losing my temper a couple of times.And using my fatigue as a reason to try and find people who have done me wrong .I have come through this episode of fatigue and stress.Now I want to change my food intake to clean natural and a positive way of eating,and being.I am now ready to be a more positive me and a better me inside and out!
I read this post a while ago and remembered it today, when I was feeling pretty upset and sad after losing a long friendship. It was someone I expected to have some understanding and sympathy and it did send me into some self-reflection.
Your words about a deeper understanding of ourselves and some of our relationships has helped me today, thanks Mel.
I am so lucky, and have been surprised and humbled, that so many of my friends, family and even acquaintances have been so caring and kind. They are treasures and I’m going to try and think of them all today instead of this awful sadness.
Thanks Sash, glad my words have helped you and sounds like you are also very lucky with your circle of family and friends – great to hear. Sorry for your recent loss though, still something to feel some sadness about. On a positive note, when you get better people start to come back into your life. Hard to hold a grudge when you just want to get on and enjoy life again so well it all seems to slide under the carpet….you don’t forget but I guess you do forgive. x
Friendships is an interesting one, it’s something I’ve learned quite a bit about during my journey. When I was younger, 16-19, I lived for having as many friendships as I could. I prided myself on being the most loyal, giving friend imaginable. I was so unselfish, so loyal, and now in hindsight I realise I was too loyal. I put myself second and my friends first. I remember being 18, and hearing an elderly gentleman tell me “over your life you’ll have many people you hang out with, drink with, talk to, but at the end of your life you will only have about 2 or 3 people who you can actually call friends”. I was really disturbed hearing that, as it implied a cold nature to human beings, after all I wanted 100s of deep and meaningful friendships! Well as I sit here, at 27 years old and just coming out of the CFS tunnel, I realise just how right he was. For years, literally years I didn’t socialise with anyone, all of my so called friends from school were long gone, all busy with their own lives, and the only people who were there for me were family and my GP.
I found myself questioning just what a real friend was, and thought of someone who I went to school with, he was extremely popular and a good mate of mine at the time. He was probably the most gifted athlete I can ever recall, unbelievably talented, he should have probably been a 3 time Olympian by now. But his “friends” at the time got on the drink with him as often as possible, and they had good times, great times in fact, but now he is the one who wasted what could have been. My question is, if these people were true friends, wouldn’t they be encouraging him to reach his full potential, utilise his abilities to their full extent and achieve what very few people could? Instead they wanted to get on the piss with him, have a good time, possibly to bring him down to their level, because they knew they didn’t have the talent he did. My point is, I have found out of all the friendships I saw over the years in school, the genuine “care” of each other was quite small, if someone had some bad news, his or her friends would be more interested in being the first to break the news, rather than coming to their friend’s aid. Even the occasions where they did care about something tragic happening to someone, before long, like literally a couple of days, they were back focussing on their own lives, gossiping as usual.
True friendships, are extremely hard to find . As it stands now, I have the pleasure of knowing two people who I believe I can count on if something really hit the fan and I needed someone, I value these people more than just about anything else, and in return they have an IOU card from me that never runs out lol. I talk to a lot of other people when I go to the gym, and we get along really well, but I don’t refer to them as friends.
You must be very protective of your feelings, and only give your love and friendship to people who truly deserve it.
Thanks heaps for your story and insights Ryan, your a great writer! Awesome to have you on board!
Mel, what an absolutely brilliant article. You have beautifully and meaningfully written about what is one of the hardest parts of CFS. It has certainly been my biggest struggle and after reading your words I felt relief. I do have the time that others don’t to learn about myself and what I really want and only put the time into those people who love and accept me right now. Funny thing is I’ve cried so many buckets for the people who have not been there. Thank you, you have really given me a different perspective on something that I’ve had such pain over. See there is a reason you’re still writing your blog! You just changed one chicks perspective on her world. xx
Oww Loretta, thanks so much. That is so lovely to hear that you relate to my experience, and that my words help. It is definitely one of the toughest lessons of CFS – of which there are many! I can relate to you re the crying buckets. Somewhere in the determination that the syndrome should be titled ‘fatigue’ I think they forgot to mention the ‘sadness’ part. Dealing with loss (of all different aspects of the prior life) is a major part of the experience. Thanks heaps for sharing! xx