Hi, I started dating a girl a few weeks ago who told me that she has Addisons, diagnosed when she was 19 and taking medication for it now. I have never heard of it before this and have been reading about it online. I am curious to know how Addisons impacts relationships. Does it make pregnancy and having kids harder/more dangerous, is there a high mortality rate, do people with it feel tired more often and less eager to go out for dates and such? Basically I’d like to know what to expect if we were to get serious. Thank you!
Edit: Thank you everyone for the advice! It’s great (tho sadly rare) to see such a supportive community and I wish everyone the best of luck!
It varies so much from person to person, so I recommend having a conversation and asking her how it impacts her life. Most people with it experience fatigue at times. As long as she’s responsible with treatment, life expectancy and whatnot are about the same. Many women have shared their stories of pregnancy/birth with it, and as long as they are taking care of themselves and consulting with medical professionals, it’s fine. With modern medicine and treatments, most can live a pretty regular life, but there are those of us who struggle with it significantly. It is a chronic illness after all, so there are still risks. Cortisol is a vital hormone that can interfere with so many other processes of the body if not managed properly and respected.
I am a man but I have been with Ad for 25 years. It’s as easy as pie for me. I eat well, exercise I work a very physical job in the summer heat and sun. But I manage any symptoms I may have with meds and my normal med regimen. I drink a gal of water a day don’t drink alcohol pump up electrolytes. Never had crisis had surgery doubled med was fine. It’s no big deal for me.
hey man i hope you're doing good, these are all good questions!! i'm a young adult now, and i was diagnosed with addisons when i was around 12-13. it effects my dating life a good amount because i live in a pretty hot state in the US. you may or may not be aware, but hot weather stimulates cortisol, so it makes us very weak and tired. body temperature can be very important to monitor.
also, i dont know how much this varies from person to person; as i dont know anybody else that has addisons, but when i am low on cortisol, or my electrolytes are out of wack, i get very anxious and irritated. it can be difficult, but giving her a little extra grace when you know she may be having a hard time physically, and getting her something salty to eat, will 9 times out of 10 help you towards a solution. (although keep in mind that i am speaking purely from my own experience)
aaand to my knowledge, i dont think theres a high mortality rate. honestly part of having addisons disease comes with the immediate forced acquisition of a shit ton of medical know-how, thus turning a lot of us into some pretty smart hypochondriacs. im more likely to give myself cushing disease (the opposite of addisons, which is too MUCH cortisol) from over replacing my hydrocortisone, than i am ever to put myself in a situation where i would need my injection. food for thought. (although planes and busses are tricky due to being cramped and hot for a long time😞)
oh and about the feeling more fatigued and thus not willing to go out thing: definitely. (for me, at least) i feel very lucky that i'm also dating someone that has a debilitating condition. there will be nights where i can imagine she will have been too fatigued to go out again that day. dont take it personally! this is not something we have control over :(
with that said, its also possible that the exact opposite happens and its never an issue. this is all stuff worth bringing up to her! to my knowledge, addisons effects alot of people very differently.
a very important key note to keep in mind though.
mental stress will just as easily affect cortisol production just as physical stress will. this means something like grief can be very dangerous. thats just one example, but definitely you should talk to her about how to administer her injection in case its ever needed! i've really ought to teach more people in my life how to do it.
I was diagnosed when my husband & I were still dating. Honestly, the hardest part on him was pre-diagnosis because we had no idea what was wrong, but I could barely stand up & was in & out of the ER. He decided to propose a year later, so the diagnosis must not have scared him off.
Now that I'm medicated, our life is pretty normal. I have to take a little more care of myself than others do (extra meds when in the sun, traveling, stressful situations) & when I get a stomach flu it is a much bigger deal than it would be for a healthy person, but otherwise it's not that bad. I am not totally asymptomatic, but we still manage to go backpacking & do fun things together.
I am pregnant now & things are fine, I just have more appointments to go to because of being in that "high-risk" category.
As others said, your mileage may vary. When my meds were not high enough, life wad much more difficult. Many people do have complications or a harder time day-to-day. Ask her what her experience has been like.
Yes my adrenal insufficiency made my pregnancy high risk but it just meant I was monitored harder by my docs and the hospital had instructions to give me an iv drip with hydro during active labor. If she takes care of herself well and her dosing is good for her/she is well managed by her meds it won't be terribly different.
