Spouse wants to invite a friend to visit when I’m very sick

My spouse wants to have a friend visit at our house for a couple days. We live in a ranch home where the living space is on one floor and the size of a three bedroom apartment. The master bedroom where I spend my life is adjacent to the main living area (living, dining, kitchen).

I am currently mostly bedridden and cannot be upright for more than a couple hours a day. I do not self care more than once a week. I truly look and feel like total garbage every second of the day.

I can push my body to get up and do more but that results in significant ME symptom exacerbation that lasts for days or weeks afterward, especially symptoms during the night destroying any chance of sleep and compounding to make everything far worse to where I can go into full crash (cannot take people in bedroom, cannot use phone, cannot talk, cannot take any simulation). So a lot of staying in bed as much as I can is to avoid the hellscape the PEM brings. With this extreme level of pacing I have days where I can look totally normal to an ME-naive person.

I said to my spouse that this would be very hard for me physically and psychologically and please not invite someone to stay at our home right now. But I’m feeling like I have to make this case which should be obvious because my spouse has been with me all 10 years of ME and seen it firsthand slowly getting worse and worse.

Is it wrong for me to not want random other people to see me like this? Or to not want to feel forced to stay in the bedroom with the door closed the entire time the visitor is here? Or even worse exert to self care and look as “normal” as I can to interact for a couple hours a day knowing full well this is going to make my life worse for days or weeks afterward?

My spouse’s friend doesn’t have to stay at our house and could still visit. I welcome any comments please even if you think I’m being difficult or complicated tell me. I have no idea what’s normal anymore. But since I’ve become more bedbound and less able to self-care I don’t want random people (other than my spouse and family) to see me like this.

To a healthy person I would say when you are really sick with an illness like flu or something you generally don’t want people to see you in that state and hibernate at home, well with ME you are in that state every second of the day forever. It’s not social anxiety, it’s that you literally look and feel like shit on top of the fact that the higher level of exertion to interact with people that aren’t immediate family increases the chance I will crash.

 

I can only offer

You are being completely reasonable. I'm not as severe as you are but I've advised my sister who lives abroad and visits every year to stay an Airbnb from now on. She understands that I'm disabled and can't stand or walk for too long, but she expects me to prepare food and serve her coffee in the morning b/c I look well. No more. She doesn't understand the lengths I went through to welcome her visit, like doing nothing for 10 days prior.

 

This is the point.
For some reason people seem to think that all the things that are reasonable & expected when someone has a temporary illness, suddenly disappear when the illness is continuous. Its weird but i find everyone does it. I have friends where if i rang them in distress looking for support while they were in bed with the flu they'd be outraged... but they think its fine to do it to me when i have what is, in effect, the flu, permanently.

In terms of saying no to the friend coming to stay being reasonable id say it depends if your spouse needs to have them to stay... or if they only want them to come.

To my mind in relationships 'needs' trump 'wants' every time...
ie you need not to have your suffering exacerbated. Thats a need... to not have your health made worse or to suffer even worse than you are doing right now as a cosequence of your spouse getting what they want.

If there are conflicting needs then its a decision based on severity or length of time of suffering that would provoked by each person's need not being met. There is also a consideration of whether either persons needs can be met in another way.

(incidentally i find people understand better when i use the word suffering rather than 'symptoms' or 'illness' or even 'pain'. 'Suffering' captures the global picture better i find.)

 

I don’t think you’re being unreasonable. But it’s hard for others who don’t have the condition to understand. I would convey my feelings on the matter, but I wouldn’t engage in conflict if it’s likely to occur.

Best case scenario - your spouse understands and your visitor has a comfortable stay elsewhere.

Compromise scenario - it sounds better to stay in your room to conserve your health and if possible pop out to say hi, just as if you have the flu.

 

My spouse’s friend doesn’t have to stay at our house. The reason is since we last saw her years ago we moved to a new house and metro area and I think my partner wants to show her our new house. Also culturally, my partner and her are from the same country where seems more common if there’s a spare bedroom why stay at a motel or hotel. But there are plenty of cheap hotels nearby.

I could just stay in the bedroom as much as possible, but as a previously super social person before ME I find it makes me feel odd? I don’t know why, maybe because I’m in my mid 40s and not yet an elderly person in a home nursing care bed hidden in a room of the house.

I think one reason I wrote this post asking for feedback is because my spouse just put this on me with almost the expectation that I should say yes and anything else would be a disappointment. So going into the discussion I don’t think I had much say really, and in a way that upsets me, because when things like this happen to pwME or other invisible disabilities we then fall into thinking am I not believed? Are they not seeing how serious my situation is now?

I told my spouse too if she comes to visit and I really don’t want to be locked away in my room then a couple days of interaction and the stimulation of another person being in the house will result in major PEM and probably a crash for a week or so after.

Would you accept a crash so that someone can stay at your house when they don’t need to?

 

The problem is that even if you were to say yes (which doesn't sound like a good idea) you immediately come up against another 'front' where there is either noise, or you need something adjusted and they feel awkward with you or you feel awkward with them or you have a 'you should have said' (but you couldn't). ME is so sensitive I can't imagine this not happening.

And I have to think about this because I'm susceptible to the 'not wanting to ruin for someone' but then you have to realise it is just more of a nightmare once you've OK'd a point-of-no-return situation.

