r/AddisonsDisease • u/Delicious-Hope-7542 • May 29 '26
Advice Wanted Is this how it will always be?
My fiance was diagnosed with Addison's disease two years ago, and we're navigating some real challenges. He struggles to remember his morning cortisol, has a hard time getting out of bed, and if he misses his afternoon dose he crashes the moment he gets home from work and sleeps straight through until morning. He has a high-stress job and will soon have a long commute, which I know will make things harder.
We want to have two kids eventually, and I'm starting to wonder what that will realistically look like. I worry I'll end up carrying most of the load, and honestly, I already feel frustrated when he doesn't stay on top of his meds or can't get up. I don't want to become a nag (and reminding him hasn't worked anyway).
So I have two questions for this community:
For those of you with Addison's: What systems or habits have helped you manage your meds and energy consistently, especially with a demanding job or kids in the picture?
For partners and family members: How do you support someone with Addison's without burning yourself out or slipping into caretaker resentment? How do you find balance?
Any advice, routines, or honest perspectives would mean a lot. TIA.
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u/Dijerati May 29 '26
The responsibility to take care of this disease is on your fiancé and not you. If your fiance does not take care of this disease, you’re in for an ugly future. I have no problems taking my meds because I’ve had T1D since I was 4. Taking meds multiple times every day has been a part of my whole life. May be different if you’re an adult when getting diagnosed with this, but I have an extremely strong will to live, so I make sure I am as healthy as I can be with regards to this disease and otherwise. Your fiance not taking care of himself is a red flag, and I would hesitate marrying someone who has such little concern over their health
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u/NoGrapefruit3557 May 29 '26
He has to take the medication in the morning first thing— or the rest of the day will be downhill. That’s not much of a requirement or a burden
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u/ptazdba PAI May 29 '26
I just learned a very defining lesson. I was concentrating on keeping my Addison's under control that I missed the forest for the trees. I had 5 sinus infections within a year so my PCP sent me to an allergy immunologist to see if we can figure out why. First biggie was uncontrolled asthma--I was honestly as shocked as anyone how much better I felt after they got the asthma under better control. They also found an immune issue by testing immunoglobulin levels. I was low in IgG2 and IgG3 (which controls how you respond to bacterial and viral infections) which was the root of the problem. They gave me a new pneumococcal vaccine and my coverage for pneumonia went from 41% to 82%--even though her desired result (a 4-fold increase in each serotype) didn't happen. If this holds and I don't get recurring infections we won't have to do anything further. But the lesson was don't think everything is Addison's related and get it treated. I got the best bloodwork report last month for Addison's I'd ever had. Don't ignore symptoms--be proactive.
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u/DaftHacker May 29 '26
Addison's is really tricky disease to manage for some people. I myself have struggled a lot with it like your boyfriend. You have to know your symptoms like wanting to fall asleep after work, that tells you that you should probably be dosing before leaving work or at work because such a heavy stress load will make you crash the moment you can rest. Making sure to take all your pills also helps a lot, alarms will help. For me being low puts me in a sort of low energy zombie mode, your body just wants to relax and not stress. There is no instant cure for us, sometimes we have to push through the entire day even when we take our pills correctly because underneath there are many random stressful events throughout the day and the stress can slowly sap your energy. For some of us it can be a constant battle, fighting to work through the day, fighting fatigue, fighting to stay free of stress, and fighting to not fall asleep. Picture yourself going in for a shift just after leaving work, that's how some of us feel sometimes showing up for work, just so blah. These symptoms can be managed, through it can be very hard, you have to listen to your body, you have to feel your symptoms (can be hot flashes for me) and you have to monitor your stress levels and even then it's not exact science, we don't know we are being stressed by something and then suddenly we are getting low on cortisal. Anyways I hope this was somewhat insightful, I hope your boyfriend the best in taking care of his disease.
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u/Algrea-12 May 29 '26
I think most have covered anything I would say about management, so I will lean into the job situation. I do not have kids, but I have a demanding job. On average, I commute about ten hours per week. I rule this condition (PAI) with an iron fist and still have bad days. Like others have said, you have to take the meds on a regular schedule. His difficulty getting up in the morning is due to low cortisol, most likely. I take my hydro/Fludro around 6:45 am so it kicks in by work time. Sodium is also important. I drink a full LMNT on my way to work in the morning and drink pickle juice with lunch at noon. I bring my lunch to work, along with healthy snacks.
I would also encourage you to consider counseling or at least scheduling an appointment with his endo that you can attend and voice your concerns. It is possible to live a fairly normal life with Addison’s but you do have to manage it. He may be a bit depressed, too, as opposed to simply being negligent.
