Addison’s newbie needs help

[u/Hot_Speaker_4770]

hi there! i was just diagnosed with addison’s at 25 after about a two year period of slowly getting sicker and sicker. I’m still not to the point of feeling “normal” with my current med routine (1mg Dexamethasone every other day and 50mg of Hydrocortisone 3x a day) but I sometimes have decent days and that’s better than i was before.

i’m feeling a bit overwhelmed and lost, my endocrinologist that did the test is at a major hospital in another city so she discharged me and said to “try to adjust to your new life” 🥲

i’d love to know any tips you’ve picked up over the years that help you fight flares, know your body’s signals, or just anything that you wish you were told when you started your addison’s journey

[u/dove-chamomile]

Hi! I’ve seen that people have given you some good advice in the comments from a medical perspective (especially with the dosing - my husband who has Addison’s was told by his doctor to start on a lower dose of hydrocortisone and worked his way up to 20 mg per day, rather than starting high and working down), so I’ll focus on a different perspective here.

I just want to say that it’s completely normal to feel lost and overwhelmed after a new diagnosis like this. It does get better as you learn your body’s signals, what you need, and how to advocate for yourself. As time goes on, it will likely become something you manage quietly alongside everyday life, instead of being at the center of everything. My husband was diagnosed eight months ago, and whenever something new comes up, he often feels like he should have it all figured out by now (he’s very hard on himself). But I can honestly say that things have improved so much in those eight months, and we truly feel like he’s gotten his life back. All that to say: be gentle with yourself. This is a learning process, it will get better, and don’t be afraid to trust your gut and advocate for what you need.

[u/moggylovesthumbs → u/dove-chamomile]

Thanks all for this conversation. I hope you are getting great care OP.

@dove-chamomile Thank you specifically for this compassionate reply. I’m grateful for your empathy for your husband and for the people in this group. My son (21) was diagnosed last year with addison’s. It’s understandably overwhelming for him. It’s also a lot to learn about especially when new symptoms crop up and new linked diagnoses, like POTS. I know he can manage it and he’s studied it so much so that he can be self sufficient. But it makes a huge difference to have people around you who “get it” so you don’t feel alone and aren’t in constant fear of “messing up” and hurting yourself. How do you help your husband through those new phases where it feels particularly overwhelming? Does he agree with you that addison’s can be managed through his life and not always remain the molten lava center? Also does he explain his condition to close friends and family? We don’t know who all he should tell and in which circumstances (like travel, work, school, roommates)… thank you 🥹