There’s a support group on Facebook which I find really helpful! It’s so hard to find people with the same condition
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Hi guys, I'm new here, I have a handful of things with the worst being POTS and Gastroparesis.
I'm really struggling with something and didn't know where else to post it. Facebook seemed too personal ( even in support groups), I didn't want other sufferers to take advantage of or mock this question.
But to anyone dealing with dating, or at the very least, *wanting* to, with chronic illness(es): how are you doing it? How do you find the esteem to try to get out there? And when do you usually tell any prospective interest that you're unwell? ( Also, do you share that it's pretty bad, or do you act like you're just "struggling with health right now"... and kind of hope that it sounds less bad??).
*I* know who I am and I know I love myself, and I know what I've been through. But it's so hard feeling like someone will think you're lazy, or worthless. Me divorcing a year go definitely didn't help ( it ended for a variety of reasons, and my health and anxiety were only a portion) though it does make it much heavier on my mind than before.
Tonight I was at my Mom's and she noticed I was in a better mood ( I had been out in the fall breeze) but she asked if I had started talking to somebody. I told her no, and said " who would want to deal with this right now" and she said " well good, because you're a whole mess right now and not in any place to be doing that". And it's really upsetting because I feel like I have the right and deserve to find someone as much as anyone else, and if we're to be waiting till I'm " not a mess", we're gonna be waiting till the grave! lol. I mean, really..
How do you get through feeling like you're not worthy of looking for anything because you would almost feel like you're deceiving someone to put yourself out there, and then your life is riddled with problems that they'll have to share in if they want to join you?
I'm totally fine if someone decides to peace out after they find out, I get it for sure. I'm just so unsure of how to navigate this and I've been single for 2 years now, purposely. But I'm really feeling like I'd like to look or put myself out there again, but as I said I feel it's unfair to another person.
If anyone has any videos or books that have been helpful with this I'd really appreciate it. Also thanks so much for letting me vent
I'm really struggling with something and didn't know where else to post it. Facebook seemed too personal ( even in support groups), I didn't want other sufferers to take advantage of or mock this question.
But to anyone dealing with dating, or at the very least, *wanting* to, with chronic illness(es): how are you doing it? How do you find the esteem to try to get out there? And when do you usually tell any prospective interest that you're unwell? ( Also, do you share that it's pretty bad, or do you act like you're just "struggling with health right now"... and kind of hope that it sounds less bad??).
*I* know who I am and I know I love myself, and I know what I've been through. But it's so hard feeling like someone will think you're lazy, or worthless. Me divorcing a year go definitely didn't help ( it ended for a variety of reasons, and my health and anxiety were only a portion) though it does make it much heavier on my mind than before.
Tonight I was at my Mom's and she noticed I was in a better mood ( I had been out in the fall breeze) but she asked if I had started talking to somebody. I told her no, and said " who would want to deal with this right now" and she said " well good, because you're a whole mess right now and not in any place to be doing that". And it's really upsetting because I feel like I have the right and deserve to find someone as much as anyone else, and if we're to be waiting till I'm " not a mess", we're gonna be waiting till the grave! lol. I mean, really..
How do you get through feeling like you're not worthy of looking for anything because you would almost feel like you're deceiving someone to put yourself out there, and then your life is riddled with problems that they'll have to share in if they want to join you?
I'm totally fine if someone decides to peace out after they find out, I get it for sure. I'm just so unsure of how to navigate this and I've been single for 2 years now, purposely. But I'm really feeling like I'd like to look or put myself out there again, but as I said I feel it's unfair to another person.
If anyone has any videos or books that have been helpful with this I'd really appreciate it. Also thanks so much for letting me vent
Sorry I don’t really have any personal advice/experience in this area but it is something that I’ve thought about and that worries me if my partner and I were to separate. I think I would really struggle with dating generally now, having been “out of the game” for so long, online/apps make me cringe and I hate the early stage awkwardness of dating and getting to know someone.
I think I’d want to be honest and upfront with potential partners quite early on so they know what they’re “getting”. That sounds awful and u shouldn’t have to think like that but the reality is not everyone will be accepting of you dealing with health conditions, varying symptoms and everything that comes along with living this life. That said, if you’re looking for something more casual, I wouldn’t worry too much about it as they don’t really need to know any great detail. I suppose it depends on your health condition(s), how obvious they are and what you might want to share with someone.
