‘When you said you had M.E. I just assumed that meant we’d spend a lot of time watching Netflix in our pyjamas,’ my partner said. ‘I was fine with that. But that’s not what it’s like at all. I had no idea how ill you would be, or how much it would affect what we could do.’
It was the first time I’d asked her what it was like dating someone with M.E. (also known as Chronic Fatigue Syndrome or CFS). I’d only been diagnosed a short while, and I was just starting to realise it didn’t only impact me, but the person I loved, too. Back then I didn’t know anything about how to manage my condition, and I hadn’t developed ways of communicating with partners about it. I was still far from accepting how much my life was going to change as I battled to find a lifestyle that allowed me to function in my own way.
Five years later, things are very different. A different city, a completely different job and way of working, and many new treatments and alternative therapies — and I have some quality of life despite the fact ME is an incurable illness. A lot of the time I can forget that I have what ME campaigner Jen Brea recently described as ‘an invisible leash’ around my neck, that snaps me back into suffering and exhaustion if I try to step outside my usual range of activity. Things really aren’t bad, not like they used to be. And because of this, I can be taken completely by surprise when someone new enters my life and greets the way I live with disbelief, resentment or shock.
A spoonie like me, a person with chronic fatigue (which can be caused by a wide range of health conditions), has to manage life very carefully in order to be able to function at all. Non-spoonies often don’t have the faintest idea about the mega-complexity of spoonie life when they first meet us — especially as we are often invisibly disabled (i.e. we ‘look fine’). This can lead to all kinds of misunderstandings, and the burden of having to constantly explain, educate and convince can further exhaust us.
Although I’ve clickbaitily addressed this to potential dates, I don’t just have these misunderstandings with romantic partners; I can end up having them with anyone who enters my life: friends, colleagues, neighbours, people delivering the post, train passengers who don’t get why I might need a seat more than they do… It’s just that it hurts most when someone I really fancy bails out, because they don’t get what I’m living with. But now I have this list to refer people to, I hope I might be able to use the spoons I save on those repetitive conversations for something more productive.
- I don’t look ill, but my health condition runs my life.
Life for me is like waking up every morning and, before I can even start my day, having to complete a fiendishly difficult puzzle for which I don’t know the rules — and sometimes half the pieces are missing.
Every morning I don’t know what my brain and body are going to present me with. I don’t know if I’m going to be able to get straight out of bed, jump in the shower, then get cracking on that to-do list, or if I’m not even going to be able to get into the bathroom ’til 4pm, when just brushing my teeth will use up all my energy and then I’ll have to crawl back under the covers.
Not only do I not know how much energy I’ll have each day, I also don’t know what kind of energy I’ll have. Some days I might have a brain that works pretty well, but a body that doesn’t, and I’ll be able to sit in bed and work in my pyjamas, even if I can’t leave the house. Other days, I might be able to do some housework and go for a walk, but my brain fog won’t let me concentrate long enough to send an email, talk on the phone or watch anything on TV.
To make matters even more complicated, I don’t know when my energy — whatever kind it is — will run out. So I might feel fine in the morning but end up back in bed in the afternoon.
In short, I live with daily unpredictability, and that causes me a lot of anxiety and means I have to do a LOT of planning, prioritising and risk-assessing. To make sure I can do the things I need to do to survive — eg working — I have to limit the non-essential things I do, like socialising. I can’t risk socialising during the week in case it uses up all my energy so I can’t work. If I want to go out on a weekend, I must make sure I can be flexible about work the following week, because it’s likely I’ll be extra ill afterwards.
That probably sounds like a lot to deal with every day — and it is — but I am pretty good at this now. I’ve had a lot of practice. You, however, will probably find it bewildering and overwhelming at first. You might be confused as to why I can do a particular activity on one day, but not on another. You might not understand how something that you’d expect would use a lot of energy doesn’t wear me out too much, but something that seems pretty simple to you, leaves me crashed for a week.
You’re just going to have to trust me on this. I know what I’m doing. Well, I know better than anyone else does. So when I tell you this is what I can manage and this is what I can’t, just take it at face value, and go with it.
2. There are lots of flaky people in the world, but I am not one of them.
I am the absolute opposite of flaky. You have no idea how hard a person with ME has to work, in order to have any kind of life. You have no idea how consistent and organised and diligent and patient I have had to be to get to the point where I function as well as I do.
