Hi Captain Awkward;
I have a boyfriend. We’ve been together for 7 years (next month, anyway – so 6 years and 11 months).
In those 7 years, obviously, things have happened. His dad died, right after I met him (and man – I felt like Typhoid Mary, for a bit!); my dad developed diabetes and I freaked; my mom remarried; my sister married – things. Things, with a capital T.
One of those Things that changed is *ME*. Shortest version I can think of: I have a genetic disease, acute intermittent porphyria. what means, realistically, is A) I hurt all the time (constant chronic pain) B) there are LOTS of things I can’t eat/take/be around C) pregnancy will kill me, D) photophobia (15 minutes of sun without 50+ sunblock equals a HORRIBLE rash) and E) doctors have spent my entire life ignoring any and everything else wrong with me.
Perfect example: my gall bladder quit working. I suffered for SIX MONTHS, because my doc kept saying “It’s the porphyria making you hurt, have some Vicodin, go away.” I had to go to a different hospital where I’d NEVER been (had NO records of me) and I did NOT (even though it could have been - almost was – deadly for doctors, especially anesthesiologists, to NOT know) tell them about the porphyria (or the fibromyalgia. for similar reasons – sick of doctors saying “It’s just the fibromyalgia” which is doctor-speak for “You’re just hysterical and making up pain for attention). I had emergency surgery and was scolded for not getting treated MONTHS earlier, because it could have killed me – because they didn’t know about my doctor, because I was afraid to tell them about the porphyria…
THAT is the reason I am disabled today – I was ALSO born with dysplasia of the right hip (your hip bone is “uneven” so it’s like your hip is always dislocated slightly). but I spend most of my 3rd grade year, when I was 8 then 9, in hospitals screaming about my legs hurting, and once doctors had the “porphyria” diagnosis, they washed their hands of me.
A couple weeks after I turned 30, I woke up, got up – and fell down.
There was so much internal damage to my hip; I’ve had 6 surgeries to fix it. SIX.
(And the thing about the doctors is RELEVANT – I was BORN with this. My surgeon requested records from UCSF, and got X-rays taken when I was 9, and *I* could see the dysplasia! but it was 1986, I was a girl, and my mom kept pushing for answers, so they looked and looked, found the porphyria – they found it very quickly, and didn’t believe it, it took 9 months and a GENETICIST to MAKE them believe it – and the WHOLE TIME they had this X-ray that SHOWED the dysplasia, and ignored it. because I was a girl. and so I was “hysterical” and either making it up for attention, or doing it because my MOM wanted attention)
So, now, I’m very, very disabled. I can’t stand for more than a few minutes, can walk MAYBE 20 or 30 feet – and I can’t SIT for then about 15 minutes.
My lowest pain level, in past TWO YEARS, has been a 7. It’s normally an 8, commonly a 9, and if I try to do ANYTHING - the dishes, a shower, sex, going someplace – I’ll be punished with level 10 pain (which, in my case, means vomiting from pain…)
On top of this, I have PTSD from a childhood of physical and sexual abuse and rape.
So… having sex isn’t really an all-the-time or all-that-often thing, and we’ve come to grips with THAT. Not easily (It can trigger my PTSD, for one thing)
But right now, as I type, my guy is over at a friend’s house. A female friend. Because her boyfriend broke up with her, called my guy, and said “hey you should come help her.”
And he won’t leave, because he’s “on suicide watch”.
I’ve been suicidal for 2 years – since I found out my present condition is PERMANENT.
He goes out DAILY. He works as a retail manager, so his working hours tend to be 1:30pm-9:30pm, he’ll come home to change, then go out. A different female friend of his is having some major medical issues. He takes her to ER at LEAST once a month – and stays. The whole time.
In 10 years of knowing each other, he has never so much as gotten out of the car when he took me to the ER (the sole, single exception was after the 2nd surgery, when I’d been trying for 6 WEEKS to get someone, ANYONE, to acknowledge that I had a major infection. My dad took me to the ER – b/f was at work – and I walked in saying “hi, I’d like to get this alien fetus aborted” because it was on the FRONT of my hip/stomach and DID look like an alien fetus. My dad called him at work, and b/f thought I was DYING, and forced someone to come in so he could come to the hospital. And to be fair, it was MRSA, so I *could* have died…)
All those weeks after all those surgeries, I’d be LUCKY if he visited me 4 times a week – when I was in the rehab hospital after one of them, he came ONCE A WEEK.But he sits in the ER with her for hours, and when she’s hospitalized he’s there every day.
