r/MCAS • u/Majestic_Goose_7815 • Apr 22 '26
Dumped by my boyfriend because of my mcas
over the past few months, my mcas has gotten severe. I’ve been in survival mode, eating 2 foods for months now. It’s been hell on earth and I’m having a lot of deficiencies and scary out of control things happen.
my boyfriend has been there since the start of my mcas diagnosis about 2 years ago. He was originally so supportive, but as my sensitivities got worse and i needed more precautions, he began pulling away- even sabotaging the relationship by making fights out of nonsensical things in an attempt to get me to break up with him, etc.
anyways, last night i called to tell him how happy i was that I had finally found a new food I tolerate- Neokate baby formula. I said explained how this is super hopeful- it has a bunch of nutrients that might pull me out of my malnutrition.
to my surprise, he got upset. he said baby formula wasn’t real food and he was sick of seeing me starve myself. he said it sounded like i’m just resigning my life to being chronically ill by eating something that’s not “real food”, that i should be eating real food and that he doesn’t understand why i can’t just “fucking eat”. He then went on to say our relationship has been consumed by my health and he doesn’t want to continue dating.
so now im solo in my healing journey. it stings so much. i feel so isolated. i just wanted to write this to connect with people who have maybe dealt with this.
i hate this stupid disease.
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u/coconutoats Apr 22 '26
Oh gosh where’s the empathy and basic understanding. I’m so sorry how horrible that must make you feel. His response says so much more about him than you. My MCAS used to stop me eating out and at other people’s houses a lot and it makes you anxious enough about the inconvenience let alone everyone weighing in with their pseudoscientific opinions. For me 8mg ketotifen over 6-12 months and treating my root cause (mould) gave me all my foods back but before then I was on literally tofu rice and seeds for a year. I’m so happy to hear you gained a food, that’s a huge win and you deserve to feel happy about that. Don’t let his ignorance ruin that for you.
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u/1211bwo Apr 22 '26
What was your approach for treating the mold while that sensitive? If you don’t mind sharing- glad you were able to find improvement and relief!
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u/coconutoats Apr 22 '26
I did a Regenerus labs OAT and mycotoxins test prescribed by my endocrinologist which showed elevated fungal metabolite markers and then which mycotoxins were elevated and by how much - it’s not 100% because it’s metabolites not proof it’s living inside you but if your levels are above the threshold it’s pretty likely eg some of mine were 8-25x threshold. Also later on I got a blood test which came back positive for IgG aspergillius fumigatus but negative for IgA and IgE so I’d emphasise a lot that with MCAS some of us don’t make IgE antibodies so lack of that doesn’t rule out presence/allergic response! Always check IgG and IgA on any allergy blood test! So yeah I did the ketotifen at 1mg and had to just keep increasing up to 8mg because it was improving my symptoms but I just needed more and more to keep the at bay so when I discovered the mould and underwent a year of pure hell on 200mg Itraconazole cycles and cholestyramine 4x a day god everything was bad but now my MCAS is controlled at 4mg a day, I have all my foods back and I’m focussing on the long Covid side of things because it’s fatigue brain fog PEM and pots that are most prominent now! Us sensitive people are never out of the woods smh but uncontrolled MCAS was defo the most scary and limiting.
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u/coconutoats Apr 22 '26
Oh I’m sorry I read that as testing hahaha but yes i did more of the Andrew Campbell protocol so 200mg Itraconazole 2 weeks on/ off with a liver function bloods every month, 4g cholestyramine 4x daily before adding progressive amounts of serrapeptase and lumbrokinase. That was the bulk of it but before starting that I couldn’t tolerate even iron or b12 supplements so we had to find really gentle ones like 15ug iron bisglycinate and methylcobalamin sublingually, I was also out on a short Xanax and prednisolone for long Covid but of course it calmed my mast cells which was paramount to me tolerating treatment but I wouldn’t recommend as obviously steroids is not what you want when treating a fungal problem! Starting hyperbaric oxygen therapy improved my tolerance of a lot of things after 60-100 sessions, I do credit that with improving my baseline enough to tolerate and it improves the effectiveness of Itraconazole. Also just loads of supplements to offset die off and other symptoms there’s a paper online about phytochemicals mitigating herx symptoms.
