how to tell others of my diagnosis

moogi · March 18

I was diagnosed with mild Alzheimers last month. I told my immediate family members (none of them were surprised). They are incredibly supportive. But I feel like I'm in a pressure cooker. I want to tell others and did tell two lifelong friends. Their responses were not helpful—one said tough diagnosis. She clearly didn't know what to say. The other minimized it like she didn't believe the diagnosis. She went into cheerleader mode. I am not going to tell others because it's too painful. Of course, they'll eventually know. I've read all the material about when and how to tell people. I'm happy to have found this website so I can talk with people with the same diagnosis and hopefully release some of the stress of having only immediate friends and doctors to talk about this with. Who have you told and what kind of response did you receive?

Dneige89 · March 18

Hello. I was diagnosed with MCI/Alzheimer’s in December 2025. It is mild at the moment. I’ve told my family and two close friends. Both my family and friends were very supportive. It was actually my PCP who responded, “Oh my God, I’m so sorry!” Encouraging, no? I don’t feel it is necessary to tell others I meet or know who are not close to me. It is a private matter that affects each person on its own timeline. I wish you all the best.

jaycey · March 18

OMG, I feel so much for you - and I've had such a mixed and difficult experience myself, and it hurts on a daily basis. One friend said "everything's going to be OK" and when I said it wasn't, she said "yeah, I said that for me and not for you" and that was the last I've heard from her. Others minimize, or ask me the same questions over and over, as if they can't keep in their minds exactly what this means today, and what it's going to mean for the future. Other. people contact me every 2 weeks and ask how I am, and/or ask for a Zoom, and I kind of feel like they are assessing my state, which doesn't feel great. Maybe the worst is those who say "I'm there for you, and when I say I've had something bad happen (cerebral swelling from Kusunla, or a scary test of some other kind or a symptom has gotten worse) and they don't respond to the text for a week. The best is an old friend I had kind of lost contact with, but who is the same irascible difficult person with me - she hasn't changed her approach to me - but I can call her and say I'm scared and she doesn't run away. My primary care doctor disappeared, and doesn't reply when I say I have symptoms . . . I've switched doctors and the new one is much better - that's essential. And I adore my neurologist, who answers emails . . .

Today I'm going to attend a group for people who have something to grieve - apparently it can be either a death or the loss of something in their lives. I haven't attended before, but I'm hoping I'll be able to say all the grieving I'm doing for my future, for the happy retirement I won't have (I wanted to open a restaurant), for my fears of who I'll become. Because we are all grieving, as well as just trying to survive in this new reality.

GEH · March 18

Most of my friends just said like, nothing, when I told them. They still do not speak about it or ask me questions about how I feel about things or how my daily life is going or ask if Leqembi treatments might be helping. I have no blood relative family but my friends have always been my family, one of which I have know for over fifty five years. I find it all a very curious reaction. Not at all how I think I might act in a similar situation. So I just pretend, like them, that all is okay. I do all the things possible to read everything I can about Alzheimer's. I have a great neurologist who is open to try anything. Very supportive when I come to her asking for a prescription for a drug I researched and thought might be helpful. I am currently taking thre supportive drugs along with the Leaen I infusions. Preparing for the inevitable while doing everything I can to lengthen the time between now and the inevitable. I have tried to find a support group to meet up with but all I have found require that a caregiver attends with you. Not telling you all of this to be whiny, but rather just state the frustration with the rigid requirements that surround being a single person navigating to world of an Alzheimer's diagnosis.

moogi · March 18

https://alzconnected.org/discussion/comment/268294#Comment_268294

thank you so much for this response. It helps so much to know I'm not alone. Just hearing from people like you who are living with the godawful disease is helpful. And I am so, so sorry you have this diagnosis.

jaycey · March 22

I know. This is the club that nobody wants to belong to! But it's so helpful to hear from others in similar situations. Keep writing on this forum - there's lots of useful information, and it's a place to share the hard stuff.

Lyndamac · March 22

I was diagnosed 2 weeks ago, my dad had it- My DH took news as usual- full into research, creating a plan, etc. Not sure he really realizes what will be involved , but he will take care of it. I have a friend who hasn't responded to my texts but once. Once I told her my diagnosis. I worked parttime as an RN with disabled adults and was asked to resign. My world fell apart- Grandsons live out of state, As does only sibling, who is dealing with another variety of dementia. I feel like I am floating in an empty void. Any helpful ideas? Thank you!

rmisheloff · March 26

https://alzconnected.org/discussion/75596/how-to-tell-others-of-my-diagnosis

https://alzconnected.org/discussion/comment/268540#Comment_268540

https://alzconnected.org/discussion/75596/how-to-tell-others-of-my-diagnosis

I don't know if this is helpful. But I have a similar situation. I was diagnosed some months ago. I know I have MCI.What I've chosen to do is is to say to some friends, colleagues, and family that I've had tests that indicate that I have the biomarkers of Alzheimer's, that these are good predictors of a disease that is progressive, but that at least for now, I'm doing OK, and continuing to do the things that I enjoy. And how long will "for now" continue? If I get follow-on questions about what the future holds I've responded that i don't know, as the rate at which the disease progresses is quite variable. So far that's worked reasonably well. Saying that I have biomarkers for the disease, rather than that I have the disease, seems to have been useful because people associate the disease with dementia, i.e. don't fully get that there are early stages of the disease at which point people affected do not act demented.

eaglemom · March 29

This is a tough subject to share and to hear. That's because its so very personal. No one wants to have this diagnosis and no one wants their family member or friend to have the diagnosis. Which leads it back to how do you share the news? You share it with whom you chose when you chose to share it. There isn't a timeline on telling people. Yes, others may have some suspicions something is happening, but that is about them & not you.

Sadly you will more than likely have some people whom slowly disappear out of your life. However, if you get involved in support groups, etc. you will immediately have people who not only understand what you are going through, but will be there. Thus new friendships will form. You will find you now have friends who knew you before the diagnosis and those you've met after the diagnosis. The key is becoming involved in support groups and being active in those groups.

It isn't an easy journey. You need friends, do not isolate yourself. We are here to help guide you along the way.

eagle

Watson1 · March 29

Welcome to the "Alzheimers Club" I've been in it for almost 3 years now .where in it deep not the plague but by others response you think it might be, oh well i guess we find the real friends. our state alzy group put on a state wide art show forpeople with alzy, i put in 4 works that were excepted, gave a little speech about famous artists who had alsy its who we are now a huge number of people whose job it is to teach others what the challenges and changes our new world contains, we are a proud group in shock but we have each other and hopefully a kind care partner to help carry the flag. yes i have alzheimers and it will kill me one day but right now here i am so take it or leave it or give a hand there's no middle ground any more for me. take a moment and i will speak of the alzy road!!!!!!!!!…………..

GEH · March 29

Oh dear Watson it is beautiful!!! Thank you so much for sharing a part of yourself with us. ❤️ Ge

how to tell others of my diagnosis

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