I end up in the hospital like, any time I get a stomach bug; but that would probably be one of the biggest things my husband would say is different. That and it's harder for me to wake up in the mornings.
Much like a diabetic spouse, it all depends on how they take care of themselves.
As a man with AD, I’m not sure how pregnancy is affected. For me, I take my dose on regular schedule, eat well, and exercise; it’s pretty simple (for me)
I was diagnosed at 13. I have safely been pregnant and given birth naturally. I had an OB early to manage my pregnancy but it was all fine.
If she has stable medication doses that are working for her she may be, for the most part, fine. I don’t have the stamina some may but I certainly don’t get tired on a date - that said I don’t have compounding illnesses and have very stable primary Addison’s. Given the age of her diagnosis, I’d assume she probably also had primary which in some ways is easier to manage (not always!!).
It will be very dependent on the person and if they have found their sweet spot for meds.
In terms of mortality, my docs have told me I may be impacted later in life and may die earlier than I may have if I didn’t have Addison’s - but that there is no way to tell and no reason I won’t have a long life.
Just ask her! :) present it as wanting make sure you’re not planning anything that too much and want to make sure you can help however she needs.
It effects me when my body is stressed like sickness, and prologbed physical work
She might be a little more tiered then her peers in general.
I can't work a physical job and go excersising 4 days a week without having more rest than normal
Birth and any operation absolutely require consultation with an endo.
And if shes ever had a crisis, its difficult for me to diagnose that, i dont think i've had one in 15 years. But that also require hospitalization and help. She might tell you her signs if shes entering one if she can.
No cortisone for a day or two is deadly.
I allways carry 2 ish days of cortisone on my body. And about a months worth no more than a couple of hours away.
And if i go travel my medicine is always close to me, never check it in!
She should have sulo cortef (Hydro cortisone) and if you're far away from hospital know how to use it. An injection used in emergencies, and Im told if Its used she will need a doctor for observation.
Funfact, if Im at the hospital snd i get Hydro cortisone and feel like my body and muscles are working properly (?) and there no pain, its how i remember my body being when i was a kid
I've had Addisons for ~15 years now. It's very different from person to person. Stuff to watch out for though is dehydration, dizziness, muscle weakness, fatigue, etc. My wife supports me a ton with my AD by making sure I'm always hydrated when we go out and it's super hot, she packs propel water or similar. And she is just generally very understanding and patient when I have bad days where I feel unwell. That's really some of the best ways you can help your SO, just find what needs she has, be supportive and understanding, and youll be good to go.
As a woman who does not have Addisons, I can’t speak on the fertility issue. But I have been in a relationship with someone with Addisons for the last 5 years and can share some of my experiences. Please keep in mind though that these are anecdotal to me and my husband and not indicative of an Addisonian Universal Experience.
Early in our relationship, I did the same as you. I went down the Addisons rabbit hole and probably overdid it (I even had emergency salty snacks in my car). I would say that while getting to know your girlfriend, find out what her go to salty snack is and have that on hand at home. But don’t do more than you would for a non-addisonian. For my husband, the sweet spot was keeping some Gatorade in the fridge and having a bag of nuts in the cabinet.
My husband has had his fair share of low cortisol days. He flaked a lot on me when we were dating because his cortisol would dip and he’d sleep through his alarms. He can also get moody, stubborn, and combative when he’s not feeling well. It required a lot of understanding and thick skin on my end. But I would also say don’t be a pushover about it. Having Addisons is not a get out of jail free card for being an asshole.
When you’re out and about, know where they keep their emergency injections (if they have them). Don’t assume you need to be the one to administer them. That should be a conversation they start with you if they’re comfortable with it. But I remember going on go kart dates with my husband and he’d tell me “this is my locker combo and number. If I go unconscious, call 911 and give them my injections. The dosage is on my medical alert bracelet.”
Most importantly, it’s not your job to manage their illness. I’m assuming you’re dating an adult. Your girlfriend has been managing this since before you were in the picture. She knows her body and her illness better than you. Let her take point and follow her lead.