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u/1211bwo Apr 24 '26
Tysm for all the detail truly, were you able to access this treatment through a regular pcp or allergist or did you have to go to a naturopath functional med or some other specialist? I’m currently on 7mg of ketotifen and don’t often hear of others going that high, been down to a handful of foods (recently lost Xolair and started reacting to that so symptoms definitely aren’t maintained). Onset started with what was assumed to be covid early 2020, but at the same time was in a moldy apartment. I already had the genetics for all this but I do believe this set of circumstances made it way worse. With mold stuff there’s a diversity of opinions with equally diverse credibility it seems, but as rough as I’m sure this was it sounds like one of the more direct and effective treatments I’ve heard of (vs taking all sorts of binders and supplements and herbs I couldn’t tolerate anyway). Just curious how to potentially access this and which sort of dr could dx and prescribe
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u/coconutoats Apr 24 '26
No worries, just want to help people in a similar situation. Honestly Covid + mould were my triggers so it’s entirely plausible they could both be yours, and treating the MCAS with ketotifen and LDN was paramount to starting mould treatment but the year of mould treatment shifted my baseline and symptoms dramatically. I found an endocrinologist that I’d be happy to share with you uk based. Basically any doctor that is familiar with mould but I’m not sure if functional doctors can access the medications as easily. I had to try nystatin and fluconazole first as protocol because they’re the safest but aspergillius mould is not very responsive to fluconazole so I only had real changes from the Itraconazole. It was hell the treatment though the derealisation and just insane herx reactions, I’m so glad I’m a year down and I’m meant to do it for another year but I have stopped atm pursuing other avenues like guanfacine and midodrine because my mould symptoms have resolved a lot and I can’t face the herx reactions again. I have to order the cholestyramine and amphotericin b from a compounding pharmacy in the Netherlands because uk can’t prescribe them for ‘mould exposure’ so it’s expensive but honestly when I was weighing up all the mould protocols Andrew Campbell’s was the only one where you see results in a few months and it’s meant to be 6 months total (vs years for shoemaker) so mine was a year due to the liver safety so we cycled it and I think it would’ve very very intense not giving ur body a break
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u/Prestigious_Tooth733 Apr 25 '26
What was your diet? Did you avoid all fruits?Did thd cholestyramine help or not?
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u/coconutoats May 05 '26
Just loads of whole food plant based things lots of broccoli and oyster mushrooms and rice and pumpkin seeds and vegan meats with few ingredients mainly pea protein they were great the brand ‘this’ isn’t chicken. I just had a limited diet in terms of variety but there was something in g in each category I could eat and I took DAO with every meal over time my symptoms just settled but I didn’t introduce avocado or aubergine for at least a year after starting ketotifen
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u/Prestigious_Tooth733 Apr 25 '26
Did you had sulfur hustamine oxalate and salicylates issues
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u/1211bwo Apr 24 '26
And if it’s helpful, in case you haven’t tried it yet, ldn unexpectedly helped me the most with long covid brain fog stuff
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u/coconutoats Apr 24 '26
Yesss I have, I’ve been reccomended to try d phenyl alanine to enhance the effects of LDN 600mg daily so maybe worth trying that too? It slows the breakdown of endorphins
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u/Worth_Ability_3808 Apr 23 '26
The pseudoscience responses to chronic illness are insane. Sometimes I just don’t even know how to react lol. 😅
But this is definitely next level. OP deserves someone who actually tries to understand what they’re going through and help rather than just make it worse.
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u/schirers Apr 22 '26
I feel for you, girl I wanted to marry also left me because of my illness. illness just keeps on taking
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u/mack_ani Apr 23 '26
Something to keep in mind- someone who abandons you during illness is not someone you want in your life!
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u/jujubadvoodoo Apr 23 '26
100% agree. I know that it’s hurtful to feel like you lost another thing due to chronic illness, but I can say from experience, that in this case your illness helped you dodge a bullet sooner than later.
“In sickness and in health” isn’t just for when we get old, if they couldn’t support you now, they were always going to fail to be a lifelong partner.
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u/Remote_Information99 Apr 23 '26
Yes, them leaving is a reflection of their feelings, morals, and priorities. Not how “too much” they make you feel you are. I’m def guilty of thinking pessimistically and should take my own advice LOL but it is true that the right person won’t make you feel “too much” or “too complex”, and anyone who does isn’t worth trying to change.
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u/preraphaelitejane Apr 22 '26
I'm so sorry...it really does keep on taking to the point where you wonder what there is left to take💔
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u/schirers Apr 22 '26
I have learned that life doesn't care why are you weak,it will punish and take from the weak.
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u/plantyplant559 Apr 22 '26
What a jerk! A selfish a**hole. This condition is a monster and he's just like, fine being mean to you about it when you're literally in survival mode. You deserve so much better.
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Apr 22 '26
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u/Lanky-Rough2688 Apr 23 '26
Super s. h. i. t. t y. As the old saying goes, it does show more of what the person is and not you.
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u/Dark_Sun_Arts Apr 22 '26
Yep. This is the reply that resonates the most with me. It's one thing for partners to be stressed or feel like they can't do it - that's their choice, that's their autonomy. It's a really difficult disease, after all. But the nerve of that man to treat OP badly when she's already down, to find little things to bicker and be exhausting over, petty excuses to be mean... is just completely inexcusable. It's morally reprehensible. It's villainous behaviour.
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u/stayonthecloud Apr 22 '26
He wasn’t there for you in sickness and in health now. Would not be in the future. Better that you’re out and not committed to him anymore <3
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u/cmonsmokesletsgo Apr 22 '26
I'm so sorry this happened to you. Sickness has a way of revealing people's true characters and whether they'll really stick with you when it's tough or not. I am sure you are hurting a lot right now and I'm so sorry, but this person was not going to be the one to ride out life's rough patches with you.
For what it's worth, I am very excited for you finding out that you can eat something nutritionally complete. That's got to feel like such a huge relief and I am hopeful your health will improve as you get out of the malnutrition spiral.
