I don't know how this is relevant to HN but it feels well timed, for me.
My wife is alive. She doesn't a terminal diagnosis. But for the last five years, she's had no diagnosis. Visually, she's stunning and fit. According to every test they run on her, there appears to be nothing wrong. There's no explanation for the temporary blindness, the rapid onset arthritis, the partial spinal fusion, the diverticulitis, the random bleeding, the persistent fluid buildup and inflammation or the new magical DVT they found when looking for something else. It could be autoimmune, it could not be, I could be anything at this point. And there's no one who either wants to or is qualified to look.
I lost it after the title and lost it more through the first section. I couldn't even tell my wife what I was reading, when she came into the room. This story is the tale of all my fears. But where's he's poor, I'm not and where he has community, however temporary and dwindling, I don't.
I cannot imagine having to explain to our daughter that mommy is gone but I'm constantly thinking about the possibility of it. I've been worrying about this eventually for a couple years now and I don't know where people find the strength but somehow they do.
I feel for the author. I dread his reality every day.
You might consider going to the Mayo Clinic in Rochester, MN. It’s world renowned for diagnosis. My wife had various, random symptoms and all local doctors were either baffled or suggesting absurd things in desperation. In two days a doctor at Mayo correctly diagnosed the issue and offered suggestions on treatment that worked. The local doctors were both disbelieving and angry.
Diagnosis was POTS (brought on by pregnancy) and the solution was exercise. Most doctors gravitated to a cardiological issue and prescribed various blood pressure medicine - none of which helped.
Aside from actual medical capability, the place is astoundingly futuristic. The entire process is streamlined. Everything is done within a few days, doctors and lab visits are coordinated and scheduled dynamically and in real time, discussions and investigations are immediately synced with an app, etc. It was…mind blowing to say the least.
Right there with you. We had a scare where my wife had to go to the hospital and stay at the emergency room for four days for stroke-like symptoms. She has many of the symptoms you've listed, and though her assigned emergency room doctor was unwilling to provide a diagnosis, it turns out that that thyroid medication has helped stabilize her condition.
What's baffling is the lack of any sort of help at the hospital and the inability to find a rheumatologist or specialist or just a regular doctor who gives a damn. They will maximize wealth extraction from their patients and provide no meaningful service. Every step of the way has felt like gross negligence when it comes my wife's medical care.
I have a couple of young kids. I stopped reading the article because I don't want to imagine my children growing up without their mother.
Very sorry to hear that. Have they performed a CT scan or MRI? Have they ruled out MS? Some of the symptoms you mentioned might be caused by MS (Multiple Sclerosis).
Hello. I'm just a (bad) med student and I'm not qualified to make any diagnosis, but I think the clinical picture you have reported warrants further investigations and I wanted to share my thoughts while I was reading your post.
In the demographic of woman of child-bearing age the coexistence of more than one autoimmune diseases is not uncommon. Occasionally, there are even combinations of several of them [1]. As you've written, the manifestations you have reported may or may not be caused by one or more autoimmune diseases, but the ones that tipically keep autoimmune/rheumatologic origin in consideration even when labs are negative are the partial spinal fusion and the arthritis [3][2].
> According to every test they run on her, there appears to be nothing wrong
Does it? We have:
- clinical picture strongly suggesting some rheumatologic disesease: inflammation and rapid onset arthritis are typical, but DVT, random bleeding may also be linked.
- radiographic evidence of spinal fusion.
And that's exactly how (eg) Ankylosing Spondylitis has been diagnosed classically (i.e. when MRI was not an option) [4]. More generally speaking, as the name suggests, the diagnosis of most Seronegative Spondyloarthropathies is based more on clinical than laboratory criteria [3]. For how I understand it, ideally AS would be diagnosed before spinal fusion happens, but when it's present and there isn't a more likely explanation AS would be at the top of the differential diagnosis.
Another thing that came to my mind when reading DVT, bleeding, vision loss was that these are more typically seen together in of some kind of vasculitides, hence why I mentioned above an the possibiity of multiple autoimmune diseases, but these could also be explained by anything altering Virchow's triad.
> There's no explanation for the temporary blindness, the rapid onset arthritis, the partial spinal fusion, the diverticulitis, the random bleeding,
That sounds somewhat strange. While for temporary blindness, diverticulitis and DVT the cause may already be gone by the time the patient arrives at observation, at least for rapid onset arthritis, spinal fusion and random bleeding I think a diagnosis of the cause should be made.
