You Broke Our Friendship and Don’t Seem to Care - Disingenuous Friendship is No Friendship Indeed.

the effect of having a chronic illness and autism on friendships, what the friendships mean that make it through, how it hurts to lose others

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Dear Red Cabbage Heads,

Prepare for a ramble, not particularly well crafted, made across many sessions, over many months. Says nothing much of import really but it was finished today after reading a couple of other posts that tied in. They are much better pieces than mine, but you will need to read this in order to find them - now don’t you dare just scroll to find them, that’s cheating!

Photo by Niklas Hamann on Unsplash

I’ve been in a bad slump for many, many months now, it’s becoming my new normal. This time two years ago I had masses more energy (though still not nearly as much as a ‘normal’ person) and was almost quietly hopeful for a mini partial recovery, at least for a while. My baseline was creeping up and had gone beyond 2 hours. Looks like that ‘while’ has been and gone. It’s been nearly 18 months now since having a passable amount of energy, and the world is passing me by again, my baseline is down to less than an hour and I am finding I am having to dig deep into ‘reserves’ (what reserves?) to even get the simplest things done. Each time dreading what that means for my quality of life in the short term and the eventual length of my life. I’m convinced that in doing this ‘deep digging’ I am shortening it.

During Lockdown I tried keeping in contact with family and friends as I felt sad that they were almost having to live my life. I sent out personally handmade crocheted hearts and a handwritten note to everyone I knew. (One odd person refused to confirm their address for me, I’d forgotten the house number, and accused me of being a scammer even though I could prove I wasn’t, and doubled down on refusing to give their house number, being rather snarky and catty with it. I deleted them almost immediately. Sometimes I am nothing it not efficient.) I sent a family weekly email full of simple, small positives. I wanted to help them get through it, to provide an anchor in the chaos, maybe to even impart some wise words, if asked, from someone who lived lockdown every day irrespective of a virus. Gosh, that took a lot of effort. I had to give it up. So much energy used for so little in return. Some weeks I wasn’t even sure they received the email. Out of my sister, two brothers, and my father, just my sister was reasonably consistent in replying, even if briefly. It was sobering. To realise how much you have slipped from people’s consciousness. To know you aren’t considered or thought about really. That the ill one can be left out.

It’s so easy to feel slighted when you are already feeling low due to your illness. When you already feel a burden. When your husband finally loses patience in a day, and you know you have failed him again. I so wanted to connect again with everyone. But the effort required was too much. I did suggest someone else take up the mantle, or to take it in turns, it didn’t happen. For a while I only sent emails sporadically when I could, rather than on a schedule, to my sister in the main as I thought she would eventually write back. Whether she felt obligated or not I did not know, nor want to consider. As I’ve gotten worse my emails to her have lessened and then stopped. She has not taken up the mantle, so I suppose it was obligation. I tried again recently to reunite us, to organise a family get together, I asked for preferences, dates, places, style of accommodation, numbers of guests, only one brother replied, 2 weeks later, with ‘I’m happy with what everyone else wants’, what everyone else wanted was never divulged, and so the plan dissolved into nothing. I doubt I will try again.

They did not and do not contact me unless I contact them first. I feel abandoned. My brother used to live just an hour and a quarter away. He was one of the reasons we moved to Wales, to be much closer to him, his partner and kids. Over the 5 years we were there, we saw them less than when we lived many hours more away. One time I asked if we could visit as we hadn’t seen them for many months, I was effectively told maybe in 8 to 9 months time. We travelled further every week before lockdown to see MIL for a couple of hours. I was offended. He was one of the reasons we decided there was nothing to hold us in Wales.

See, I don’t get this, I don’t work this way. If they asked to visit we would rearrange our commitments to fit them in. We would say, please whenever you can, we would love to see you. Not, say in January we will be busy until after the summer and then we shall see and then see them entertaining other people spontaneously etc. Makes you feel even more of a burden. Is it my illness that puts them off? Am I such hard work? Or do they just not like me? You are forced to consider these things when battling this disease. So many ‘friends’ have fallen by the wayside, why not family too? I will be writing a family newsletter at Xmas this year instead. I know already I will not get any replies.

Photo by Jeremy Perkins on Unsplash

Over the years it has become very apparent that I not eminently easily likeable. I’m difficult, different, and awkward. I bring a lot of this upon myself because I now hold back a lot, a real LOT! Having spent many years investing in friendships and having had those friendships end for reasons I can’t understand and still obsess over. A lot of it is because of my autism and that makes me odd, and most people don’t want odd friends. I am very aware that MY two closest friends have proper best friends that are not me. Friends that they have known for many, many years. And that makes me not want to impinge on their time. I hold back massively.

I struggle now when it comes to making new friends. I don’t trust easily. I hold back, and I don’t compromise. One new acquaintance turned out to be transphobic, I have a trans child, they have trans child/adult they refuse to acknowledge, so that relationship will never move forward now. I also don’t know when I move from acquaintance to friend, though I can tell very quickly when it moves the other way.

Kathryn Anna Marshall

posted a very timely essay this week about making sure you keep in contact with people when they’ve gone quiet or are absent because they may be having a hard time. And I completely agree with her.

Autistic Ang

posted here about NOT needing to keep in touch etc. And I completely agree with her too.