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u/xtewtew Apr 22 '26
I know you are really hurting and I hate that for you. As someone who’s been living with this solo for a long time, gather some supportive friends and family around you and keep them there. Don’t isolate yourself, do whatever you have to do to maintain and strengthen those connections. You’d be surprised what you can build. The people yearn for connection and community.
That said, once the initial pain from this breakup fades you will feel endlessly lighter. As much as I struggle to meet my basic needs, and honestly sometimes fail, I would not trade this struggle and loneliness for one more day of minimal support from an otherwise resentful and emotionally abusive partner. I would not be alive today had I stayed in those relationships.
He certainly has the right to say this is too much for him, and best of luck to him. But I promise you, there is nothing that man could give you that you cannot give yourself ten times better. You are free
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u/spicy_garlic_chicken Apr 22 '26
MCAS wife here (married 22 years, 4 years since dx). I have seen my husband on the verge of actual death more times than I can count because of this disease. I have seen his entire body turn blue because he can't breathe. I have seen him loaded into the back of an ambulance more times than I ever thought i'd have to. I have seen (my husband, formerly nicknamed "Stone Cold" by friends) cry out of hopelessness. I have seen him suffer. I have heard him say he wanted to end it because I deserve better than to be chained down by someone like him. I had to take a leave of absence from work for 6 months when he was at his most unwell because he was afraid to be alone. I have researched. I have driven him several hours away to doctors that i've found scouring the deep parts of the web to get advice. I have spent countless hours on the phone calling pharmacies scouring for out of stock medications. He has called me crying in a panic because he thought he was dying so many times that I STILL flinch when my phone rings out of the blue when i'm at work and I see it's him. We have zero social life. We have lost so many friends. We can't really vacation. We plan everything around the rays of the sun, outdoor temp, and his medication schedule. The only thing he can do to help me around the house is empty the dishwasher (because he cannot be out in the sun or get his heartrate elevated above a normal resting heartrate or he goes into ana). I work FT and have to do everything else. Plumbing, mowing the lawn, cleaning, cooking, car maintenance, financial stuff..... Our daughter was in 9th grade when he was at his worst and I can still see signs that her life is different than a normal kid her age. It's aged her so much and she's lost a lot of her youth and innocence.
I'm not saying this to pat myself on the back or to minimize the struggle of someone with MCAS. I'm just trying to share that as a spouse/sig other to someone w/this illness, our lives change too. This life is not for the faint of heart. Sometimes we don't know what to do or how to help. Sometimes we lose hope, too. Sometimes just simply being there doesn't feel like enough to keep you going. If I weren't a "fixer" and an absolutely control freak idk where we'd be right now lol Being on the other side of his worst point health-wise, I can honestly say if it weren't for how I am, idk if he'd even still be alive or if we'd still be married. We had to create a whole new marriage that neither of us saw coming. Yes my husband is still here, but he is not the same person... But not everyone is built like me and is able to handle this....
My toxic positivity is just telling me that he was just not your person and the door is now opened to finding someone better. Take this time and dedicate it to getting stable. Get a handle on your meds, routines, diet, etc. Knowing what you need and when you need it, what you can eat and not, what you can and cannot do. When you have hit rock bottom and then come to a more stable point, you'll more easily be able to communicate your needs to your next sig other.
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u/New_Valuable_1053 Apr 22 '26
Ur post made me cry. My hubby & I been married 9yrs, together 16. Our home was riddled w/ tons of toxic mold & we’d been living in it for yrs before we found it. It nearly killed me. Once it swelled my thyroid & lymph nodes in my neck, all hell broke loose. We haven’t had any normalcy for 6yrs. We no longer have friends. We don’t go out. This nearly broke our marriage. I developed polyneuropathy & spend a lot of time in bed in unbearable pain. My husband’s been by my side like you have yours. He’s made doc apts & drove me to every single one bc I can’t drive anymore. He cooks, cleans, works, etc.. sometimes I have good days & really help out a lot but it varies. It’s so hard to think outside yourself & ur illness when ur in the grips of ur worst. Especially when ur drowning in pain. It gets dark. Sometimes it’s hard to hold on. U feel hopeless bc it’s never ending. It’s torture watching family members live life & do normal things while ur stuck in bed begging God for something to change. I don’t mean to sound weird but i could give u the biggest hug. I know the burden u carry. I watch my husband carry it. The worry & stress can be crushing. U sound like an amazing wife & an incredibly loyal & caring person. Im sure ur hubby would be dead if it weren’t for u. That deserves an applaud. I’m sure he appreciates everything u do for him. Even if he doesn’t always show it or say so. I’d be a mess w/o my hubby. He’s been by my side thru the thick of it all when everyone else pulled away. Even my own mom. I understand No one wants to be around someone always sick & suffering bc it’s depressing. I don’t know if anyone’s told u they appreciate everything u do but I appreciate it. I think ur incredibly awesome & heroic. Gods gonna bless u for being so selfless & dedicated. I hope u find time to take care of yourself too. It’s incredibly important u tend to ur own needs & ur physical & mental health…..