My SIL struggled dating with her epilepsy (which hasn’t been under control for many years) and put it in her profile as she pre-empted people being put off having to deal with her fits. And she did fit on several dates before getting with her now long term partner. He says it didn’t sway his view/attraction to her at all but he was happy she disclosed up front as it would have scared him her fitting if he hadn’t known to expect it.
Long story short, if you feel ready then go for it and don’t worry about what people think. The right person won’t be out off by anything you’re dealing with and, actually, if anything it shows how resilient you are
Sorry I'm just now getting back. Thank you for such an encouraging post, I didn't think anyone frequented this thread enough to see it, so I really appreciate it!!Sorry I don’t really have any personal advice/experience in this area but it is something that I’ve thought about and that worries me if my partner and I were to separate. I think I would really struggle with dating generally now, having been “out of the game” for so long, online/apps make me cringe and I hate the early stage awkwardness of dating and getting to know someone.
I think I’d want to be honest and upfront with potential partners quite early on so they know what they’re “getting”. That sounds awful and u shouldn’t have to think like that but the reality is not everyone will be accepting of you dealing with health conditions, varying symptoms and everything that comes along with living this life. That said, if you’re looking for something more casual, I wouldn’t worry too much about it as they don’t really need to know any great detail. I suppose it depends on your health condition(s), how obvious they are and what you might want to share with someone.
My SIL struggled dating with her epilepsy (which hasn’t been under control for many years) and put it in her profile as she pre-empted people being put off having to deal with her fits. And she did fit on several dates before getting with her now long term partner. He says it didn’t sway his view/attraction to her at all but he was happy she disclosed up front as it would have scared him her fitting if he hadn’t known to expect it.
Long story short, if you feel ready then go for it and don’t worry about what people think. The right person won’t be out off by anything you’re dealing with and, actually, if anything it shows how resilient you are
I definitely feel strong throughout it all, and whatever happens, I know that the guy will have to be on my level, somewhat, in terms of dealing with hard life things, whether health or not. Some people simply will not be able to get it and that's okay but those aren't the kind of people it would help me to test the waters with.
If I'm truly interested in someone again, I'd probably disclose it early on bc not only would I not wanna shock them but I'd want to weed them out sooner rather than later if they weren't up for it.
On another note, maybe I should just let life be and see what comes of it rather than trying apps. The most inspiring CI dating posts or blogs I've seen say they were either set up or happened upon their understanding partner in some unsuspecting way.
Again thanks!
Does anyone have any interesting chronic illness podcasts? 
Just bumping to see if there are any more disabled/ chronic illness pals about that want to chat.
It really can be overwhelming. You should mention it to your Dr bc there probably are other options which will work for the pain without this side effect.
coo eeeeeeI feel really overwhelmed and frustrated. I started with chronic allergic reactions a few years ago and it feels like it’s snowballed to a more recent GP visit where they’ve suggested I have PoTs. I feel like I just can’t catch a break- I’m either covered in hives multiple times a day, have blood pressure so low I can barely function or I’m almost passing out when I stand and do basic stuff. The good days feel really far apart and I people around me don’t seem to understand, I have work pushing for more office days but I feel like absolute tit and it’s a real struggle going from being really active to feeling like I’m cooped up all the time.
You poor thing, that sounds so stressful.
Living with a chronic illness and collecting others like they're pokemon cards is so frustrating. It does feel like there's no break xx
Living with a chronic illness and collecting others like they're pokemon cards is so frustrating. It does feel like there's no break xx
How's everyone doing?x
have you been tested for Mast Cell Activation Syndrome?
Often goes hand in hand with Pots.
I've recently been diagnosed with Pots, MCAS, HeDS and Small fibre Neuropathy.
they all apparently go hand in hand with pots.
I've gone from not having anything aside from asthma and osteoarthritis (only 30 when diagnosed apparently very common in HeDS) to having all of these. Apparently always had them but losing 7 stone apparently triggered them all and I've been struggling so bad. Can barely get out of bed most days and with 3 kids to look after, the house is becoming a mess and it's getting me down. Have bad mental health issues too on top (cptsd mainly) So I feel like a burden to everyone around me!
I feel like all I'm doing is taking the kids to school and sleeping!