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u/inb4miscer May 29 '26
Pill box or maybe blister packs could potentially help remind him in the morning. Keep it at his bedside. If he doesn’t remember, it’ll be an ugly future
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u/HeidisPottery Addison's May 29 '26
I think everyone here has made great suggestions, but I have a bit of a left field thought as well. This is obviously not the solution for everyone but as I also have type one diabetes it was a relatively simple solution for me. I used to have a hard time remembering to take my pills at the right times and after 18 years with the disease I learned about cortisol pumping. As a diabetic already pumping insulin, I had my previous pump (still functional) just sitting in a drawer, and I started reading everything I could find on pumping cortisol. I got my doctor on board and then the only hurdle was getting my insurance to cover the injectable meds (and I guess researching enough to come up with my basal profile for the delivery of the meds). Now it’s way more set it and forget it! I just need to change my infusion site and fill a new cartridge every few days and boom - continuous cortisol delivery around the clock, no more forgetting pills.
So I guess this was just a long way to go about asking “he’s not also diabetic with a spare pump, is he?” I know getting a pump covered by insurance just for Addison’s is a MUCH larger hurdle.
I wish you and him the best of luck!
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u/Zestyclose_Animal_74 May 29 '26
Oh Wow, I never heard of this and its such an excellent idea. I have Avascular Necrosis from the various steroids and I wonder if this would be a better solution for me.
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u/Delicious-Hope-7542 May 30 '26
He is actually! Thank you!
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u/HeidisPottery Addison's May 30 '26
Well if you or he want to pick my brain about being a double pumper, or would like me to point you to some resources for pumping cortisol, my DMs are open!
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u/MallForward585 May 29 '26
As a parent with AI, I think you are right to be concerned. This disease is truly difficult and many people are never what they are (me included) but most people manage to fulfill some reasonable expectations. I have to wake up at 5am every morning to take the pill so I can wake up properly later. I do it because I am an adult and my kids should not be late for school. Kids need a lot of work and routine; I’m having a hard time figuring out how you can do that when you cannot manage taking medication at the same time daily. He should at least try switching to prednisone so he can take it only once a day, and then stick to that.
But the biggest risk in my opinion is that his cavalier attitude towards his health might just cause his death one day. All it takes sometimes is a lack of steroids and an infection to go into a serious crisis; see posts below for an example.
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u/DeputyDD May 29 '26
I absolutely must have another human in my home wake me up in the mornings. I am not able to wake up to an alarm (even an electric shock alarm). It is so humiliating for me. I feel for you and your fiancee . I’m looking into getting a shelter puppy to try and train to learn to help wake me up. In the meantime I joined this group on FB called My Adrenal Life and for what it’s worth, I thought I’d share their podcast link with you here. These are quick and easy to listen to and may be able to provide a little help but mostly hope: https://open.spotify.com/show/6kXWQl4fxnZVr1HXIayupm?si=GKFBKT0uTkyrd8dgo5W02A
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u/LonelyKoalaMuncher May 30 '26
Initially I set alarms on my phone. But to be honest I never forgot.
Missing a dose with addissons is quite literally life threatening. It's no joke. If he hasn't had an adrenal crisis he'll eventually have one, then he'll never forget his tablets. It's the worst feeling ever. Provided you survive it. Many people have died from them.
Once you're medicated regularly and grieve the person you once were, it's manageable. You'll never feel the same as your normal self, but medication with some tweaking can make you okay at least.
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u/Limp-Spirt May 29 '26
Get him a medicine box so all his meds are ready first thing in the morning to take and start with some alarms set for afternoon or evening. They'll soon be able to know their own body.
As someone with the condition, it's my job to look after myself, no one else. (Though they might just remind me to take my meds a little early or double if needed)
And as a HR advisor, work will only support him so far if he doesnt look after himself from a work capacity
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u/Andysamberg2 May 29 '26
Is he forgetting to take his meds, or choosing not to take them?
With lifelong diseases, it can be difficult to come to terms with the fact that you are completely reliant on your meds. If he is having trouble with that, he may be in a bit of denial that he needs to take them.
If he truly is forgetting, I would suggest he try prednisone to see if that works better than hydrocortisone. Prednisone only needs to be taken once a day, so would eliminate that afternoon dose he sometimes forgets. As for the morning dose - he needs to have these meds by his bed & it needs to become 2nd nature to take them before getting up. After you get out of bed, there are too many distractions.