It’s not JUST these two women - it’s ANY friend of his. If ANYONE has a problem, he bends over backwards to help them – while leaving me alone sometimes 20 hours at a time (more, if there’s a con) despite knowing there are times I literally cannot move without help. I have, more than once, lain in bed having to use the restroom for HOURS, waiting for him to get home from work – only to get a call telling me he was going straight out.
And he doesn’t get it.
What I love about him is how much he helps people. How he’ll do anything, just about, for a friend From this, I’ve concluded I’m not “people” and I’m not his “friend”.
He swears he loves me. We don’t break up (I don’t want to, either – I just want the same level of attention as any random friend gets!). He doesn’t want to, he loves me -
He just doesn’t seem to want to DO anything.
Oh, when he’s here, he’ll get me drinks, and sometimes [not always - there are LOTS of days I don't get to eat, because I'm incapable of making something and he "doesn't feel like"] getting me food. Right now, he’s paying all the bills, because we’re waiting on my SSI/SSDI (couple more months, I’m told).
I HAVE tried saying “look, it’s great that you’re a great friend, the problem is that *I* don’t get any of that. You don’t do those things for me. When I told you I was suicidal, you ignored it. When I need to go to the ER, it’s all I can do to get you to TAKE me. When I need you to just “keep me company because I’m depressed”, you go out. AFTER I tell you I’m depressed and could use company.
And all – ALL – he hears is “she’s jealous of this girl” and I get “reassured” that he’s not having sex with anyone else. the ONLY time I have been “jealous” in that sense was *when he slept with someone else* (right after his dad died, I UNDERSTOOD – but she was quite maliciously trying to break us up – she even told HIM so – so I think I was justified in saying “I don’t want her around”) I canNOT seem to get across to him “I’m your girlfriend of 7 years, the one you say you love above everyone else, the one you say you’ll die for – and I NEED at LEAST as much effort as you’re giving to this woman you met 6 months ago and barely know!”
How do I get this across to him? He’s the least self-aware person on the planet, and is utterly clueless in so many social ways – he almost like a person who was raised by wild animals, that’s how UNsocialized he is.
I lie here, day after, ALIVE literally only because I don’t want to hurt HIM by dying on him (he lost his mother 2 years b4 we got together, found out she was really his GRANDmother, then his sister-who-was-really-his-mother died less than a month later, and 6 months after we got together his dad died – and his one surviving sister is a crack-addict who only calls when she wants money. me, and my family, are quite literally the ONLY family he has. It would break him if I killed myself)
But why shouldn’t I? Seriously – I’m looking at what, 50 more years of THIS? and if I’m lucky, those 50 more years will include a guy who claims to love me so much that he’d die to fix me, but can’t be fucked to HELP me, beyond menial tasks I could HIRE someone to do? I don’t want him to be the person who brings me drinks; I want him to be my PARTNER, to help where he can and console where he can’t.
And all he hears is “She’s jealous of my friends!”
How do I get him to HEAR what I am ACTUALLY saying?
Desperately Seeking Communication
This letter is painful to read. Pain comes across in every word and in every space between every word. If this were the Buffyverse, D’Hoffryn would have showed up by your bedside to see if you wanted to be a vengeance demon by now. (If a lady with an ornate necklace tries to get you to make a wish, please, I beg you…don’t. )
I think there is a lot of wisdom, community, and support to be had at the ChronicBabe site, and I especially recommend you to this list of resources on love, relationships, and chronic illness. I’m going to ask Editrix Jenni to weigh in on your question here, but until she does, here’s what I got.
Fixing things with your boyfriend is going to take a lot more than a witty speech penned by yours truly. I think there is stuff you can do for yourself that will also improve things with him (or put you in a better position should either of you decide to bail), but it’s hard stuff and it might be hard stuff that you’ve tried before, so I’m dreading asking you to try it again.
What you have is two really unhappy people with a long history of weathering storms together. It is not okay for you to be lying in the bed day after day without food or company. That’s just…not okay. And listen, I know what it looks like when someone will do anything to avoid being home. Extra shifts at work. Coming home only to shower and change and going back out again. It’s possible these women are really suicidal or ill and need him by their bedside, or it’s possible that he’s decided that “I have to go! It’s tragedy!” is putting it in a language you understand while really he’s fucking their brains out or playing fantasy baseball or having a quiet solo read at the library. Is it caregiver fatigue? I don’t know what’s going on, but that is a man who does not want to be at home, with you.