The reason why rheumatologic diseases should be diagnosed is that if left untreated there will be periods of remission, when nothing happens, and periods of activity, when irreversible damage accumulates. Another reason to diagnose rheumatologic diseases is that they may themselves be manifestations of some other condition (e.g. rheumatologic paraneoplastic syndromes). We don't know if your wife actually has a disease, it may be not, but that's not a risk a doctor would leave to chance. It's just standard practice.
As I've already written I'm not a doctor, but if I may give you my advice anyway I would say your wife should go and see a rheumatologist.
> There's no one who either wants to or is qualified to look.
If I were in you, at this point I would go to some known research center with maybe a university department or ward.
This is a heartbreaking piece of writing. Engaging and wistful. I feel this person’s pain, and I wish I could hug them to say that the pain and loss they experience
Will pass some day.
But life doesn’t give us such affordances. And this man has to deal with the most personal loss and simultaneously be the rock his daughter needs to rely on.
This hurts my heart. It hurts my soul (should such a thing exist).
All I can offer is the hope that by the time I finish reading, he has peace, and his daughter years from now knows the strength of will and the work he has done to be so present for her.
Oh God, I saw the title and was kind of scared of reading this... I mean, I'm young still, not married or anything, but, I think I am a very empathetic person and kind of like to be understanding of other people's lives and feelings, maybe because I feel it's a way of expanding my own life perspective or something, but anyway I was reading this and feeling pretty emotional during the whole thing and then I read the final sentence that Lilly said and I basically just... Started crying, so those were a few awkward minutes... It's an extremely raw and well-written piece... Ahh that's a strange way to feel on a Sunday...
I don’t mean to police you and you probably don’t mean harm, but what you said and how you said it is bound to rub someone off the wrong way in the future.
In general, don’t tell people who are going through something that you empathize with their struggles, real and painful struggles which you have no share in suffering, because you benefit from their stories by making you wiser about life. It’s also presumptuous to say that you understand other people’s lives or experiences because you heard or read a small part of what they’re going through.
Empathy is about seeing another person as a dignified equal, making no judgments, sharing that person’s pain, and gaining nothing from it.
I love this YouTube channel "camping with steve". He recently lost his wife suddenly and I'm grateful for him sharing his journey with me and others (via his YouTube channel). Life is hard, we need to help eachother.
Ah yes, so sad. I'd only watched two or three of his stealth camping episodes, enjoyed it, and then a few days days later that video pops up on my YouTube homepage...
I know what it is like to be asked that unanswerable question: “where is mummy?” I gasped when it appeared at the end of the essay.
The thing about having a kid is you have to get up and keep moving. The author decided to clean up and shave, but even if you don’t you can’t spend all your time moping. The kid needs your help.
My best friend’s wife is in the process of dying right now after qualifying for and self-choosing hospice following persistent and progressing medical issues. He was looking for graveyards yesterday while she continues to pass… I am one of his primary support structures and this is hard for me, too. I just want to be as normal as possible for/around him, to be a rock. But I have never been in this position for someone before and I don’t know what would be most helpful. If anyone has, or possessed the empathy and EQ to be truly attuned to an impossible situation like this, can you please reach me through my profile or respond to this comment? With gratitude in advance.
(My partner died two months ago and I was left to care for a 20 month old toddler)
If you're one of his primary support structures, you're already doing great. If you weren't, he'd have chosen someone else.
Some situations just suck. Don't expect to be able to miraculously help your friend. Don't expect him to get better quickly. Perhaps he will, perhaps he won't. You're there for him, that's mostly all you can do.
If you must, ask him how else you can help. Each situation is different and each person is different, he'll know better than me.