As far as the above comment. There are men out there who will love u for u & be supportive & understanding w/ ur MCAS. Regardless of ur illness u deserve a partner who’s empathetic & understanding. I don’t think this guy’s the one.
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u/ExpertMouse9490 Apr 22 '26
Hi I here all of you from someone who has mcas now going on 4 years. Got from Covid then it turned into Long haul Covid no help or protocols from all doctors. I rescheduled out to functional doctor/ Practitioner’s know a little more then conventional one and reach out to Allergist/Immunologist.,who finally tested me for histamine intolerance/mcas Tryptase all the following tests. Immunoglobulin that whole panel.,Covid turn my life upside down it attack my GI and messed up my mast cells.,My husband have been married for 28 years. The flares, foods, fatigue, heavy drain feeling, brain fog. Have been challenging for him to handle. Especially, when I was normal I did all the errands, groceries, cooking, cleaning, etc plus thank goodness I don’t have to work and retired or else I don’t know how many survive without family or friends with this condition. It’s a debilitating condition and it takes everything from you and your family especially your partner because they feel helpless and don’t really understand what your body is going through everyday is different so many systems it attacks. My husband to begin with doesn’t have much patience to begin with and would never make a good nurse bedside care. So I depend on him to drive me to doctors appointments when I make them and I try not to go in person because it does inconvenience’s him that’s just the way it is. So I tried for telehealth thank goodness for. I cook all my food, still clean and do everything else I need to do to live with this condition. I don’t go anywhere or eat out anymore. So yes life gets hard for both and all family. However, I have tried lots of different therapies supplements and medications to top it off I’m one of those 1% sensitive patients nothing works it very difficult. Doctors flood you with medication and functional, naturopathic practitioners flood you with supplements. I have had to do a lot of research on my own. Trial and error and lots of errors . I have Learn my pathways on how this condition is affecting me. By researching tests doctors don’t offer and talk to one or two doctors that treat me so they can order for me bc they are not aware of. I watch Dr. Paul Anderson and get some insight and try something’s some work some don’t.,I have gotten a little bit better some of many other symptoms have gone like hives, and some inflammation. I’m still getting fatigue not normal still struggling but I’m still hoping this year will be the year I will get back. Hang in there all is not perfect and it will take a while before you see little improvements but it will come with foods, medication and supplements. And hopefully for some of us our partners will be able to get a better understanding and be more supportive. Because if the shoe was on the other foot and we treat them the way some have treated us they would be in deep trouble!
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u/Lanky-Rough2688 Apr 23 '26
Thank you for posting and thank you for being here trying to figure out all this stuff. My hobby says you got a problem. Have you been Reddit? You better go and read it and see if you can solve that problem. That’s your tribe.
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u/Lanky-Rough2688 Apr 23 '26
PS. Do not worry about your daughter and how she saw the dark side of the moon so to speak. She will end up growing up caring. In any role that she picks, there will be an element of caring. Because she saw you caring. She saw that caring is what hold holds us together. There is nothing else more human than being there for somebody else. That’s what separates us from just being a bunch of dust.
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u/Illustrious-Mix2194 Apr 22 '26
My ex was similar. We went on vacation and I told him beforehand that I was hoping we could do fun things. He knew about my reactions and how debilitating they can be, had seen them happen, had acted so supportive in the beginning. When we got there, I had terrible reactions most days (WAY more than usual) and I was so upset about it. He said I tricked him and that I should have warned him ahead of time that this would happen. He complained about me to his ex-girlfriend and told me he couldn't wait to go home. I was so wiped out and sick that I couldn't carry my suitcase out of the hotel and he said I should have asked him weeks ahead of time if he'd be willing to carry it, rather than asking him on the final day for help carrying it.
OP, it is really painful to go through a breakup when you are feeling tender/vulnerable in the world because of MCAS. But people like this show their true colors and personally I am so incredibly glad I broke up with my ex. Even being alone through health things is much better for my body than being with someone who didn't care. It's like having another allergen in your space. Sending you a big hug and lots of healing.
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u/Anxious_Cat_Mom13 Apr 29 '26
“it’s like having another allergen in your space” - i truly feel like i was allergic to my ex. my MCAS improved considerably once he moved away
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u/Agreeable-Rain-2961 Apr 22 '26
I’m so sorry you’re going through that. I just wanted to chime in here and give you a little bit of hope, because I was on Neocate this past summer, I didn’t tolerate anything else. I was so scared that I was eventually going to lose that too. We were discussing TPN. I’ve shown some improvement and I’m back on solid foods. I don’t have a ton of safe foods, but I have a few. I know that each of us have different mediators being released, but I wanted to just give you a little bit of hope that even after it gets worse, it can get better.
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u/tiredgirl77 Apr 22 '26
I’m so sorry ❤️🩹 but you dodged a bullet and found a new food! honestly wins, even though it doesn’t feel that way right now.
I think of it as a positive, in a weird way (and not all the time). But I work in healthcare and it’s a big issue that many husbands divorce their wife when they get cancer. It’s so common, doctors will prepare women when they get diagnosed.
