
How Our Relationship Survived When My Partner Got Sick - NaOH
https://www.menshealth.com/health/a25225033/male-caregivers/
======
monodeldiablo
I lost my best friend last year to Crohn's disease. He was only 33 years old
and left behind a 5 year old son.

The utter helplessness in the face of such horrific suffering and interminable
decline is a pain I wish nobody had to endure.

As my friend worsened, I would rage at friends and family who peddled false
hope with their quack "cures", internet remedies, and religious nonsense. But
he was the picture of grace throughout his final decline, warmly welcoming
visits.

The last time I saw him, he wanted to just chat for a few hours. But I
couldn't sit still. I massaged his feet and refilled his water bottle and
shifted his body to provide a little relief from the constant discomfort of
bedridden life.

At the time, I thought I was helping him. But I realized after he was gone
that he was helping me, giving me something to do so that I didn't feel so
damn powerless.

I don't know why I'm writing this. I haven't really talked about it with
anyone. I think about him every day, and my heart goes out to anybody
suffering from a debilitating disease -- both the sufferers and their
caregivers. Every day becomes a fight for dignity and humanity.

If I took any lessons away from the horror of that year, it's the power of
listening. Just listen. Don't try to judge or fix or explain anything.

I think I helped most when I just sat and listened. I wish I had done it more.

~~~
vi1rus
You are a good person. The fact that you reflected on this says so.

Don't get stuck on wishing you listened more.

Call his wife, see if she needs anything like fixing a fence, water faucets
etc.

------
latchkey
This is a great story of love. Mine is kind of the opposite...

My ex-wife got early onset rheumatoid arthritis. It took a long time to
diagnose, but once we did, it was a relief to know what we needed to treat. We
spent years going doctors, trying various medications and generally taking
care of her health with no expense spared. Eventually, despite all of our
efforts, our relationship grew further and further apart and I finally asked
to separate (after about 10 years together). It was the most difficult thing
I've ever done, partly because it was traumatic to let go of someone who was
sick.

As crazy as it sounds, after we separated, she found a shaman in the jungles
of Peru and moved there from San Francisco to be healed. Today, she shows no
signs of RA (has even come back to the US a few times for 'real' testing) and
she is healthy and happy. I now live in Vietnam and I'm happier than I've ever
been in my life.

Despite all the difficulties, separation was the best for both of us. We are
still friends and keep in touch online.

~~~
bigmit37
I’m curious to hear more about shaman experience as I have some anxiety-like
issues that no type of medicine/ therapy seems to be helping with.

~~~
latchkey
Sorry, I don't know exactly which program she went with, but she's been down
there for a couple years and I think pretty well connected into it.

keywords in google are "peru jungle shaman"

involves taking ayahuasca and other jungle made substances

do your research, i think there is some definitely sketchy outfits, but there
are good ones too.

------
cameronh90
To echo others in this thread, sadly, my relationship did not survive my
partner's mental illness.

My girlfriend had a quite extreme form of borderline personality disorder,
possibly with schizophrenia - but it's hard to know exactly because she would
often be uncooperative with professionals and was often using drugs. She also
didn't talk to her family, but never told me why.

Eventually, after struggling for more than five years, I threw in the towel
and broke up with her. I still supported her financially, because she was
incapable of work, and was trying to encourage her to seek professional help.

Within a few months, she had committed suicide and left a note blaming me for
leaving her.

I found out later, after contacting her family, that she had two children by
different fathers that she had left with her parents then ran away from -
among a ton of other things she did to ruin the lives of anyone who ever knew
her.

I spread her ashes last month with her sister who hadn't spoken to her in over
10 years.

It has hit me quite badly, and often I regret breaking up with her considering
what happened, but deep down I knew I couldn't continue. It was affecting my
own mental health so badly that I was struggling keeping myself afloat. The
best thing for her would probably have been to call it off much sooner, before
she became too dependent on me - but the guilt of breaking up with someone who
is severely ill meant I couldn't bring myself to it until I could no longer
cope.

As nice a story as the article is, my advice would be that you do have to
consider your own life as well. If you can't look after yourself, you can't
look after someone else.

~~~
wglb
_my advice would be that you do have to consider your own life as well._

I think this is an excellent thought.

I am told by someone who is a professional counselor that therapists who have
patients with borderline personality disorder have to reduce their other
caseload significantly.