When my sister was sick the best thing we had was an entire church community helping us out - people taking turns babysitting, various people bringing food to us, people I barely knew and friends of people I barely knew offering help, people simply hanging out and being there for us, tons of people who had been thru similar things telling me I could call them at any time (I never did because I had trouble asking for help and acknowledging my emotions back then)
What I’m getting at is I’d assume the more of a community you can get around the situation, the better - and the greater the variety of needs that can be serviced (emotional or time-based) and the longer lasting that help can last. In a similar way to how constructing an org can be a lot more robust and capable than trying to solo a project
Sometimes just having someone(s) do some PM work to manage funeral arrangements, life insurance arrangements, closing down accounts, manage beneficiary distributions etc can be very helpful if motivation/discipline is hard or stressful to come by
Food for thought: after my sister and dad passed I had tons of people ask me how I was doing / “please you can talk to me anytime” and I’d say “I’m good” even though I was plagued with burnout, depression, anxiety for a few years etc. I’m in a much better spot now, but what I’m getting at is there can be a problem of that it may be near impossible to actually know how the person is doing, especially if they’re the type of person who doesn’t like sharing emotions or being a burden on others. Not exactly sure what you can do to fix it, just pointing it out
Just listen. Be thoughtful. Let him lean on you. It will be a heavy burden, but for those you love, no burden is too great.
My brother-in-law passed about 6 years ago, after dealing with strokes, seizures, etc. I was in the room with my sister-in-law and him when they took him off life support (no brain activity). His illness was long, and he suffered. I wished he hadn't. He was a great guy, and I miss him.
My SIL has a large extended family, and we all helped out. Sometimes, just being in the same room, bringing things over, listening is just what the (real) doctors order.
Just be there, be present. Look for him struggling with something, and help him do that thing. Don't ask, don't push your way in to it. If it looks like he can't do simple things, let him grieve, and you handle those. He will need processing time. Help him get it. Some people need to be busy with physical things to process. Some people need to be alone to process. But they need people nearby, even if alone.
Everyone is different, every person processes grief differently. There's no real "right" way for this. And be aware that after a time, he may want to change some things in his life, to not be reminded of this time. This is not necessarily burying it. It is moving on.
your friends wife is at the center, your friend is the inner circle, next are his family and you. you are supporting those inside the circle, and you get help from outside the circle.
HN is the furthermost layer outside. maybe you have friends that you can turn to for your support, but if not, reaching out here on HN is the right direction. you are welcome to dump your pain here or in private to anyone who offers to listen.
i have been on that inner circle before, and on outer ones. feel free to reach out.
Thanks for posting, but this (and all other links to this site) are unreadable due to ads that cover the text, so it doesn't really help with paywalled sites. Edit: Here's a screenshot for the curious: https://github.com/bachmeil/screenshots/blob/main/ads-over-t...
>If she does not understand or employ traditional feminine wiles that, offensive though it may be to admit, are necessary to getting along in a patriarchy?
Of course. No one defies gender roles in the modern West. There are no large, media/ruling class celebrated subcultures of people who do not follow gender roles. All conform.
To be less tongue in cheek, no it’s not true. Life is harder if you’re weird but plenty of people are abnormal to the level of dysfunction and severe negative consequences and they get by. Plenty of others conform to gender roles and have a shit time anyway.
It’s a lot easier to make it as a member of the journalist class if you say what the author did about the patriarchy, of course.
Yes. Well perhaps not feminine wiles, but a greater degree of determination than men need.
Even here in Norway, which is a bastion of egalitarianism, men still have life time earnings substantially in excess of women and are a larger proportion of industrial workers, politicians, and board members.
In other societies that are less advanced in this respect I can easily imagine that the occasional wielding of a 'feminine wile' might count for something.
The idea that we live in a patriarchy is laughable to me, but as a woman myself, I'd say that yes, knowing how to interact with men as a woman — "feminine wiles" — is very useful. If not indispensable.
I stopped reading at the 3rd paragraph. Not that the article was bad. But that it took me to a difficult place[1], where I had to consider the "what if" scenarios that I dreaded.
It sounds like this happened around the same time as our experience. What I recall of my experience, I went into sort of a relentlessly optimistic support guy. Suppressing everything I was thinking and worrying about, so as to take care of my family.
Our outcome was different. My wife of 31+ years is sitting a mere 1 meter from me on our couch, watching a TV show with our 22 year old daughter (12 at the time of the event). She is officially a survivor.
I've commented to my therapist that there really doesn't seem to be much support for families/spouses for survivors. This was a tremendously traumatic experience, that I only started addressing last year. Vocalizing your fears is hard, after you've buried them for so long to support your family.