You also have no idea how much I hate appearing flaky. I might have to cancel on someone due to unavoidable health stuff, so the last thing I want to do is ever cancel without good reason. I think carefully before I commit to doing anything. I do the absolute best I can to be honest and transparent and consistent with the people in my life. And if I have to cancel, believe me it’s the last thing I want.
3. Lack of contact or changes of plan really, really, really aren’t about you.
If I didn’t want to spend time with you, I wouldn’t blame my ME. If I was avoiding you because you had upset me in some way, I wouldn’t blame my ME. I’m constantly being accused of crying wolf about my illness; the whole world has told me for years that I’m either crazy or a liar, so I really don’t blame anything on my ME that isn’t my ME.
If I don’t want to spend time with you, I won’t agree to doing something with you in the first place. In fact, if I say I want to spend time with you then I really, REALLY do, because with ME you only get to do the SUPER DUPER IMPORTANT THINGS.
So if I cancel, or I’m hard to get hold of, or I seem off on the phone, and I tell you it’s my ME. IT’S MY ME. If you can’t accept that, you need to do some work on your issues around rejection.
4. It’s totally fine to have lots of feelings about my health condition — I do.
I hate having ME. I hate how it has blighted my entire adult life. I hate that I can’t do 80 per cent of the things I want to do. I hate that I will never get to do most of those things. I hate that I have had to give up on most of my dreams. I hate that I can’t predict what my illness will do to me. I hate that it makes me let people down. I get angry about this. I get sad about this. I get scared about this.
And I expect you to have all those feelings too sometimes. Why wouldn’t you? That’s totally understandable. You might also find it hard when I’m struggling; you might find it hard that you can’t fix it; you might be one of those people who is used to fixing things for people, and you might get angry and confused when you can’t do that now.
What’s not fine, however, is dumping your feelings about my health on me, when I’m not only dealing with my own feelings about it, but also with being chronically ill itself. There are two ways of dumping: one is obviously being angry or rejecting of me. The other is shutting down because you feel angry, but you also think it’s not OK to be angry with an ill person. You think that might make you a bad person, and you don’t want to be that. So you just withdraw. That’s worse than anything.
Here is a really useful concept: Ring Theory, or, ‘Comfort In, Dump Out’.
I’m not saying you can’t ever tell me you feel angry or sad about my health, or that it’s difficult for you. I’m just saying there are times when I will be able to handle that, and times when I won’t. Also, the way you tell me is important. Saying, ‘I’m finding this really difficult at the moment and am going to have to go and chill out for a while, but I still totally love you and if you need me I’m here’ is good.
5. If in doubt — stroke.
One of the weird things I get with my illness is massive nervous system overstimulation, often known as ‘tired but wired’. When I’m in a crash, I spend most of my time in this state. I’m too exhausted to do anything at all — read a book, watch TV, talk on the phone — but my brain and body are too jumpy to sleep. It’s a very specific kind of torture. But one simple thing that helps with this is being stroked. If you stroke me, I often can manage to watch something for a while, and it will certainly allow me to feel a bit more comfortable. I get overstimulated a lot in public environments too, where it’s noisy and there are a lot of people, and it tends to make me feel pretty ill. So if you’re OK with PDAs (I am!) then stroke away.
6. Don’t make assumptions re how ill people have sex (and just think of me as a sexy sloth)
People tend to assume that ill = not interested in sex. I’ve spoken to lots of my spoonie friends about this, and the truth is much more varied than that. For me personally, and bearing in mind how much of my life I spend in bed, I’m actually in a prime position (literally) for loads and loads of lovely sex. And OK, it depends how ill I am on any given day, but generally speaking, totally go for it. Sex me up. I find the feelgood brain chemicals generated by sex and closeness seem to really help with some of my symptoms, and they certainly help me feel valued and human, things I can struggle to feel when I’m in a crash.
However, I’m lucky because my usual level of pain is relatively low. Friends with more pain than me find it interferes much more in their sex lives. So basically — communicate (which goes for all sex with all people anyway).