------
covercash
I mod r/CrohnsDisease and try to make sure every text post gets at least one
thoughtful reply. We’re here for anyone with IBD/Crohn’s/Colitis as well as
friends & family of those who have it (since it can be just as difficult for
them.)

[https://reddit.com/r/CrohnsDisease](https://reddit.com/r/CrohnsDisease)

~~~
Zamicol
Hello from /r/Celiac. I'll link you on the sidebar.

------
justanother
Wife has Scheuermann's and Levoscoliosis (spinal deformities) and spends a
large (often majority) percentage of her time in agony. American doctors
refuse to give her opioids because their idea of resolving the 'opioid crisis'
is to not help anyone (because the DEA is up their asses for every script they
write), and since most of them haven't heard of her issues, they shrug their
shoulders and recommend physical therapy, for someone who can't get out of
bed. Yes, her pain has driven us to the brink of divorce on a few occasions,
but we are united in our revulsion at the American healthcare system and the
politicians whose meddling has shaped it.

I truly envy everyone who gets help for their mysterious or chronic illness in
the United States. We're leaving next year.

~~~
ddorian43
Can you get meds by mail or even go buy meds every x months ?

~~~
nradov
Controlled substances usually aren't available by mail (at least not legally).

------
bloopernova
That was a beautiful and sad article. Bittersweet but the sweetness was more
subtle and powerful than the bitterness. Love, I guess, is the light side of
the force, and the dark side is all that is in opposition to that.

My first wife was frustrated with my progressing back problems, and when I had
a breakdown after being fired she became more and more angry. One day, after I
got back from therapy and told her what was discussed, she said "you're not
supposed to be fixing yourself, you're supposed to be fixing our marriage!!".
Other things happened, and we divorced soon after.

My partner and I are caregivers for each other. She walks the dogs when I am
unable because of back issues, I do grocery shopping when she hasn't had any
sleep due to being up all night because of her IBS. We sign "I Love You" to
each other when we're on the phone or conference calls. We listen to podcasts
together and she rewinds parts because she was intensely focused on a game,
and I smile at her because I know that this is how her mind works, and it's
wonderful. She understands just what being introverted is, we both avoid the
grocery store and its crowds, rather than either of us being frustrated with
the other for wanting to stay at home in bed.

Neither of us is perfect, and I know we both cause each other worry and
stress. Just like in the article, sitting on the curb waiting for the other to
make it through a snowstorm, both literally and figuratively.

I hope you all find people in your lives who accept you for who you really
are, and who will be your mutual caregiver, mentally, emotionally, and
physically.

------
cyberferret
What a beautifully written (yet sad) story. I have a good friend who suffers
from Crohn's disease, but she keeps it so well hidden because I didn't realise
how bad the disease was until I read this article.

~~~
steve_adams_86
It affects people differently so she may be better off than the person in this
story, but no doubt it's a real burden to most sufferers. My good friend has
it and I've watched him struggle for fifteen years now. There are alright
years, terrible ones, and some in between. It's a terrible disease.

------
pimmen
My relationship didn’t survive my ex-wife’s sickness. She had bouts with
clinical depression and was at times not motivated to do anything. I did
everything at home and because of her illness she was easily irritated at me
and impulsive, I dreaded coming hone sometimes. We decided to split after she
recovered, we couldn’t heal the relationship.