I'm sure this is a good article. I just can't read beyond where I went. Likewise, the last episode of "How I met your mother" hit me very hard (1 scene, barely 30 seconds). I've never been able to complete that.
Its not that I can't watch/read these things, its that it resonates uncomfortably with my own experiences, and I don't wish to experience that discomfort if at all possible.
[+] [-] neonate|3 years ago|reply
https://archive.ph/r4Glj
[+] [-] igetspam|3 years ago|reply
My wife is alive. She doesn't a terminal diagnosis. But for the last five years, she's had no diagnosis. Visually, she's stunning and fit. According to every test they run on her, there appears to be nothing wrong. There's no explanation for the temporary blindness, the rapid onset arthritis, the partial spinal fusion, the diverticulitis, the random bleeding, the persistent fluid buildup and inflammation or the new magical DVT they found when looking for something else. It could be autoimmune, it could not be, I could be anything at this point. And there's no one who either wants to or is qualified to look.
I lost it after the title and lost it more through the first section. I couldn't even tell my wife what I was reading, when she came into the room. This story is the tale of all my fears. But where's he's poor, I'm not and where he has community, however temporary and dwindling, I don't.
I cannot imagine having to explain to our daughter that mommy is gone but I'm constantly thinking about the possibility of it. I've been worrying about this eventually for a couple years now and I don't know where people find the strength but somehow they do.
I feel for the author. I dread his reality every day.
[+] [-] berdon|3 years ago|reply
Diagnosis was POTS (brought on by pregnancy) and the solution was exercise. Most doctors gravitated to a cardiological issue and prescribed various blood pressure medicine - none of which helped.
Aside from actual medical capability, the place is astoundingly futuristic. The entire process is streamlined. Everything is done within a few days, doctors and lab visits are coordinated and scheduled dynamically and in real time, discussions and investigations are immediately synced with an app, etc. It was…mind blowing to say the least.
[+] [-] cfeduke|3 years ago|reply
What's baffling is the lack of any sort of help at the hospital and the inability to find a rheumatologist or specialist or just a regular doctor who gives a damn. They will maximize wealth extraction from their patients and provide no meaningful service. Every step of the way has felt like gross negligence when it comes my wife's medical care.
I have a couple of young kids. I stopped reading the article because I don't want to imagine my children growing up without their mother.
[+] [-] DoreenMichele|3 years ago|reply
I hope you get answers. Sometimes people do finally get answers and sometimes it's life changing in a very positive way.
[+] [-] ethotool|3 years ago|reply
[+] [-] spellcard199|3 years ago|reply
In the demographic of woman of child-bearing age the coexistence of more than one autoimmune diseases is not uncommon. Occasionally, there are even combinations of several of them [1]. As you've written, the manifestations you have reported may or may not be caused by one or more autoimmune diseases, but the ones that tipically keep autoimmune/rheumatologic origin in consideration even when labs are negative are the partial spinal fusion and the arthritis [3][2].
> According to every test they run on her, there appears to be nothing wrong
Does it? We have:
- clinical picture strongly suggesting some rheumatologic disesease: inflammation and rapid onset arthritis are typical, but DVT, random bleeding may also be linked.
- radiographic evidence of spinal fusion.
And that's exactly how (eg) Ankylosing Spondylitis has been diagnosed classically (i.e. when MRI was not an option) [4]. More generally speaking, as the name suggests, the diagnosis of most Seronegative Spondyloarthropathies is based more on clinical than laboratory criteria [3]. For how I understand it, ideally AS would be diagnosed before spinal fusion happens, but when it's present and there isn't a more likely explanation AS would be at the top of the differential diagnosis.
Another thing that came to my mind when reading DVT, bleeding, vision loss was that these are more typically seen together in of some kind of vasculitides, hence why I mentioned above an the possibiity of multiple autoimmune diseases, but these could also be explained by anything altering Virchow's triad.
> There's no explanation for the temporary blindness, the rapid onset arthritis, the partial spinal fusion, the diverticulitis, the random bleeding,
That sounds somewhat strange. While for temporary blindness, diverticulitis and DVT the cause may already be gone by the time the patient arrives at observation, at least for rapid onset arthritis, spinal fusion and random bleeding I think a diagnosis of the cause should be made.