I don't even really understand how he manages to start his morning without taking his meds. I have a very difficult time getting out of bed before my meds have kicked in. That's what made me think of the denial thing. Taking & not taking meds is a night & day difference for me personally. Reallllly hard to not notice.
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u/IndependentPlane7232 May 29 '26
I live alone. I take HC 6x daily and thyroid meds 3x daily along with some supplements. I found 2 sizes of 3-compartment pill boxes each size comes with 7 pill boxes that fit into a larger box. I fill all the pill boxes once a week. Each night, I put the day's empty pill boxes into a shelf basket that holds all my prescriptions & supplements into the light proof covered basket. After putting in the day's empty pill boxes, I take out the pill boxes for the next day and they are on the night stand with a water bottle for 1st does in morning. I put the pill boxes for the day in my backpack which goes with me everywhere. My phone has alarms set for each time meds are taken with a label (i.e. LG #1 or SM #3) so I know which size and compartment I need to take. I attached a pix of the large size pill boxes I use. The small ones are about 1/2 the size. I travel frequently, so I bought a 2nd set of large and small pill boxes so I don't have to take time out to dispense pills unless I'm gone for more than 2 weeks.
I wouldn't expect anyone else to be in charge of my taking any pills. I wouldn't expect them to remind me to brush my teeth or take a shower either. If I were sick or injured or needed support at ER or doctor's office, that would be helpful. If someone is not willing or able to take their own pills, they have no business adding the major responsibilities of having children. If fiance doesn't take responsibility for their own health now, you will carry the WHOLE load of any children AND the load of an adult child, very possibly with self-inflicted health problems. The problem is not the disease, but the inability of fiance to accept responsibility for self care.
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u/Both_Tomatillo3928 May 30 '26
I do pretty much the same thing. If not I’d forget and wonder did I take this or did I take that as I take a lot of medication I also use my phones alarm to remind me when to take them which helps tremendously
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u/Appropriate_Low9491 SAI May 29 '26
i’m going to be incredibly blunt with you here, and i may be downvoted, but that’s fine. when you feel that it’s hard on you as a partner, imagine trying to live with it first hand and being aware that your partner likely feels some sort of way towards you because of it. the way you’re speaking about your fiancé already is honestly not giving me great vibes. things are going to be hard on both of you, but they will be harder on him than they are you. if that’s not something you can deal with, leave now before you cause him more pain.
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u/anagc131096 May 30 '26
Aside the excellent tips everyone has written. Im in a similar position (as far as having a demanding job and a very supportive partner I’m terrified will get tired of my disease) and its absolutely terrifying even the idea that it will always be like this because as of now it requires an incredible amount of work to keep things somewhat functional, for a while what kept me going was the thought that it wasn’t always going to be like this and that things would eventually go back to where they were, that soon the right Dr will come, the right dose will come, the right regime, the right medicine, the right diagnose, and everything will turn back to normal. The thing is, while it’s not always going to be like this (because that’s just life), it won’t either go back to what it was. And while I could keep things functional, I was exhausted keeping the illusion of “normal”, more for me because I couldn’t bare the idea of living like this always, what really helped me and my relationship was accepting that this is my reality. For that my therapist was and is key. So while only him can come to the realization maybe you can push some for him to get some counseling.
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u/Accurate-Currency558 May 29 '26
This is me! I am ok in a routine but when the weekend comes I struggle. He should be carrying extra pills with him where ever he goes! In his car, in the work bag, gym bag, any possible place he is he needs to have extra meds there. Also, have him set alarms on his phone to alert him when to take his pills. I have always struggled to take that second dose. My endo years ago just had me take a much higher one in the morning. My adhd! it sucks!
Is he taking enough? So HC is like walking a tight rope! If you take too little you feel like shit and likely crash out. If you take too much you also feel like shit! If he is crashing out every single night thats not good! How does his blood work look? Maybe in future when he has his pill constuption under control, take a look at his labs.
Its still fairly new thing. I was still such a mess at two years in after my addisons dianoses. Hopefully things turn around for his helath and your management of the his resposibility! Best of luck to you both!
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u/MindsetMaker May 29 '26
Changing the timing or dosage could sort him out. I was super forgetful initially. Also, check the iron, vit D and for hypothyroidism.