I often think about it as my weakest moment and biggest failure.

~~~
WA
Don't beat yourself up. You pushed through this, waited for her becoming
better. There's nothing weak about realizing that it can't go forward at some
point in time, especially after she recovered (and not before).

------
erickj
In November 2012 I had just turned 30 years old and my wife and I had been
married for a bit over 2 years, but were together for over 6 by then. On the
newer side we had a 1 year old baby girl and I had just started my new job at
Google 6 months earlier.

At first I thought I had a bad stomach virus, but after 2 weeks of some very
worrying trips to the bathroom I finally saw a GP and told him my problems. He
gave me a few tests and told me that I had a bacterial infection called
Clostridium difficile (aka C. Diff.). Which was odd, because it's usually the
kind of infection that you get while in hospital, but I had been completely
healthy for my whole life. He started me on a cycle of some very potent
antibiotics: Flagyl and Vancomycin. After another week of worsening symptoms
is when things got really bad... and really scary. I couldn't go to work that
week, I still remember describing the pain like someone stabbing me in the gut
with a knife and twisting.

I had to stop eating. Drinking water was excruciating. I couldn't leave the
bed anymore, and the only movement I could make was to curl more tightly into
the fetal position. By now my fevers were regularly spiking over 102 F, and I
spent most of the night sweating myself into an exhausted few hours of sleep.
After a few days of this I finally called my GP who told me to go the ER
immediately. On my first trip to the ER I sat hunched over in a waiting room
chair for a few hours, probably as pale as a ghost. When they finally brought
me in and heard my C. Diff. diagnosis everyone put on their quarantine outfits
and stayed the fuck away from me. Oddly, they only gave me 2 bags of saline IV
and sent me back home.

After another few days at home, writhing in agony in bed, still unable to eat
anything and barely drink anything I had to go back to the ER. This time I
called my GP (who showed extreme care, and was adamant I go back to the
hospital) when I got to the ER. Luckily he had done his residency there and
knew a few of the doctors. This time my C. Diff diagnosis got me a first class
ticket to a private room and quarantine sign. I felt mildly bad about this,
because after Hurricane Sandy 1/2 of the hospitals on the east side of
Manhattan had been shut down and the wait time for a hospital bed from the
Beth Israel ER was over 24 hours for some people. (I got over feeling bad for
others pretty soon after).

I was wheeled up to my new room and asked to poop in a bucket for another C.
Diff test. Almost as fast I was hooked up to IV Flagyl and Vanco for the "big
guns". That night my fever hit 105. The next morning a doctor finally came to
see me for more than 30 seconds. This was the first time they told me the C.
Diff tests came back negative, but "it must have been a fluke" so they asked
me to poop in a bucket again. This was pretty problematic, given that I hadn't
eaten anything in almost 2 weeks at this point. This continued for a few days,
each night the fevers making wish I would just die, followed by doctors coming
in the next day and wondering what was wrong with the damn test results. No C.
Diff.

At this point the confusion of what could be wrong became an obsession. Every
nurse or doctor who came in, I asked what is it. Their answer.... "we think
it's C. Diff., it's just not showing up in our tests... you need more
antibiotics".

On the fifth day the pain became excruciating, I was lying in bed, dead still,
just trying to hold onto the edges hard enough so the pain in my finger tips
made me feel anything other than that fucking relentless twisting knife in my
gut. Finally someone in the hospital seemed to notice that I wasn't doing so
well, and they sent me to get a CT scan. A few hours later a doctor whom I had
never seen before walked into my room, he may have introduced himself, but I
was so deliriously preoccupied with my pain that I have no idea. In a monotone
voice with now questions he said "I have the results of your CT scan, we see
some micro perforations along your large bowel and believe you have fulminant
ulcerative colitis. We're moving you to the surgical ICU and may need to
perform emergency surgery to completely remove your large intestine. You'll
need an ostomy bag if that happens". The end. Please hold your questions until
after the ostomy bag.

WTF? What did that guy just say? What is "ulcerative colitis"? Did he say
"micro perforations"? Is that better than regular perforations? Just make the
pain stop please. Why did it take a week to get a CAT scan when I'm already in
the hospital? Why does my stomach still have this knife in it? These were most
of the thoughts that quickly entered my brain.

None of those questions mattered. I spent the next 4 days laying in a cube in
the surgical ICU. A very nice nurse (I sadly don't remember her name) wiped
the blood from my back side each day. At 7am and 7pm the lead surgeon followed
by his gaggle of surgical residents came to stare at me like a specimen.
Talking about me, but never to me. Never actually making eye contact, and only
glancing at me from behind their clipboards. I hated those surgeons. Never
fucking once did they speak to me. Only stared, and talked about ripping out
my intestine. I liked my intestine, but probably would have been OK with the
idea of losing it if just any one of those doctors had explained what it would
be like without it. Or why it needed to go. Or what the fuck was happening to
me.

Luckily at this point, the IV prednisone that they hooked me up to seemed to
be taking the pain away and I was able to hold a short conversation now. I was
even drinking small sips of water like a human being again.

After my time in the surgical ICU I was sent to post-OP recovery for almost 2
weeks. By this time I loved prednisone. It was my new best friend. I could eat
Jello!

When I was discharged from Beth Israel Hellhole, I mean hospital, I had been
in for over 20 days. I lost 45 lbs, I entered at nearly 180lbs and left at
almost 130lbs. I was still only on prednisone, because my major medical
insurance for Remicade hadn't cleared yet. That would still take another 3
weeks before I could start treatment on an actual drug.

Eventually I started this new wonder drug and things got better for a little
while. Unfortunately after 6 months I developed "drug induced lupus", which is
less fun than it sounds.

But in those 6 months my diagnosis changed 4 times. From Ulcerative Colitis ->
Crohns Disease -> "almost certainly" Ulcerative Colitis -> Indeterminate
Colitis (that is an actual diagnosis
[https://jcp.bmj.com/content/57/12/1233](https://jcp.bmj.com/content/57/12/1233)).

6 years later, 6 surgeries, I've lost count of the number of hospital stays
totaling almost 9 months. Failed off of 4 biologics. I eventually did lose my
large intestine. I'm on my 2nd ileostomy (they put me back together once....
that turned out to be a very bad idea, and another story for another time).

In the end, it has gotten better. I'm skinny, but I'm healthy now.... mostly.
My marriage didn't survive, partly for stress of illness but mostly for very
different reasons.

Moral of the story... find a great doctor; don't go to the closest hospital,
go to the best hospital you can find; become an expert on yourself and your
disease; speak with doctors like advisors, not oracles; don't let other people
tell you "what you should do", but listen to their stories and advice; reduce
stress; stay active.

I still don't know what I have. My diagnosis is now "maybe" Crohn's (?). But
I'm aware of it. Only my closest friends even know I have "a bag", everyone
else just tells me I'm too skinny. I can deal with that comment when I eat 3
dinner plates in front of them. I don't have similar symptoms to other
Crohnies. I can eat anything seemingly without consequence, my triggers are
almost certainly stress related. They're also (so far) completely localized to
the large intestine and lower (although I have had horrible canker sores since
childhood). Luckily none of my small intestine or upper digestive tract has
ever been noticeably affected (other than the canker sores). Overall I feel
lucky to have great doctors now, and a (usually) positive outlook, but damn...

The psychological toll is not to be discounted either. I should have sought a
group to speak with, or someone who knew first hand what this was like. I
became very angry for a long time. This didn't help keep my stress levels
down. I also find it hard to find the line of "am I lazy?" or "am I sick?",
this question is annoyingly common. I try my best not to be a "1-uper" when
someone tells me they don't feel well, but mostly I try to get them to stay
away from me since the immunosuppressants make a common cold feel like malaria
(I really don't like my coworkers who think coming into the office sick is
what a good soldier does). Overall, it is a very lonely place.

IBD sucks

edit:

+1 for r/crohnsdisease and r/ostomy (like another poster mentioned above) both
are great communities