I’ve mentioned it to every person I’ve had handling my care because I’m convinced it’s MCAS as it affects multiple body systems when I flare up. I have nausea, stomach problems, brain fog, intense anxiety that’s not due to anything in my life. I also have hypermobility too and I’m going through a diagnosis for AUDHD (which also has a comorbidity with these things). But no one takes me seriously with it. I’m debating finding a specialist abroad so I can get tested. I really feel for you- I can totally relate. I find as well because they’re not visible issues and it’s not a condition where you look sick, people just don’t understand how it feels. I’ll never ever judge someone again for saying they have chronic fatigue and feel ashamed for ever judging it now I understand exactly what that feels like.
This is my problem with them not being visible. I am having to nap every day and a few times I've heard my partner on the phone saying to his grandparents that I am asleep and they've responded with "asleep? Again?" Or "at this time of day?"
but if I don't have a nap, which I am lucky to be able to at the moment, then I just can't make it through the day and any time I sit down, I am falling asleep.
I know they don't mean bad with the comments but I worry it just sounds lazy!
I would really try and push to get them to look into MCAS. They've given me an epi pen to keep with me at all times despite never having a bad reaction to anything apparently they can just come out of nowhere! So I'd definitely push it the best you can. They just need bloods on a flare up day if they can and urine tests.
you can also start a combination of over the counter tablets such as cetirizine and famotidine (Pepcid ac).
They also suggest montelukast which I was already on for my asthma.
Although they are now questioning whether I actually have asthma or it was Mcas all along. As I've struggled to find inhalers that work for me until they put me on Montelukast. So I'd been battling what I thought was Asthma for the past 20 years!
I’m exactly the same- I’m regularly having a 3pm and sometimes even a 7pm nap just to get through the day. I’ve stopped telling anyone because I usually get called lazy or like a weird attitude of “oh you’re that lazy generation”. Then I gaslight myself into thinking I’m completely normal and don’t have anything wrong with me.
I really need to push for proper tests and an epi pen. I’ve had a few really scary episodes where I’ve had hives around my mouth, burning tongue and it feels like my throat is tighter- any time I bring it up I just get told it’s angeodema but I am absolutely terrified of it being low grade anaphylaxis and feeling like I’m a sitting duck and waiting for a big one- I live alone so if I did have one I feel like I’m as good as dead.
Currently I’m on 4x fexofenidine a day- they’re the only ones that don’t completely wipe me out. I tried montelukast for a month but I got absolutely horrific nightmares and night terrors so got taken off them. I also suspect I’ve had it my whole life- I’ve always been weirdly allergic to things, had childhood asthma, weird digestive sensitivities that come and go. Same with PoTs- I’ve always had times where I stand up and my vision goes black or my heart starts racing from doing really basic things but never questioned it until I started almost passing out daily, being unable to stand and brush my teeth or wash up.
I went to see a private allergist and he did my bloods while I was literally head to toe covered in hives- came back and my histamine levels were low. I’ve asked about why that is/ what it means to him and now 3 other immunologists (this time via the nhs, because each call I get a completely different one) and I still get “oh yeah, it’s just chronic urticaria” while they blank out any other symptom I talk about. I decided to give myself a bit of a mental break until the new year and then get referred to some places that are actually specialising in PoTs and one for MCAS just so I might actually get taken seriously.
It's terrible that you have to fight so hard for yourself especially when the ways to diagnose it can be so simple!
I hope you get some answers, that must be really scary by yourself!
I was very very lucky that all I did was ask for them to be tested and they did! I'm very glad I did.
My pots to start with was a fight. As I'm overweight, the doctor just said " a high heart rate is normal for someone overweight"
No, a heart rate of 150+ is not normal for someone overweight just standing still that drops by 50+ beats within seconds sitting down again!
I had to ask to see someone else with that and ended up in A&E before they'd take it seriously! And even then it was only because during triage, I had to stand and wait so my heart rate was over 160 when I was triaged!
Thank you- I’m so glad to meet someone else who’s like me. I don’t know anyone out in the wild and it’s so lonely sometimes.
Ugh I was worried about the same things. When I first started with symptoms my weight shot up so I lost it before going to see anyone and if anything everything got worse. I wish health care professionals would see past weight and look at actual symptoms rather than jumping to conclusions “yeah just lose weight”
Exactly! It was losing weight that has caused all this to an extent. I lost 7 stone and it all started then as I started losing weight!
and from what I can tell, losing more weight can make it worse too!
Hello 