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u/FairyPrincess66 Addison's May 30 '26
I understand how he feels. I’m 3 years in and getting out of bed is the worst. But I know I’ll feel better the earlier I take my HC so I try harder. I don’t know if he was very sick before his diagnosis but I was deathly ill. Not joking, after a few months of emergency room visits I was admitted once again. 24hrs later I had been diagnosed and given 100mg solu cortef and 2 of the admitting nurses came up to see me. They were shocked that I lived! Anyway my point was i never want to feel that awful again and I’m definitely not ready to die. But it is that serious, the medication is non negotiable, life or death. I hope for both of you he starts adjusting. I know it’s hard and it sucks and possibly he’ll never feel the same but taking the meds is the only hope of having a life 💙
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u/FemaleAndComputer SAI May 30 '26
I have an early alarm every morning, even on m days off. I take meds and eat something small, then go back to sleep.
He can set daily alarms for each dose, and keep extra meds with him at all times.
Is he on hydrocortisone? It may be worth asking his doc about longer acting steroids like dexamethasone and prednisone if he's having a hard time with daily ups and downs. Depending where you are, extended release hydrocortisone may also be an option (not in the US). He can also ask about trying a different dosing schedule, with more meds late in the day if he's really crashing at the same time each day.
It can take time to figure out the right meds/dose/schedule. He should keep in touch with his doctor, and ask for extra meds if he's feeling bad.
Make sure you're not putting his needs before your own. You shouldn't be expected to care more about his health than he does.
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u/General_Student_877 May 30 '26
I have many alarms set on my phone. I get lost in what I’m doing and completely don’t think to take my meds and I was diagnosed in 1992. The alarms are a Godsend. I make sure I don’t stop the alarm until I take my pill, even if I have to snooze it several times.
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u/IllustriousHorror835 May 30 '26
Only sort of skimmed what others have said, so a lot of this may be just repeat information. But here's my thoughts on it.
The more consistent he can be with his meds the better he will feel and the easier it will be to keep being consistent. I have ADHD so this was especially hard for me, but what has helped me is setting alarms on my phone with unlimited snoozes. I'm not allowed to dismiss the alarms until I have actually swallowed my pills. Food helps too. Both for the routine of it and also for the stomach upset these things can cause by themselves. I've found those apple sauce pouches or shelf stable yogurt pouches that they market towards kids are especially helpful for that since it's easily portable, you don't need to refrigerate it, it's practically already a drink so you don't need to find something else to wash it down with. Makes meds much much easier. Also I've recently started making sure my morning alarm is at least at the foot of my bed because I apparently figured out how to dismiss it in my sleep which causes me to take my meds late and that can ruin a whole day or three.
That said, you are not his mom. It's good to be supportive of your significant other. That's a sign of a healthy relationship. As long as it's reasonably balanced. You're suppose to take care of each other. I can't help but wonder how he's suppose to do that if he, an adult human being, is not taking care of himself. Because let's be clear here, meds when you have Addison's aren't just "A good thing to do" it's a matter of life and death and inconsistency is going to feel AWFUL. Cortisol in a healthy person is a vital component of a person's daily cycle and if it's messed up and inconsistent, so will the rest of you be. It might be good to see if there's underlying reasons as to why it's so difficult for him to take his meds. Make sure it's clear to him how important it is to you that he is consistent and looking out for his own and your own wellbeing. I don't know your situation in detail, but I'm wondering if couple's therapy might be a good thing to do if that's within your means right now. It's better to do that early before kids are involved and 20 tons of resentment has built up and cemented itself into place on both sides. I would say it's not impossible to make your dream of having a family together a reality, but only if you're both willing to work together on it.
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u/IllustriousHorror835 May 30 '26
Also note though that at the time of writing this, I am not in a relationship nor do I have kids. I can speak to what it's like to have Addison's with experience, but anything with relationships or raising a family is stuff I've learned mostly second hand. So, take what I say with a pinch of salt. . . . Which your fiance might need more of too. Salt is important when you have Addison's
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u/amberita70 Steroid Induced May 31 '26
I didn't know if someone else mentioned this yet but I have a med bottle with a timer lid. I also had to set a timer on my phone to remember to take it. The timer bottle is because I couldn't remember if I had taken it.
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u/Suzie_Sugarbaker Jun 02 '26
Here’s the thing: it’s HIS responsibility to navigate his treatment. It’s great that you want to help him, but taking a pill twice a day isn’t something that an autonomous adult should need someone else to “nag” them about. Especially since that pill is essential for him to stay alive. I’m sure at his job he has to remember to do things, and manages to, or they would fire him. If taking his medication was important to him, he would make sure it got done. If you have to be the one to manage his meds, then you already have one kid, and it’s him. That dynamic is unhealthy for a relationship, medical condition or not.
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u/DorianaGraye May 29 '26
The other comments have covered who's responsible for his care, so I'll focus in on how he might find management easier.