But . . . there’s always a but. So for Katherine’s point, I don’t always realise someone has gone quiet, it takes me a while, and I don’t understand the social rules around this (thanks autism). Sometimes people say they are taking a break and I don’t know them enough to know whether that’s because they are fine and just want a break, or they actually need support. So I tend to wait it out, if it lasts too long I may search the socials etc to see if they’ve been active elsewhere. Eventually I may reach out but . . . when is it too soon to reach out? Too late? Can it be too late? What ‘level’ of friend do you need to be? If they don’t respond should you be worried or should you leave them be? What about my RSD (rejection sensitive dysphoria) when they don’t respond? It’s such a minefield. I know people never seem to reach out to me when I’m quiet or different or morose so I don’t have examples to follow as to what the right thing to do is.

And for Ang’s point, I also agree that you shouldn’t feel obliged to communicate, that life gets in the way, that the pressure can be too much for some and they literally can’t do it. However, I can’t cope with being ‘ignored’, as my RSD brain sees it, for months and months on end. In my brain if you can read the text or message you can click the thumbs up button, it only take a millisecond. I need friendship to be a 2 way street not a cul de sac. I need to feel recognised not just when I alone reach out, I need reaching out to as well. And I do realise that’s my failure, that my issue, and so that’s often why with some we can’t be friends, because the energy required by others from me to be the place holder, the initiator, the one holding all the mental log is too much. I can’t manage it. I don’t have the energy. I don’t want transactional relationships, but I also want to be seen. Silence for a year or more isn’t being seen. It is all very probably trauma based around childhood and also adults friendships that went tits up, but I’m old now and I’d rather be lonely than feel used. I don’t want half a friendship.

To this end I like snail mail best. I spend time writing a physical letter, it takes ages to get there and my friend needs to read it and digest the information in it before they too begin to write a response which may take a few days or longer, and then it needs to go to the post office and wend its way to me. The pressure of immediacy is no longer there. It is a beautifully slow and intentional process.

Photo by Kelly Sikkema on Unsplash

In many ways the old ways were best. There wasn’t the pressure of instantness, or immediacy. One land line phone in the house and everyone could hear your conversation. No mobiles so no texting or messages. If someone dropped out of your friendship circle that was allowed, no looking them up years later. No collecting of ‘friends’ to show how popular you were. (How, just how, do you have 500 friends on FB and actually be a friend to them all? If people don’t interact with me I delete them, if I don’t interact with people, I delete them - I’m not a stalker and I don’t want to be stalked.) Years ago if you lost contact, it stayed that way, and maybe that’s a healthier way of being. Years of anguish and self doubt would be saved.

In the way of an autist I will now tell you yet another tale.

Years ago, before I contracted EBV again and therefore before I became chronically ill, I met a wonderful woman in the school playground and we became great friends, I even ended up working in the same school as her, in the same classroom, and we still enjoyed each others company outside of work. Even our husbands got on. We both lived within the institution of the military as well, so understood that life. My family moved away after 3 years and we kept in contact via email - we moved 8000 miles away to the Falkland Islands and so phone calls were not brilliant, incredibly expensive, and there was a significant delay, and almost zero mobile signal, we just about had internet, though it was so slow, barely dial up speeds, that I called in anorexic band in jest. We played weekly email ping pong to stay in touch. When we got back home to Old Blighty we met up and only then did she tell me about the major problems she was having with her husband and had been having almost the whole time we were away (she’d lied in those emails). When she joined Facebook eventually, years late to the platform, she didn’t send me a friends request, but when I finally noticed she was on (via a mutual acquaintance) she said ‘of course she’d accept a request from me.’ but she didn’t send one. Eventually we only spoke if I initiated the conversation. I tried an experiment of not contacting her on her birthday one year nor at Xmas (but still sent a card) - crickets ensued. I messaged and again that was ‘good’, she was so pleased to hear from me etc and we chatted for a bit. And more crickets for another year. Finally this year, after 20 years of friendship, 15 years of which I’ve struggled to stay a friend (suspiciously the same amount of years I’ve been chronically ill) I unfriended her. I think she moved a couple of years ago but was never given the new address so that’s that.

Photo by Firmbee.com on Unsplash

I don’t understand how you can be so pleased to be contacted by someone, swear undying love and friendship, tell that person how incredibly important they are to you, that you will always be there for them no matter what etc, and yet never be the person to initiate contact. (In a romantic relationship it would be considered love bombing and a red flag.) I don’t understand how that is friendship. How do you keep secrets, and lie about it, from someone who you say is your 2nd best friend. (Yes, yet again, I wasn’t their best friend even if they were mine at the time.) How can you let the years pass like that, never reaching out, never being there, and yet still expect us to be good friends at the end of it? And what is the point? I kept this friendship way longer than I would have kept a man treating me that way. I don’t miss her anymore, there was nothing left to miss, I don’t miss the annoyance I felt when thinking about her, I held onto the idea of that friendship for far too many years, and now I am free.

I regularly test my understanding of social interactions by running them by my husband. Because I really don’t understand. It took me this long to bite the bullet because I did not understand what I should do, whether this was an okay way to be treated, and I ran the situation by my husband many times. When I told him I had ditched the friendship I don’t think he was at all surprised.

I am immensely grateful for the friends that have stayed, especially those that knew me before I got really ill, those who have stayed the course, who have understood about me changing plans. I’ve been wanting to visit my friend in Belgium since she moved there, but until very recently I couldn’t imagine how I would manage the journey and sightseeing etc. Then I began the journey of getting an electric wheelchair and it became a real possibility. But now the parts for the wheelchair to make it electric will take 3 months to get. I should be mobile by February, she returns to England early March, update now April. So visiting Belgium probably won’t happen now, and I know she will understand. I’ll see her after she moves instead.

Anyway, this is far too long a discourse now. If you made it this far - this gold star is for you.

Photo by Joe Ciciarelli on Unsplash

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