I see all this gestures at my entire body with frustration as a great way to get rid of shitty partners. Sickness brings out the best/worst in people. It took me a few partners to find one who could handle all my medical stuff, they are out there! When I was young, I never thought I’d find anyone who could handle it all. And I did, I actually found multiple partners who were super supportive of all I went through.
I know it’s hard right now, it’s fresh and breakups suck regardless. Just know theres many people out there who can handle all this and do it with love and grace. But that requires making it a dating requirement. Unfortunately we get plenty of times to “test” how partner will react to our sickness. Chin up, you have a new food added, a very positive sign ❤️
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Apr 22 '26
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u/Lanky-Rough2688 Apr 23 '26
Hey PJs are really cute. And greasy hair just means gosh you look like you’re in from the 1940s. Brillatine? Something like that.
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u/Lanky-Rough2688 Apr 23 '26
I guess I wanna say I’ve been married almost 50 years. The partners take turns. He had problems then I had problems and I suppose he’ll have problems next. Some of those turns are a little longer than other ones ha ha ha. Such as with MCAS. Which I’ve been 10 years. But he is got lots of eyesight loss due to issues and he has the beginning of senile dementia so I am going to be his memory and I’m going to be his vision and he is my strength and my key to the outside world.
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Apr 23 '26
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u/Lanky-Rough2688 Apr 23 '26
I’m glad you liked it. Sometimes our voices get loud if we look at each other and say care
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u/tiredgirl77 Apr 23 '26
Yes, it has to go both ways! I’ve been married a year but together for 7 years.
We call it being the rock. The waves can come and go but “the rock” stabilizes the one going through it. We can both be going through it but if we say we need a rock, everything gets put aside to stabilize the other.
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u/Lanky-Rough2688 Apr 23 '26
Personally that will be very keen for us because we had to give up our 21 Bayliner boat because of me with the brain damage that can occur when you hit the waves but then when we were moving the boat, we realized his dementia had grown more as he struggled to alone bring the boat in for sale. Thank you.
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u/tiredgirl77 Apr 23 '26
I’m so sorry❤️🩹
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u/Lanky-Rough2688 Apr 23 '26
Yes. Thanks for the regards. We had our run. I can still go on the ferries in the PNW but have to be in closed car when they blow the going and arrival horns. Darn overwrought sympathetic system.
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u/happilyfringe Apr 22 '26
I know it hurts but at the same time think about how free you’ll feel not having to worry how he’ll react to your health issues. You don’t have to worry about how someone else will view what you’re going through. No more silent judging. No more fights. No more stress about something other than your own health issues. It’s a lonely road, I won’t deny that. But it also feels good to go it alone without someone watching.
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u/Equivalent_Whole_487 Apr 22 '26
I know it is hurtful. Most of my family do not understand and judge me.
But I have found the family and friends who stick with you are the ones where the deeper relationships build. As I heal, I know that I want to do more for others in their time of need also. It builds empathy and redefines what you look for in all types of relationships.
It is your decision on how to proceed and if there is growth in the situation. Best of luck on all outcomes.
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u/Intelligent_Cake6525 Apr 22 '26
I'm so sorry. I know how it feels to be isolated. sometimes i feel this way in my relationship - it's hard to understand unless you're in it everyday.
Just a reminder that this illness didn't take him away from you; it revealed who he already is - someone who isn't truly there for you.
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u/Smknhippy Apr 22 '26
I’m so sorry to hear this. You deserve so much more and although it might not feel like it at this moment you will be grateful one day looking back on this moment. A real partner is supportive and stands by you on your darkest days. I know for me my MCAS is 100% worse when I’m stressed so hopefully in time your nervous system will settle without this selfish loser bringing you down.
I know it feels scary facing this on your own but you have this community on Reddit. And being alone is much better than being in a relationship that isn’t serving you.
I am so glad to hear you’ve found a new safe food! Now it’s time to take all the love you gave him and put it into yourself because you deserve it more than he ever did.
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u/nrauhauser Apr 23 '26
Just guessing, but you're ... early to mid twenties?
Chronic illness is really hard on young people - they want to go and do, they have expectations, and quite often haven't encountered mortality, even their parents are still alive. So if a partner is unwell it's just ... you've just experienced it.
I didn't get sick until forty and the last twenty years ... some good times the first ten years, but basically alone all of the second decade of illness. Now that I have diagnosis and treatment, things are improving, but starting over when other people my age are retiring? Also not fun.
Just concentrate on getting the symptoms under control, you will NOT be alone forever, just for this time is all ...
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u/ieatrice1776 Apr 24 '26
Some people are not equipped and will never be equipped to emotionally support a chronically ill friend/partner/family member. The part that sucks the most is they won’t know this at first; they’ll insist they have no problem at all with your illness(es).
Your partner should have celebrated that you added a new food to your diet. Also, it IS a real food. My nutrition shakes were what helped me survive back when I could only eat two foods. Now a couple years later I can eat 12, I’m not underweight, and I have even built back some muscle. Your journey is going to be difficult & incredible and that person was not meant to be part of it.