And then the 'recovery' (because you don't have a guarantee of getting back there even after a very long time) takes so long. And would need so much added consideration and carefulness, and if you are like me when in PEM then sleep being all over the place when someone is 'used to' what is a better for them routine. People do get shocked when you say many weeks or months but in their mind that stops at a few days.

It is a horrid illness where you can't win. If you are up in pain overnight then you are waking them and that's embarrassing for all too. And so on.

And your spouse perhaps needs to think about the guest and the position they would be put in. They may be incredibly lovely and realise how precarious your situation is, and then how awkward will they feel. Or not and then it's perhaps not great for you or your spouse. EDIT: if they don't stay: It's a chance for your spouse to see if they are interested in knowing enough detail/specific that they can not hurt you or if, sadly as is quite common, that becomes something that doesn't 'get through' for some reason.

From what you've said about them being able to visit without staying this seems like the better option, so they can find out what they are letting themselves in for gently as can you. Your spouse might realise that was hard enough even with everyone's best will in the world (it is the illness that won't compromise not you) to be able to enjoy and navigate without too much impact. At a point where there are options. Dip the toe?

But I don't know how much problem the not staying involves re: journeys or if they have to stay somewhere else so there might be varying levels of maybe knowing whether there are any good options there.

Here is the thing, the last visit from someone new I had it was me being the idiot - not letting them help me and making them feel awkward, I was just so not used to it that I wanted to kick myself afterwards. So it could all be great but the likelihood of finding a workable on the longer term is increased by perhaps not going full shock?

 

That’s definitely already a necessity and understood by my spouse without even needing any discussion. But even just a few hours during the morning and night over a couple days if I interact and get stimulation from lots of movement and talking around the house will cause me to eventually crash.

This is the first time we’ve had this discussion in 10 years because when we’ve had people visiting in previous years I could handle it better and could deal with the PEM better, now my situation is worse and I suffer more from anything.

 

my bolding
yeah... it sounds like this needs discussing @leokitten.
I wouldnt want to be feeling like that with my spouse. I'd be wanting to find out from them what they think the consequences of having the friend to stay will be for me. It never ceases to amaze me how people can suddenly lose awareness of what we're going through. It can be that we thought they got it but they dont really, or that they just somehow thought it wouldnt apply this time because.... ???

It may be that they really havent understood the impact.

I often find asking people to describe the specifics works better, because people often say they understand when they only think they do.
Obviously not wanting to put words in your mouth, but i find that sharing that i want to check i have explained myself accurately, so would they mind just explaining what they think the impact of 'x' thing will be on me? or what they have understood me to be experiencing? is helpful

Because esp with ME, invariably they have the wrong end of the stick or only half/faulty understanding, which its then easier to explain what theyre missing.

 

So hard for you this illness puts us in these horrible positions.

Hard for you spouse too this really is a crappy disease

 

Yes it is hard for him. He says he sees how terrible and painful things are, during many crashes and symptom upticks I’ve given him real-time description of what’s happening (when I can talk). Plus he’s seen the physical symptoms that aren’t invisible and couldn’t be “made up” or exaggerated, my hair falling out during crashes, my skin blowing up in rashes, severe abdominal pain at night with drenching night sweats where I have to change my shirt and pillows, and more. This illness isn’t totally invisible.

But he says a lot of times he just forgets, or that it’s tricky because I will have some better days and then it seems to just play with healthy people’s brains that they just cannot fully understand. I’ve even told him many of those “better” days I’m just putting on a happy face and pushing through because I’m tired of thinking about ME and need to escape even though the illness never goes away not even for a second.

 

@JemPD sorry I was having trouble quoting, but following your previous post I wanted to ask everyone that no matter how much you explain or show or they see do you find that healthy people can never really understand what this illness is like?

 

Same here. When I had mild ME, I used to tolerate these cultural practices and would allow people I’m not close friends with to stay in the spare bedroom. Some of these visits were incredibly annoying, up to a week of forced activity. I’ve long stopped allowing anyone to come over which means no stupid forced activities and crashing BUT peace comes at a steep price. Huge social isolation.

 

@Hutan for sure I could try to do a couple specific short events to reduce risk of PEM. That is good advice

Regarding being in the bedroom. I don’t know how to describe it, it’s not missing out at all, it just feels very weird, to me at least, when a guest who you know fairly well is in your house and instead of being part of the hosting I spend most of the time with the door closed in my room like I was a roommate. Maybe it’s also my cultural background giving me this disconnect, because this is something you just don’t do where I originally come from unless you are elderly and frail trapped in bed needing nursing care from your family, only then it’s a given you won’t come be around.

 

I used to be able to do this and was willing to for most of the time I’ve had ME. But now it’s way worse, which I hope I’ve described in enough detail. Even if I watch enough stimulating TV with my spouse or laugh too much I will get enough PEM that I want to avoid the pain now. Even doing this thread lying flat in bed I will get some PEM from it tonite. Takes my eyes and fingers lot more concentration and energy than before.

 

I’m actually not sure what she knows, she’s my spouse friend but we visited each other multiple times over the years and she’s gotten to know me well. I never described my illness to her I thought it better left to my spouse to tell her whatever he thinks she should know.