The reason why rheumatologic diseases should be diagnosed is that if left untreated there will be periods of remission, when nothing happens, and periods of activity, when irreversible damage accumulates. Another reason to diagnose rheumatologic diseases is that they may themselves be manifestations of some other condition (e.g. rheumatologic paraneoplastic syndromes). We don't know if your wife actually has a disease, it may be not, but that's not a risk a doctor would leave to chance. It's just standard practice.
As I've already written I'm not a doctor, but if I may give you my advice anyway I would say your wife should go and see a rheumatologist.
> There's no one who either wants to or is qualified to look.
If I were in you, at this point I would go to some known research center with maybe a university department or ward.
[1] [Coexistence of Axial Spondyloarthritis, Systemic Lupus Erythematosus, Sjögren’s Syndrome and Secondary Antiphospholipid Syndrome: Case Report](https://dergipark.org.tr/en/download/article-file/1615538)
[2] [Approaching the Patient with "Joint Pain" - CRASH! Medical Review Series ](https://www.youtube.com/watch?v=sfKWNeAywak&t=195s)
[3] [Seronegative Spondyloarthropathies - CRASH! Medical Review Series](https://youtu.be/hvQkROf5rsQ?t=377)
[4] [Progression of Spinal Fusion in Ankylosing Spondylitis](https://clinicaltrials.gov/ct2/show/NCT00085995)
[+] [-] John23832|3 years ago|reply
[+] [-] davidgatti|3 years ago|reply
[deleted]
[+] [-] swottler|3 years ago|reply
[deleted]
[+] [-] sniperjoe360|3 years ago|reply
[+] [-] Tsiklon|3 years ago|reply
But life doesn’t give us such affordances. And this man has to deal with the most personal loss and simultaneously be the rock his daughter needs to rely on.
This hurts my heart. It hurts my soul (should such a thing exist).
All I can offer is the hope that by the time I finish reading, he has peace, and his daughter years from now knows the strength of will and the work he has done to be so present for her.
[+] [-] brunooliv|3 years ago|reply
[+] [-] rTX5CMRXIfFG|3 years ago|reply
In general, don’t tell people who are going through something that you empathize with their struggles, real and painful struggles which you have no share in suffering, because you benefit from their stories by making you wiser about life. It’s also presumptuous to say that you understand other people’s lives or experiences because you heard or read a small part of what they’re going through.
Empathy is about seeing another person as a dignified equal, making no judgments, sharing that person’s pain, and gaining nothing from it.
[+] [-] iancmceachern|3 years ago|reply
[+] [-] stephen_g|3 years ago|reply
[+] [-] gumby|3 years ago|reply
The thing about having a kid is you have to get up and keep moving. The author decided to clean up and shave, but even if you don’t you can’t spend all your time moping. The kid needs your help.
[+] [-] tasuki|3 years ago|reply
Completely true that a kid keeps you moving and that's very helpful.
[+] [-] robertk|3 years ago|reply
[+] [-] tasuki|3 years ago|reply
If you're one of his primary support structures, you're already doing great. If you weren't, he'd have chosen someone else.
Some situations just suck. Don't expect to be able to miraculously help your friend. Don't expect him to get better quickly. Perhaps he will, perhaps he won't. You're there for him, that's mostly all you can do.
If you must, ask him how else you can help. Each situation is different and each person is different, he'll know better than me.
[+] [-] johnsimer|3 years ago|reply
What I’m getting at is I’d assume the more of a community you can get around the situation, the better - and the greater the variety of needs that can be serviced (emotional or time-based) and the longer lasting that help can last. In a similar way to how constructing an org can be a lot more robust and capable than trying to solo a project
Sometimes just having someone(s) do some PM work to manage funeral arrangements, life insurance arrangements, closing down accounts, manage beneficiary distributions etc can be very helpful if motivation/discipline is hard or stressful to come by
Food for thought: after my sister and dad passed I had tons of people ask me how I was doing / “please you can talk to me anytime” and I’d say “I’m good” even though I was plagued with burnout, depression, anxiety for a few years etc. I’m in a much better spot now, but what I’m getting at is there can be a problem of that it may be near impossible to actually know how the person is doing, especially if they’re the type of person who doesn’t like sharing emotions or being a burden on others. Not exactly sure what you can do to fix it, just pointing it out
[+] [-] hpcjoe|3 years ago|reply
My brother-in-law passed about 6 years ago, after dealing with strokes, seizures, etc. I was in the room with my sister-in-law and him when they took him off life support (no brain activity). His illness was long, and he suffered. I wished he hadn't. He was a great guy, and I miss him.