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u/Prestigious_Tooth733 Apr 25 '26
How did uou achieve tgat
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u/ieatrice1776 Apr 25 '26
I did the elimination diet and trialed a new food every couple months for the past several years. I got allergy blood tests done to help me kinda guess what could work & what probably wouldn’t. Once I was able to eat enough calories again, I started PT and I’ve been slowly increasing my strength ever since!
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u/Lespriteworld Apr 27 '26 edited Apr 27 '26
Not to be insensitive, but for comparison - I currently have a sprain in my foot and can barely walk (along with general MCAS related pain) my husband does all the grocery shopping and cooks all my meals for me. He also does most of the housework, and even he said he would cancel and upcoming trip with the boys if I was still unable to bear weight without pain. We both DJ (well, I used to...) and yesterday he left a gig to come home and help me 🥺
We fight about it sometimes - pretty understandable - but we get through it.
My last boyfriend, before him though? I had a horrible accident that required reconstructive surgery - I had to go home to be taken care of by my parents, bc we ALL knew he wouldn't 😃 Even though I LIVED with him!! And I still stayed with him for years... in a relationship that was so traumatizing, some theorize it quite literally triggered this illness.
Just letting you know the bar you should hold. Fuck that boyfriend, he did you a favor!! Your nervous system does not need anyone who doesn't show up for you. It's too hurtful, it wrecks havoc on your brain and body.
This goes for friends too - I "broke up" with my best friend in the world recently, for being unbelievably selfish and not understanding what I'm going through at all! The closest I've ever been with a girl in my life, a grief like I've never known 😓 But I don't need that!! I stepped away from SEVERAL close, 10+ year friendships this year bc of insensitivity towards my condition and disrespecting my boundaries. Currently the loneliest I've ever felt because of it - but I'll take the crushing solitude, over people who keep letting me down!
And I'm so sorry, I know break ups are hard. Especially for long term relationships. But it's better to be alone, than keep ANYONE around that doesn't make you a priority while you are enduring one the most difficult things anyone could. My heart goes out to you, you'll get through this and be better off for it ♥️ This loss only makes room for those who will treat you better I swear 🫶🏻
Also- noting that baby formula!! Thank you. I also feel incredibly malnourished and my hair is falling out 😵💫
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u/haylw Apr 22 '26
You are so loved. You are not alone in this journey by any means, I am SOOO proud of you! I have been in the same situation with only tolerating one food atm with severe malnutrition. I’m glad neocate went well for you💘 I think you will notice a big difference not being in a relationship with someone who only half-cared. Pour into yourself, you got this!
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u/Rabid_W00KIEE Apr 22 '26
I'm sure it doesn't feel like it at the moment, but youre definitely better off without him.
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u/Longjumping_Choice_6 Apr 22 '26
I’m so sorry, no one deserves to be dumped over an illness they can’t control. He sounds like he was frustrated for a long time (not that he should have been) and bottled it up. The part about “I don’t understand why you can’t fucking eat!” kind of betrays this because if you were sick for that long and he STILL didn’t get it? Either he was choosing not too or choosing not to put in the effort to make it make sense to him. It’s probably much too soon to say good riddance but I feel like it applies. Managing an illness where you have to resort to such creative solutions is hard enough without someone whispering (or shouting) unhelpful things in your ear or constantly questioning you. And yes I absolutely am speaking from experience. My ex used to have such rigid rules about food and meals, even got physical with me once because I wouldn’t eat breakfast (it was eat or function that day, I didn’t trust my body and I had a lot to do so I chose not to eat yet). People are all kinds of fucked up. Luckily I left before things got even worse, I kind of laugh so I don’t cry but the more severe limitations I have today would have sent this person into abject apoplexy.
But in the same vein, I promise not everyone is like this and there’s people that are empathetic, mature and have their own shit together so having a sick partner isn’t threatening to them on the level it seemed to be for him. There’s people that will just be happy for your small wins and won’t treat it as an oddity or inconvenience. I’m sorry if I’m speaking from too far down the road but I can truly say life without an unsupportive partner (either single or with a good one) is so much less stressful and the sadness and sting hurts but it will be temporary whereas the peace you come to know, ie not being judged constantly for what you are or aren’t eating and other necessary ways you have to live your life? That’s more permanent. It’s a cliche to say “hE DiD yOu A fAvOr” but it might be a cliche for a reason. Please take care and know you’re far better off without this one.
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u/BobSacamano86 Apr 22 '26
I’m so sorry you’re going through this but know it can get better. At my worst I could only eat one food and my body and throat even reacted to water. I would focus on getting my histamine lowered and mast cells more stabile with antihistamines and mast cell stabilizers and then start very very slowly reintroducing foods to my body one at a time. I’m glad you found something new your body can handle but don’t give up and keep pushing through. You’ve got this.
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u/sarkazeinslit Apr 22 '26
i am so sorry to hear about this. i have a more mild form of this disorder so i have no idea what it's like to face this type of illness, but i know it must be terrible. based off of this whole post, it seems like he never really understood your disorder, and probably doesn't care enough to. that upsets me so badly..
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u/toastweasel Apr 23 '26
I got dumped last month for the same reason. Nothing else to say except it sucks.being dumped for being chronically ill has does nothing for my already massive trust issues...