7. It might be a wonderful opportunity to learn the art of self-care
When I’m in a crash, I sometimes find that my partners end up worrying so much about me and whether I’m OK, that they forget to look after themselves. They become resentful and down, I feel guilty and worried, and the joy goes out of our partnership. The relationships that have lasted have been the ones where my partners have learned that taking care of themselves is a crucial part of being a good partner to a spoonie. You need to take care of your own health, comfort and happiness if you’re going to be able to support anyone else. The last thing I want is for a partner to sacrifice their quality of life for me. So get good at eating and sleeping properly, building up a support network for when you need to vent, taking time for yourself when you need it, doing things that make you happy and relaxed and connected even if I can’t always join in. You deserve it. The thing is that self-care is an absolutely vital life skill for anybody, and too few people are taught it. A spoonie has to get really good at self-care, and you can learn from us.
8. Another way of looking at it: dating a spoonie involves losing some of your abled privilege
Early on in my relationship with my current primary partner, we had an argument over a festival we both wanted to attend. I knew that the only way I’d be able to manage it and not crash would be if we avoided camping and stayed in a hotel nearby. It would be a bit of a pain as it would involve leaving the site every evening, but it would make possible something that would otherwise be out of my reach. My partner got grumpy at the thought of not being able to camp like everybody else, until I pointed out that his expectation that he would be able to participate that way — and his outrage at the idea of being denied this — was due to his abled privilege. This fairly minor adjustment meant the difference between me being able to attend the festival or having to miss out altogether, and those daily adjustments — that extra work and expense — are just an accepted part of life for a chronically ill or disabled person. As soon as he saw that, he was totally happy to get a hotel (one of the reasons I love him).
Other partners have struggled with the necessity for me of changing details of plans when my health has dipped unexpectedly — for example not being able to share a bed after they’ve travelled reasonably far to visit me. Or they’ve not been able to accept that the pace of their relationship with me is going to be very slow — that there will be long gaps between dates, that I won’t be able to predict how much I’ll be able to manage when we do meet. They’ve felt this is not something they should have to deal with — and of course, it is an able-bodied privilege to be able to predict energy levels, and to be able to develop relationships at a fast pace if desired. But bear in mind that I’m a writer by training and profession, and yet it takes me on average three months to write a single blog post; that I’ve been trying to finish a novel for six years and am currently less than a third of the way through it. That’s how slow spoonie life can be. All of it.
9. If my health condition is too much for you, so be it. But I’d rather you didn’t make me the problem in that scenario.
My body and brain work differently to most people’s, and so I have to live very differently from most people. I have had to accept that, and I live and work with that every day. If you can’t or don’t want to work with it, you have the privilege, as an abled person, of being able to step away. But please don’t try to make out that this is my fault, that I have done something wrong, by being the way I am.
10. The truth is, it’s probably a bit pointless to read a list like this for help with dating a spoonie, because we’re all different.
Sorry! I know it was unfair of me to take you this far before mentioning that (life’s unfair, huh?). Because chronic fatigue is caused by so many different illnesses/disabilities, and because each of those conditions has other associated symptoms, what works for one spoonie won’t work for another. But I hope that by writing this, you might get a general sense of what we’re all up against — that spoonies’ bodies and/or brains are just different from yours, and that will mean having to adjust the way you live — whether in big or small ways — if you want to be part of our lives.
As an example, here is a sloth that I met at a zoo once:
If you had that adorable, magical sloth as a pet (and who wouldn’t want that?!)*, would you complain because it was useless on the ground, sometimes mistook its own arm for a branch and fell out of the tree, only had a poo once a week, and moved much more slowly than you? OF COURSE YOU WOULDN’T. You’d work round it. Because it’s a sloth, and you love it.
If you want to know how to work with your particular spoonie’s limitations — the best thing you can do is ask them what they need.
Bonus advice: We’re totally worth it
It isn’t always easy dating a spoonie, but last time I checked that went for, er, dating absolutely any person under the sun. And in my experience (not just talking about myself as I have SO many spoonie friends) spoonies are bloody amazing people, because they have to be in order to deal with so much every day. They tend to know how to grab hold of the good moments in life and really live them; they tend to have an excellent (if dark) sense of humour; they’re fighters and survivors; and they have a massive capacity for compassion and empathy.
Also: some of us are sexy sloths.
*Note that keeping a sloth as a pet is inhumane and mainly illegal. Also they get covered in fungus and stuff so probably wouldn’t be as great for snuggles as they look. I have researched this heavily.