My SIL has a large extended family, and we all helped out. Sometimes, just being in the same room, bringing things over, listening is just what the (real) doctors order.
Just be there, be present. Look for him struggling with something, and help him do that thing. Don't ask, don't push your way in to it. If it looks like he can't do simple things, let him grieve, and you handle those. He will need processing time. Help him get it. Some people need to be busy with physical things to process. Some people need to be alone to process. But they need people nearby, even if alone.
Everyone is different, every person processes grief differently. There's no real "right" way for this. And be aware that after a time, he may want to change some things in his life, to not be reminded of this time. This is not necessarily burying it. It is moving on.
[+] [-] em-bee|3 years ago|reply
your friend is supporting his wife, and she shares her pain and grief with him, while he shares his pain and grief with you.
here is an interesting article that describes this support model as multiple rings around the person that is sick.
https://www.latimes.com/opinion/op-ed/la-xpm-2013-apr-07-la-...
your friends wife is at the center, your friend is the inner circle, next are his family and you. you are supporting those inside the circle, and you get help from outside the circle.
HN is the furthermost layer outside. maybe you have friends that you can turn to for your support, but if not, reaching out here on HN is the right direction. you are welcome to dump your pain here or in private to anyone who offers to listen.
i have been on that inner circle before, and on outer ones. feel free to reach out.
[+] [-] johnsimer|3 years ago|reply
[+] [-] pinewurst|3 years ago|reply
[+] [-] bachmeier|3 years ago|reply
[+] [-] belkarx|3 years ago|reply
Is this really true in this day and age?
[+] [-] barry-cotter|3 years ago|reply
To be less tongue in cheek, no it’s not true. Life is harder if you’re weird but plenty of people are abnormal to the level of dysfunction and severe negative consequences and they get by. Plenty of others conform to gender roles and have a shit time anyway.
It’s a lot easier to make it as a member of the journalist class if you say what the author did about the patriarchy, of course.
[+] [-] kwhitefoot|3 years ago|reply
Even here in Norway, which is a bastion of egalitarianism, men still have life time earnings substantially in excess of women and are a larger proportion of industrial workers, politicians, and board members.
In other societies that are less advanced in this respect I can easily imagine that the occasional wielding of a 'feminine wile' might count for something.
[+] [-] exolymph|3 years ago|reply
[+] [-] hpcjoe|3 years ago|reply
It sounds like this happened around the same time as our experience. What I recall of my experience, I went into sort of a relentlessly optimistic support guy. Suppressing everything I was thinking and worrying about, so as to take care of my family.
Our outcome was different. My wife of 31+ years is sitting a mere 1 meter from me on our couch, watching a TV show with our 22 year old daughter (12 at the time of the event). She is officially a survivor.
I've commented to my therapist that there really doesn't seem to be much support for families/spouses for survivors. This was a tremendously traumatic experience, that I only started addressing last year. Vocalizing your fears is hard, after you've buried them for so long to support your family.
I'm sure this is a good article. I just can't read beyond where I went. Likewise, the last episode of "How I met your mother" hit me very hard (1 scene, barely 30 seconds). I've never been able to complete that.
Its not that I can't watch/read these things, its that it resonates uncomfortably with my own experiences, and I don't wish to experience that discomfort if at all possible.
[1] https://blog.scalability.org/2011/11/ot-it-really-focuses-yo...
[+] [-] jackblemming|3 years ago|reply
[+] [-] etimberg|3 years ago|reply
[+] [-] unknown|3 years ago|reply
[deleted]
[+] [-] olliej|3 years ago|reply
[+] [-] nokya|3 years ago|reply
And, after reading it, I agree. You summarized it right: a gut punch, but it felt damn good.
[+] [-] js2|3 years ago|reply
https://en.wikipedia.org/wiki/Charles_Bock
[+] [-] Tade0|3 years ago|reply
[+] [-] unknown|3 years ago|reply
[deleted]
[+] [-] tomerbd|3 years ago|reply
[+] [-] CapitalistCartr|3 years ago|reply
[+] [-] wizwit999|3 years ago|reply