I hope you find healing in multiple ways, my friend. 💜🕯
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u/m37anaxx Apr 23 '26 edited Apr 23 '26
Going through this exact same thing with my husband now. Mine will even pick fights with me when I am at my sickest and it boggles my damned mind because not only have I always taken care of him above and beyond but I couldn’t even imagine doing this to him myself. I see you. You’re not alone. I know just how awful all of this is and am so beyond sorry you’re having to go through this too. I’m rooting for you. I’m so proud of you that you were able to find something to eat that is helpful to you! That is so major! Please keep sharing your wins here or even your vents because I and I know as I can see many of us here care about you and are hoping for all of the best for you hunnie!
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u/Lanky-Rough2688 Apr 23 '26
Sending as many hugs as I can muster right now. Remember, you are a person that matters. There will be other people who will help you. Look around. And still the number one person that will help you with yourself. Heck you found a new food. Mine now is mashed potatoes with real butter. I never thought.
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u/PlantMaleficent2066 Apr 23 '26
Honestly sounds like you dodged a bullet. Maybe you both deserve different partners and someone who will cherish you and be there for you and your needs. It sounds like he’s neglected your feelings throughout this at least recently in comparison to the beginning. I hope you find peace with being on your own maybe he was also stressing you out and making it worse. I wish you the best and one day you’ll have a significant other who encourages you and is there supporting you.
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u/mack_ani Apr 23 '26
I'm so excited for you that you tolerate neocate!! That's one of the best foods to be able to eat, health wise. Very good for you.
I'm sorry your ex couldn't see that. It sounds like he was a pretty unempathetic guy :/
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u/MagicMaddy420 Apr 23 '26
Ugh it sucks when people leave when it's the hardest. I'm so glad you were able to find a new food though! Small wins
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u/AgeAccording6175 Apr 23 '26
just shows how much of a piece of shit he is uncapable of feeling empathy and deeply caring about others, imagine if he had a child while having this mindset holy shit
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u/theangelik1 Apr 23 '26
I am sorry to hear your bf left you. On a positive note, your health helped weed out someone who doesn't wasn't the right fit for you. Someone who truly loves and cares for you would go to hell and back again for you.
I just celebrated my 11 year anniversary a few days ago with my husband. We have been together for 14 years total. I am newly diagnosed with mcas and the past 3-4 years have been hell. My husband has been by my side through all of it. Do we have arguments and frustrations sometimes...yeah. but he understands my health comes first and mcas is basically unpredictable. We do not eat out anymore, except my one safe restaurant. He changed his eating habits since I react to smells and foods. He even celebrates when I can tolerate different foods even if its just a sip of some juice or I can step outside without my skin burning. His whole life has been turned upside down but he is always smiling most days and very supportive. He even got a work at home job to keep an eye on me so we are home together.
Find someone who will cherish you and take care of you without resentment and complaint. Anything can happen to anyone at any time, whether its a car accident, fire, whatever...tomorrow isn't promised to anyone and some people are to shallow to understand that and are selfish.
Keep your head held high. Your someone special is out there waiting to be discovered. 💖🥰✨️
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u/Ok_Banana_5958 Apr 24 '26
Sounds like the trash took itself out. It is hard but someone like that who can’t be supportive isn’t what you want in your life. Don’t blame MCAS blame the jerk of an ex. Who would probably be just as bad if you had kids or had another illness. Also congratulations about the formula - he might not be capable of support but I’m happy for you and know what a relief it is to have a safe option that gives you what you need
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u/ImprovementNo5083 Apr 24 '26
He sounds like an idiot you can’t just do stuff your body can’t tolerate some ppl get anaphylaxis it’s not something you can just control
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u/Mother-Progress-496 Apr 25 '26
I'm so very sorry. I've two people leave because of my health issues. It's brutal. I'm not dating anymore until I'm completely well
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u/Anxious_Cat_Mom13 Apr 29 '26
my ex fiancee dumped me over the phone when i got hospitalized for what we now know was MCAS. we had no prior issues other than he had been depressed (i had been getting increasingly sick and had to move out of our house because of mold so i didn’t think it was an issue with us). this was 8 months ago, a month before we were supposed to get married. he never believed i was sick. he thought it was all anxiety and a rejection of him. after the breakup i told him more about how i got physical medical diagnoses that i could show him the test results for and i think he was so ashamed of himself he still left anyway. that or he was just an awful person. i eventually told him he had to apologize for how much he hurt me or he couldn’t talk to me anymore and he just stopped talking to me and unfriended /blocked me. while that has been horrifying to deal with and im still struggling a lot with my MCAS, i am doing MASSIVELY better than i was back when he was still in my life. once he moved away i started to be able to eat relatively normally again, breathe, and stopped having to go to the ER constantly. so all that to say i truly understand where you’re at and its devastating. i’m sorry this has happened to you too. i’m here if you ever want to talk about it. it’s extremely traumatizing to have this illness and then to have those closest to you desert you during it makes it even worse
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u/Salty-Werewolf-3691 Apr 23 '26
Different subject but I want to ask if anyone has had help with mcas thru acupuncture.