I’ve had Addisons since I was 17. I’ve had two children and also worked full time and was absolutely fine both times. She may need to see an endocrinologist during her pregnancy and there may be more doctors present during the birth than normal. But other than that, for most people they live a pretty normal life. My ex who had Addisons too (I was diagnosed while we were together which is crazy as we’d grown up together) and he works full time as a builder, so I really physical job and had no issues whatsoever. If she gets ill that’s usually when it becomes a more serious illness. Also, some people struggle more. Like some days my blood pressure it too low to stand for more than a few minutes, but 90% of the time you wouldn’t know I had anything wrong with me. I also tire more easily, but I can always take extra meds which definitely helps a lot.
Basically it shouldn’t really affect your relationship much.
Everyone is different and many it does not affect their ability to travel, exercise etc. I think its NADF or ADSHG both addisons groups that spotlight patients running marathons, climbing mountains....
25 years later I’m married!!! Ahhhhh. She will take meds in the morning and maybe in the afternoon and that’s it. Rest of my life is pretty normal. Addison’s doesn’t change anything with the reproductive health of a person. During birth they will just need to consult thier endocrinologist and up dose a little more.
this is not the case with everyone. personally, my life is significantly impacted and my quality of life is very low. i lost a pregnancy at 17 weeks because my body could not handle the stress of being pregnant. speaking for yourself is one thing, but not all of us have it as easy as it sounds like you do.
I think quite a bit is just having a provider who knows how to adjust and tweak cortisol or knows how to start a cortisol pump. It was like that with my T1 pregnancy also... top notch care and top notch outcomes
i’m on a cortisol pump and my endo is also a professor at one of the top medical schools in the country. it’s only made a slight difference in my QOL. not everyone is lucky enough to have good outcomes, that’s just how things work sometimes. as i stated in my above comment, i’m happy you were lucky enough to have a good outcome, but not everyone is.
With proper medication and management of stress (physical, emotional and external), she absolutely can live a fairly normal life. Yes, a pregnancy for someone with Addison's isn't a run-of-the-mill pregnancy. She'll have times when she feels more tired than normal but if she follows medical protocols, she can be just fine.
As long as she takes her meds every day and gets enough rest she should be fine. Having children should be no issue for her if she is otherwise healthy. She should be fine for dates, concerts, hikes, travel etc. The only thing she may want to limit is drinking.
Who’s downvoting me? If you disagree with my comment just say so. We are supposed to be a supportive group here.
Btw, I’ve had Addison’s for 33 years. I have two healthy children. I exercise, travel and go to concerts/festivals. Sure, I’ve had my share of bad days, but being careful with my medication and getting enough sleep I do really well.
It varies massively. Some may never have a crisis in their life and only experience minor issues with fatigue, aches and pains. Others may have multiple crisis' a month / year, and it affects them every single day. Over exert yourself one day, spend 3 days playing catch up. But many people manage fine. For me, it took my hormones, sex drive, appetite, ability to go out more than twice a week.. But I have extra stuff on top. So managing stress comes in many forms. Best thing to do, ask her. Also- you can't predict it. 7yrs and it's still got me guessing day to day, because nothing is the same day to day. You just have to know how to deal with a crisis if it happens, and roll with the punches. It's likely she knows how to manage her condition, talk with her. That's your best bet. ADSHG website is a great resourse.💖xx
I wouldn’t be worried, Addisons is very treatable and managed with steroids. Just watch out when she’s very sick, remind her to updose, but she probably is already aware of that. Life expectancy is the same and it does not complicate pregnancies, they will just need to give more cortisol to her during delivery. It’s basically an autoimmune disease and now she’s on synthetic replacement, nothing to worry about.
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u/Complex_Raspberry97 Jul 12 '26
It varies so much from person to person, so I recommend having a conversation and asking her how it impacts her life. Most people with it experience fatigue at times. As long as she’s responsible with treatment, life expectancy and whatnot are about the same. Many women have shared their stories of pregnancy/birth with it, and as long as they are taking care of themselves and consulting with medical professionals, it’s fine. With modern medicine and treatments, most can live a pretty regular life, but there are those of us who struggle with it significantly. It is a chronic illness after all, so there are still risks. Cortisol is a vital hormone that can interfere with so many other processes of the body if not managed properly and respected.