How to help a 'friend' with Lupus?
I have recently made 'friends' with a 57 yo woman who has a lot of co-morbid health problems.
Along with severe depression and anxiety, she has terrible scoliosis, which was not treated appropriately at the right stage of her life, she has what can only be referred to as a "hunchback". Went from being 5'10" to 5'3" in 10 years.
She also has lupus, which I don't really understand much about. She has chronic cellulitis in her legs and feet, pains everywhere and anywhere in her body. Last night she called me in hysterics b/c she was bleeding from the rectum (I think, she uses 'baby phrases' to describe her body--called it her 'poo hole', so I guessed she meant rectum..anyway, she was beyond hysterical and trying to describe this to me with this weird terminology. I finally asked her to use the APPROPRIATE words, as I couldn't figure out WHAT was going on.
She also said she had severe abdominal pain, shortness of breath, swollen legs and feet and could not walk.
My only 'help' to her was to talk her off the ledge, so to speak and tell her she needed to go to the ER. She refused. Said she was 'too hideous' for a dr to look at her 'poo hole'.
Well--my SIL is a GI doc and I called him and he said "She needs to go to the ER. I can't help her and you can't either."
Knowing very little about lupus--is all of this related to the lupus? She seems to have no handle on any knowledge of how to treat this or how to act. Are all of these weird symptoms part of lupus? She has never had a day as long as I have known her where she was happy, felt OK or was able to live any kind of fulfilling life. Her family are sick of her being sick all the time. I feel for them..b/c a little of her takes a LOT out of you.
So--any answers to how/why/what the lupus is doing to her would be helpful. She's an exhausting 'friend'--really not a friend, but an acquaintance and she has been leaning kind of hard on me.
On top of the crippling fear of Drs and needles and hospitals, she frequently gets "fired" from Drs practices for not showing up for appts. I would love to have some information that is really helpful to her. She is an adult but functions about as a pre-teen would, in terms of health.
Thanks in advance. She's looking down the barrel of having to move to a care facility b/c she cannot care for herself and her husband is done with her and her hysterics.
I'm going to put this under "Burnout' b/c I AM burned out by her, but I think I'll see more support if I do that. There isn't a choice of 'autoimmune disorders'.
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Lupus aside, she sounds very mentally ill.
Can use Covid to your advantage here… “My doctor doesn’t want me to be around people for a few weeks” or “It’s not safe for me to see you for awhile, due to your Lupus. You should probably call 911 next time you feel bad.”
Maybe call APS and they can at least get her on their radar?
Oh, without question, I believe that I cannot change anyone, this 'friend' included.
After spending a couple of horrible, dramatic hours with her almost 10 days ago--and a final text wishing her the best, I ignored her. She seems to need to be miserable, and although I was sick to death with COVID, she never once asked if I was OK, just went on and on, ramping up the hysterics. Not once did she even ask if I were OK. Quite telling.
She did finally go to 2 of her drs., and they want to do an endoscopy & colonoscopy both b/c of the gut issues. She refused. She also refused to do a round of IV antibiotics for the cellulitis that plaques her. (She's terrified of needles). So she goes to dr after dr and doesn't comply at all.
This, she texted me as I would not answer her calls. And I don't plan to. I felt like anything I said just blew off into the winds. She won't make a step to better her own life and I won't either. I have my own life. I do care about her, but in more of a 'well, that's sad for her' kind of way.
I guess I find it amazing and appalling that people refuse to care for themselves---and drag other people into their messes.
As for me? I'm done with her.
Somebody like that (and I've known a few) will just suck the life out of you. Just try and ignore any future contact with this 'friend' for your own well-being.
As others have said, there's plenty of information on lupus available to her. I'd just skip offering that.
There are some people who simply have no interest in knowing or understanding their ailments. My in-laws are like that, and they largely ignore any issues until they get taken down by them. That attitude killed my father-in-law when he ignored knee problems, found work-arounds for the pain such as walking downstairs backward, fell while walking downstairs backward, hit his head on the concrete floor of the garage, ignored that, had a brain bleed and died. There was nothing anyone could do to convince him to even take ibuprofen for the damn knee pain, so he pretty well decided his own fate. So be it.
