u/Effective-Band-8714

I am 29, married to another ex mo. We left Utah in 2019 and moved to a neighboring state (not far enough, honestly).

I was recently diagnosed with multiple sclerosis. For the most part, I am fine. I have some damage that may or may not heal from the most recent attack, but I am ambulatory and in good spirits. I am starting a DMT soon and my prognosis is very good despite my lesion burden. I am active, have a good diet, I don’t drink.

However, I have noticed something very weird about my in-laws and parents during this crisis.

Initially, my in-laws offered some help (we have been wanting to move even further away to an affordable area with better medical care) with our move. This would have reduced our timeline from a year to maybe 6-8 months.

We told them we would happily accept help, but a few days after I left the hospital, the conversation changed and became oriented towards how we were living our lives and what might need to change for help to be extended. The changes in question were vague- from “get rid of some of your stuff” to “receive a priesthood blessing”

Then when talking to my own parents about seeing an MS specialist (wanted to know if they’d use their frequent flyer miles to get me a flight to the midwest), the conversation somehow turned to “no smart people live in the Midwest” and that I should talk to a member of our family who is a doctor.

I was dreading this call for obvious reasons, but agreed to take it against my better judgement. It went horribly. She basically told me to prepare for the worst, that I was going to desperately need my “support system” when I “inevitably” lose the ability to care for myself (I don’t think this is guaranteed? Treatment for this disease is very good in 2026). I rode out the call without making many waves and spoke to my family after to let them know that that kind of prognosis is flat out incorrect.

What I am noticing. My husband was an RM. I know that targeting people during big life events is a thing. This feels very planned somehow. I’m not sure if my in laws are talking to my parents (all live in Utah) or if this is a subconscious behavioral thing, but it really seems like everyone is taking an “opportunity to bring these two back to the church” as opposed to offering any real support.

Is this.. common in Mormon families? I thought we had a good relationship prior to this and have just avoided church talk for many years, but I am completely shocked by the treatment I’m being shown, how coordinated it is across the board, and how specifically it seems to be targeted towards demoralizing, scaring, and making me and my husband feel helpless.

Somehow this FEELS Mormon to me in a way I cannot quite put my finger on.

My partner and I (29 F) escaped a high control religion that both our families are part of.

We made the mistake of sharing my diagnosis with these family members and now we are getting bombarded in cult recruitment tactics and I’m really frustrated by it.

We were already planning on moving further away from them (several states) because even before I was diagnosed with MS, they tend to be manipulative, controlling, and the end goal is always how to get us back into their church/cult.

A family member wanted me to talk to someone in the family who is a doctor. I regret doing this because he used his authority to just tell me how I’m probably going to get rapidly worse (not what my neuro thinks) and I’m “going to need my support network” for my “quick progression to disability”.

I am feeling so frustrated that he spoke this way to me given that I have a neuro and he isn’t it. He hasn’t seen my MRIs. My attack that led to me getting diagnosed was bad, yes, but my neuro thinks I’ll make a full recovery and believes I will respond well to DMTs.

But regardless, even if I were to progress quickly, returning to where my family lives and getting badgered in this way to rejoin their church or having them “care” for me is my nightmare.

Does anyone else have a manipulative family they need to keep distance from? I have chosen family and I know I’ll be able to make friends in the new place we are moving to. I have an amazing husband and my neuro thinks I have a good prognosis right now, but I feel like I incurred psychic damage from this conversation. He really acted like I have a terminal illness and need to start planning for the end.

I’m bummed but thinking I might need to go no contact with them all. The in laws and extended + nuclear family on my side are basically launching coordinated campaigns to try to get us to move “home” right now and the tactic seems hinged on making me afraid and helpless. I’m pretty frustrated and upset by this. Any financial help they’ve offered has also been similarly tied to actions I would have to take to please them to access the funds, I really do not need their money anyway.

Anyone live far from family or are no contact? Has it been the end of the world like my family is trying to tell me it would be? I feel like my plant right now are well thought out and I can iterate if I don’t respond well to the DMT they’re going to put me on, but I feel like the horror story my family member was spinning is also not backed up by the data available on how people respond to DMTs.

Looking for someone to make me feel better more than anything, this felt very cruel and targeted and designed to strip me of any hope I have.

The place where they live is extremely hot, the culture is toxic, it’s extremely busy and stressful and I avoid visiting both because my family stresses me out but also the place the live stresses me out too. And my partner was also dealing with a big medical event at one point before meeting me (TBI), they did this same thing to him and when he did move back - they dropped him as soon as he was back. The care evaporates once you’re “back in the fold” and they can pass you off to the church.

I’m just so tired of this.

I am 29F. I was diagnosed last Tuesday after a 3 day hospital stay because of all 4 limbs going numb and developing drop foot and a heavy limp. It felt like my right glute was completely non responsive.

I spent all of my 20s at 9,000 feet hiking 14ers, seeing alpine lakes, and pushing through bizarre, painful, limiting symptoms. I could go on these hikes, but I struggled to keep up with others my age. I would get nauseous and vomit if the hike were too long or I got too hot or the sun was too intense. These symptoms started when I was 23. They got worse as I got older. My heart rate was all over the place, frequently felt like I struggled to breathe, but I figured that was the altitude. It was hard to get medical care where I lived, so I only ever went when something was really really wrong. I regret that now.

I doubled down. It was me, I thought. I need to eat healthier, get stronger, train harder. So I did. I trained and I trained. I dialed my nutrition down even further. I ran every day in the cold snowy winters. I trained for a half marathon for two years at altitude thinking if I just stayed in zone 2, my heart rate would come down. It never came down. I figured I was just POTsie. I ran my half marathon with my HR above 180 for 3 1/2 hours.

When I ran into an issue with an activity, I’d pivot to a new one. I went from hiking, skiing, running to swimming and walking as much as I could. I thought maybe I just wasn’t naturally gifted with athleticism. I signed back up for activists I excelled at as a child, like ballet and figure skating.

Once I got back into those two, I realized how horrible my balance had become, but how could that be? How could I go from succeeding at these sports as a teenager to barely being able to balance?

Well, now I know. And who knows how long this has been chewing away at me. All 4 limbs went numb, then I developed drop foot and a limp. They did a brain MRI.

Brain: Multiple plaques including a 3mm active lesion in the right occipital lobe, a 1cm lesion in the left parietal lobe, and scattered chronic plaques in the periventricular and subcortical white matter.

Cervical Spine: Active demyelinating plaques at C3-C4 (4mm), C5 (3mm), and bilateral lesions at C5-C6.

Thoracic Spine: Lesions at T2-T3, T4-T5, and T6-T7.

In a way I was lucky, I was under active attack when they did the MRIs so I got very quick diagnosis. I’ll be starting Ocrevus soon.

I’m not sure what I want from this post other than to be seen. I’m not sure how I missed having such an active and aggressive disease. I narrowly dodged even more severe, permanent impacts from this last attack. I am grieving for my autonomic nervous system, which is heavily impacted.

Did anyone else have a similar rough and rocky start? How are you now? I feel like this is my fault for not seeking care earlier.

My poor body. I pushed it harder and harder and harder seeing all of these as personal failings I could overcome. I never once considered this would be the outcome.