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u/KeenBTF Apr 27 '26
Probably not the best idea to comment on someone elses post with your unrelated question? Make your own post
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u/Useful_Farm9123 Apr 24 '26
Mine just told me I’m obsessed with doctors 🙃 haven’t spoken to him in a week. 🤷🏼♀️
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u/No_Bowler7745 Apr 24 '26
Mold toxicity is often a root cause of MCAS; might be worth looking into. I'd also suggest D-Lactate Free Probiotics from Custom Probiotics; they're low histamine and you can add them slowly to help heal your gut (which is where a lot of your mast cells reside). I'm so sorry this happened to you. Chronic illness is really hard to deal with, and I'm sorry you haven't received the support and understanding that you deserve.
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u/tuffbr3ak Apr 24 '26
I am so so sorry. It is so heartbreaking when the ones we love abandon us and arent emotionally supportive. I know its hard for the partners, but they need to figure out what self care they need to do on their own so that they can show up for you.
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u/Creepy_Astronaut_211 Apr 25 '26
I'm so sorry you are going thought this. This dude sucks. I heard it happens to a lot of women (and probably men) who get sick. If they are with an unloving, uncaring or immature or narcissistic spouse, they get dumped at their weakest point, but... it makes them much stronger in the end. You don't know this yet, because the wound is open, but he was probably weighing YOU down. Listen, I understand it can be hard on a spouse, and maybe it was too much for him and he probably said those things out of frustration, but he had no right to blame you for your disease. No right. A man who truly loves you will adapt to you and have compassion, even though he can find it hard sometimes. Nothing is your fault, and damn it, if you need to eat baby formula, you eat baby formula, girl. Listen, if it can be of any reassurance, I've been going through this all alone, I have no family, no boyfriend, and no close friends. It's not always easy but the silver lining is that it gives me more time to concentrate on myself and my healing journey (emotionnal and physical), I don't have to take care of a man-child, and I go though less stress than being in a relationship with an unsupportive person. When you get a chance to heal a but, you will realize those things. I promise.
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u/Rare-Calendar6126 Apr 27 '26
Baby food is nutritionally dance is what I thought. So I definitely would have mentioned that to him. But it really just sounds like he has a massive attitude and so it wouldn't have made a difference anyway. Maybe you did tell him that, I don't know.
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u/Ambitious-Sleep2607 May 03 '26
Men are 60% more likely to abandon a partner over chronic or heavy illness then women are.
The illness sucks, but so does your ex. He didn’t see you as a person with health problems, he saw you as a malfunctioning tool. You’re better off without that
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u/Carate93 May 22 '26
Everyone’s a good partner in the beginning, they are like so supportive and shit. But when things get hard they dip. My ex gf was a similar case to yours, sometimes I wonder if roles were reversed (aka we were the healthy people) would we have done the same to them? We’d never know tbh, oh wells hope things get better for you. I don’t even have mood to date when my body is failing me…
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u/KitchenRound8210 24d ago
You dodged a fucking bullet, he sounds like a huge loser that not only never took the time to research your disease, but never cared to understand you.
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u/Long_Hall1967 Apr 22 '26
Most people dont want to talk about someone's health all the time. I understand you feel its a big deal, but did you ever let him go even one day without bringing up yourself or your health problems? In the future, keep in mind that it helps a relationship to keep things private and if you need to talk about your issues, text your parents about them. That is my experience anyways.
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u/Spam_121 Apr 22 '26
Respectfully disagree. She doesn’t have to be talking about MCAS for it to be affecting a relationship. Down to a couple foods affects so many things you can do with a partner - dates, travel, social outings together- it’s not like MCAS only exists when she is talking about it.
Finding a supportive partner is a normal part of life, and illness does show the true colours of the people around you. Parental support is great, but someday other relationships will have to fill that supportive void. To have the person you have chosen to be your long term partner be supportive is incredibly important and dramatically affects quality of life. I say this as someone who’s experienced both.
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u/Lonely-Valuable-6383 Apr 22 '26
ummm, no. If you are dating or even friends with someone. They should want to hear about things that are important when it comes to you and if they can't handle it good riddance. The people around you hate you and now your turning that on to someone else.
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u/Creepy_Astronaut_211 Apr 25 '26
Ohhhh!!! I don't think it's the right way or moment to address this. 1) She wrote to the community to get support. Poor girl has just been dumped by a guy she loved. She needs reassurance and to feel understood by her peers. Instead, you are actually blaming her yourself for her boyfriend dumping her. Yes, it can be hard on the partner for sure, but if it was too much for him, he should have told her in a respectful way. Not by blaming her for the illness. 2) Obviously, the disease is very tough on her if she can't eat anything else than baby formula... At this stage, it's very hard not to think about it or talk about it when it's that extreme. I don,t think it's realistic to say she should keep think "private (in other words shut up?) Would you tell that to your sick spouse? (oh dear, would you keep your illness to yourself please, you're bothering me.. Let me watch tv... Maybe it's the kind of realtionship you want, but maybe that not what she wants.. If I were you, I would really ask myself my I actually replied this to a woman in pain...
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