You need a team of three people in your life right now. If I had a time machine, I would take you back in time so that you could have them starting yesterday. They are:
- A Therapist
- A New Primary Care Doc
- A Home Health Aide (Or whatever you call a person who checks in on you a few times a day, makes you a snack, helps you take care of your needs. You said you could just hire someone to do the tasks your boyfriend won’t do for you. Hire someone. Hire them now.).
I don’t want to insult your intelligence by suggesting stuff that you’ve tried before or that they are easy to acquire in our messed up health care system, but these three people are really not negotiable. You need them in your life.
Right now, the thing you seem to be saying to your boyfriend is “I’m the most pitiful, so I deserve more.“ Are those really the grounds you want to play on? Is that a contest you want to win? Having a team of people to help you manage both your condition and the very real emotional side effects of that condition is going to help you stand up for yourself with doctors and with your boyfriend in a way likely to get results.
For example, you told me your entire health history going back to something bad that happened when you were 9. I didn’t need to know that – I just believe you. I believe you that you are in pain and that you need more care than you are getting. I could have edited it out, but it seemed really important to the story you were telling about your life, so I left it in. But it’s not really part of the current problem with your boyfriend, unless the problem you are having with him is that he doesn’t take your illness seriously or really believe you are in pain. Is that what’s going on?
A therapist can help you really feel and grieve for that little girl who wasn’t believed – who is still not believed – and also come up with ways for you to talk to your boyfriend about not only your care but your relationship and the parts of your relationship that aren’t about your care. A good therapist can also help you with scripts for talking to doctors. And help you deal with the abuse you suffered as a child (Oh, by the way…) and the crushing depression that bleeds through your letter.
I haven’t had to eat even a morsel of the shit sandwich that life has handed you, but as a fat person I’ve definitely encountered lazy or skeptical doctors who want to attribute everything to the weight. And I had to work with my therapist (and a really supportive community of Fat-o-sphere bloggers like The Rotund and Kate Harding and the First Do No Harm folks) to figure out how to say “Look, what would you do if a thin person presented the same set of symptoms that I have? Can you please do that?” and not give up on my own care. What worked: Being calm and reasonable (even when I didn’t feel that way) and presenting the doctors only with some positive thing they could do for me (they like that sort of thing). What did not work: Telling them old stories about not being cared for correctly or believed. Their defensive reaction kicked in and they wrote me off as a crazy. Which is fair – Not being believed or listened to for so long while chronic asthma went untreated, I felt crazy and I acted crazy. I used to have to rehearse doctor visits with my therapist. Result: A really good doctor who listens to me. It took two years to find her.
With your boyfriend, a therapist can help you change the conversation. “WHY do you NEVER come into the emergency room with me when you ALWAYS go in with HER?” can become, in the moment, “Hey, can you come in and sit with me for a while?” The second is you honestly expressing a need to someone you love. The first is blaming and keeping score. It may be based on really valid stuff, but as a communication style it is tailor-made to alienate the person you are talking to. The way that fight plays out in my head, he’s going to list all the things he DOES do for you and you’re going to list the things he DOESN’T do for you and he’ll leave and slam the door and you can’t because…you can’t leave. And you can’t eat or poop until he comes back, and if I were your boyfriend and you talked to me that way enough times I might not come back and if I were you and I’d been left alone enough days I might not want him to come back. You have to find a way to let go of the story that you are the person who is not valued enough or believed, because if that’s the story you take into every interaction, you make it true and then it snowballs forward…forever. It’s fucking tragic, and I ache for you. But by hook or by crook, you have to figure out how to stop being that person, or you will always be that person.
So, yeah, a therapist. And a person who can come in and make you regular meals/snacks, help you get back and forth from the bathroom, and make sure you never spend long days not eating or moving. And a new doctor who can help guide you to specialists and help you come up with a treatment plan for managing your illness.
What I want is for you and your boyfriend to sit down and talk about your relationship. What do you love about each other? What makes you happy? How will you manage the future together – sex, money, health? But you can’t do that if you’re this dependent on him and this angry at him (and if you’re expressing contempt, like telling me that he is unsocialized and raised by wild animals and talking in ANGRY CAPS), and you also can’t do that if he’s avoiding you and your home. You need to renegotiate the terms of your relationship, and I think your best shot is to get as many of your medical and routine care needs met as possible so that you can meet him across a table less as a patient and more as a lover.
I’m sorry I can’t be more helpful. The situation sounds extremely dysfunctional and painful, and this is my best guess at what will help.