You can't care about that woman's health more than she does, and THAT'S what you should tell her.
There is nothing wrong telling her that you can not help her, and if she does not follow up on the suggestions you do make there is little else you can do.
She should talk to her primary physician. If she has a Rheumatologist she should consult with that doctor. If she does not have one she should see one.
Lupus is an Autoimmune disease and can effect many different organs and systems.
Get yourself and hubby well.
We can only give to others out of an abundance of something to give.
"Treatment consists of immunosuppressants
While there's no cure for lupus, current treatments focus on improving quality of life through controlling symptoms and minimizing flare-ups. This begins with lifestyle modifications, including sun protection and diet. Further disease management includes medications, such as anti-inflammatories and steroids."
At 72 my suggestion is to back away. Remember my new mantra
"I am here to help people find a way, not be the way"
You can only help those people who are willing to help themselves. From what you've written, she is not willing to help herself and you cannot do it for her. If she is not seeing a doctor and taking the meds prescribed for her, she is probably dying. I would call APS and have them do a "well check". Tell them the woman needs medical care and you don't think she is competent to make the decision to refuse it. This is all you can do, really. APS has the power to force her.
I never heard back from "M", even after an entire evening spent on the phone with her, trying to calm her down--I 'almost' went out to her house, but I am so glad I didn't--I came down with covid yesterday, 12 hours after DH came down with it. We're triple vaxxed, the both of us, and I am sick, but not miserably so. Will take the day off as much as possible.
I've done some reading and I understand better that she should be dealing with the symptoms and following drs orders, but she does not. I was helping her clean out her filthy bedroom--and she let me go through her bills, b/c she was so overwhelmed by them.
I found dunning notices from several hospitals, packets of post-hospital stay instructions and tons of prescriptions she didn't fill. Who gets a packet of info from the ER and just shoves it all in a garbage bag?
In truth, she cannot run her own life and probably should move to a long term care facility. I won't suggest it, she's bite my head off.
She'll text or call when she has another crisis. I'm going to take care of me.
I've told her many times that her friends cannot help her if she refuses to help herself.
The NHS is great for bluffers' guides to conditions: https://www.nhs.uk/conditions/lupus/
If she's bleeding p.r. she needs medical attention stat (since we're getting technical!) - she might have been put on slow release NSAIDs or something.
Has she called her PCP to report these new symptoms?
Please tell her that you don't go to the ER to be treated "nicely", i.e., given a comfortable bed and attention. You go to the ER when you think you might have something life threatening, like heart failure--which she may well have.
The disorders my husband, SIL and daughter unfortunately have no sort of preventative medication. They can really only treat the symptoms.
My son has Hashimoto's and will likely end up (very soon) on thyroid medication.
As far as her other health issues, it does seem to me that if you have one autoimmune, you might very well suffer from multiple autoimmunes, unfortunately.
She's probably best seeing an endocrinologist.
Shotness of breath, fluid buildup and abdominal pain make me think that perhaps she's having cardiac issues.
Rectal bleeding could be hemmeroids or something more serious, but unless there is ALOT of blood, that's not the emergency.
Hypochondriacs get terrible medical care, because it's so hard to tell the real emergencies from the imagined ones
Everything is an '11' in her book. Pain is impossible to really dx.
Just trying to understand WHAT is causing her so much pain. It very likely could be entirely mental.
She's not stupid, but does make really poor decisions and is very self centered. Perhaps I will read more about this 'illness'--as it is one..and see if I can be more educated about it. She's really leaning in to me, and thinks because a couple of my kids are drs, that I know everything. I know some things. But I'm hesitant to say too much b/c she takes my words as gospel truth..I need to know more about the disease. If Lupus is even considered a disease or a collection of symptoms. IDK
Do you think she isn't capable of understanding and/or managing her diagnosis? Or do you suspect she's being obdurate about it?