~~~
creep
What a terrible story, though I'm surprised they ordered more than one test
for the bacterial infection.

I had a kidney infection last year around this time. I caught it early, as I
had been through it before and had once left it so late that I developed
sepsis (infection of the blood).

I went to the ER and told them I had a kidney infection. The intake nurse was
very kind and asked me relevant questions. She seemed to be inclined to
confirm my self-diagnosis: "yeah, it sounds like a kidney infection."

They got me to a bed and ordered a urine test. The urine test came back an
hour later, "100% clean, perfect urine". The doctor poked at my back for a bit
and assured me my ailment was mechanical! I assured her it was not mechanical.
"Well, your urine test is perfect, so I don't know what to tell you. If you're
still experiencing symptoms in the next couple days, just come in, but for now
try to rest and not put too much strain on your back :) "

So I went home. In the next two days I developed a fever of 102 and was in
excruciating pain, both in my head and my general abdominal area. I couldn't
walk, I couldn't even think. My family forced me to go to the ER because I was
incapable of making the decision. I genuinely thought I would die-- I thought
I had already developed sepsis and would suffer brain damage and I would die.
We went to the ER and they did another urine test. lol SURPRISE, I had a
kidney infection! They gave me the tiniest, littlest dose of morphine that
almost did nothing to help the pain, and gave me a prescription for antibiotic
pills. I insisted they send me to an outpatient facility for IV treatment.
"That's a great idea!" They said. Jesus.

Anyways, kidney infection was cured, but MY GOD, I would think the first thing
they would do is order another urine test! Apparently the tech failed the
first time and sampled it too late, which is why my urine was "pristine"
(their words). No one's urine is fucking pristine!

~~~
acct1771
Have anecdotally heard of many false negatives on a c diff test.

------
Jemm
Be right back. Getting out of bed to give my sweet heart a hug.

------
brecalynch
When you get something without asking is the best way to survive relationship,
Thanks for sharing.

------
Madmallard
removed

~~~
dan00
That's not politically incorrect, but simplistic evolutionary thinking.

