As I understand it, the condition/illness is not curable, but the treatments will definitely help.

In my all-too-experienced opinion, when you have a chronic illness (like this, or like any of the autoimmune diseases this can trigger in 20%25% of the cases, I believe) you have to be careful who you talk to and what you say. Also, don't expect too much. People will disappoint you. But remember, they are dealing with problems of their own and may be feeling overwhelmed by your news.

Could you be over-sharing with too many people, perhaps? "Wanting them to understand" might be asking too much. Forgive me if this sounds like a critical comment. It's well-meant.

I have only a few people (2 or 3, not counting doctors) who get a blow-by-blow of what's going on. These are not family members. For family members, I explained things once in writing (so they could look things up if they wanted to), and welcomed them to ask any questions. They mostly haven't. They care, and they love me, and I think they worry, but life goes on.

Perhaps it is better to find a group such as this one, where people do understandand "get" that CVID and the treatments just keep going on.

Chronic illness is "interminable illness," and other people just get worn out hearing about it, I think. Yes, however, I have experienced what you mention about acquaintances "fading away." And yes, it hurts. Maybe just try to forgive them? And stay involved with them as much as you can?

Best of luck to you, and good wishes, and stay involved here, where people know what you're going through!

Its tough. Family and close friends can absolutely be the very last ones to get on board. I think in my case, I wasn't sick from birth. I didn't show symptoms until I had my daughter in my 30's and then it took years to be diagnosed. I was just a drama queen and hypochondriac (because we all know we can fake bronchitis, pneumonia, pleurisy and needing ear tubes as an adult). 7 VERY LONG years after diagnosis, I can finally say that my mom and my sister are courteous about it. Meaning they give me space or stay away if sick. Affirmation? Never and in my experience it usually doesn't happen from family. My sister? She doesn't even know the name of it after all these years lol. I have found that the change needed to come from me, not them. I simply cannot control how they act, but I can control how I react. I don't go into detail with ANYONE, ever, unless they ask. I am VERY open about my illness (I work for a huge oil company) and have over the years come up with my dummied down version that I can explain in about 5 seconds. Out of ALL of my friends I can tell you none of them have any interest in learning more about my illness, they just know I have something wrong with my immune system. And frankly they don't need to know as long as they keep themselves and sick kids away from me haha and they do a very good job of letting me know if they are ill.

I understand its a difficult time, maybe it would help to talk to others who know what you are going through? The Immune Deficiency Foundation has peer support volunteers, www.primaryimmune.org and MyIGSource has patient advocates 855-250-5111. They also have PI like us. Both are free resources. Hang in there, it does get better.

I don't tell people, nobody at works knows my problems and none of my friends. One of my sisters I talk to because she also has health issues and we can understand each other's problems. Nobody else gets to hear anything about me. I think that's the best way to be because people get fed up hearing about others' health problems.

Some people don't take it seriously. I am very fortunate because I am doing very well on IVIG. However, it also leads people to think that the IVIG makes it all better. For example, my in-laws will often lie about being sick or act like it's not important that they have a bad case of the flu or very high fever...or even the throwing up virus- if they want us to come to whatever they have planned. Many times now- I've been to their homes- they kiss me hello and I hear them hacking up a lung or find out they all have high fevers-- as if tylenol erases the illness. When I caught the throwing up virus- they thought it was funny because they all had it. I don't think they believe it's real or get how serious it can be. I gave up trying to explain it to them because they don't get it.

In contrast- my mom is always frightened I will catch something. I try to explain it as I have all my WBC but they are like kids in class- no one will do anything because there is no teacher to tell them what to do, without my IVIG.

I have had this condition for 17 years (every 3 weeks get an infusion) everybody SAYS they understand, but it gets OLD to them hearing about how tired you are, they get sick of it. I am having an anxiety attack now and feel like fing taking a bottle of pills to sleep, cuz everybody wants me to go to 4th of july and I am so tired, and I have to get up at 5 in the morning to make a 2-1/2 trip to downtown L.A. to get my infusion. I AM SO SICK OF IT!!!!! I hate it!!! I have been doing this too long and I am sooooooooo tired I want to cry. But what choice do I have, get sick and die? Sometimes I am ready to do just that.

It's a challenge without a doubt. There is the law of diminishing returns, which is there's a point at which the value or benefit you get from the energy you put into making these people understand is just not worth it. I find friends and family fall into three buckets: 1) Genuinely care, accept it, want to understand but don't really (which is ok). 2) Choose denial over acceptance because it's a natural human response to situations we can't fix 3)Don't understand, and are not interested in trying to understand. These three buckets might not be true for you, or others, but this has been my observation over the last 10 years. I spent a lot of time stressing out why some people just wouldn't "get it." Now I don't care. The only person that needs to be in bucket 1 is my wife, and she is, though sometimes she teeters on 2. Most of my family kind of blur 1 and 2. Most "friends" are 3's, some blur 2 and 3. Those 3's, I'm still there for them if they need me, I stay in touch, but I have zero interest in really putting the effort in anymore. It's a waste of my time and energy. I'd rather that time and energy be spent with the 1's and 2's and of course with doing what I can to enjoy life as much as I can while I can. It's not like one day you woke up and felt funny and oops you got CVID. Those of us that have it, have always had it. When we didn't know we had it, we lived our lives like everyone else, like our friends, like our family. Once we got the diagnosis, things changed. We had a lot more to think about, our risk assessment went from things like "should I jump off this cliff while skiing?" to "what's the best way to open this door with out looking like a total germaphobe?", "I swear if my spleen gets any bigger it will become a US Territory" or "OMG, this person in the booth behind me clearly has a respiratory cold, will they be offended if I spray them with lysol?" Keep your chin up, choose what you want to share, and set realistic expectations about the people in your life. Keep it simple, and stay focused on your health, and doing what's most enjoyable for you!

I guess my first question has to be if the reactions you are getting when you tell them about you diagnosis isn't satisfying why do continue to share it? I was diagnosed with CVID in 1982 and have been on immune globulin replacement for 33 years. Early on I concluded that people really don't want to hear about my medical problems any more than when an friendly tells me he had open heart surgery and asks if I want to see his scar. Candidly I really don't want to. My personal approach is that my immediate family and a few, very few very close friends know about my illness / condition. It isn't that I am ashamed of it, I just never saw a reason to tell more people than that. My two kids also have CVID and the have taken the same approach. I don't even think all of their apartment mates knew of their diagnosis. I'm sure my approach doesn't work for everyone but it has served me well for 33 years, a high level corporate career and s relatively normal life. Good luck

By the way the literature is pretty consistent that if someone haven't suffered major damage to their lungs or GI system, given that they get good medical care and infusions, there is no reason they should have a normal life span

Reactions to me having CVID has been mixed. My father and one of his brothers both displayed the symptoms that I have, but have never been tested or diagnosed. My father died several years ago, but my uncle describes my grandfather as having the same chronic infections etc. that I have had since childhood. My uncle has the same symptoms etc, but he's in his mid 80's and isn't interested in seeing an immunologist. He would definitely be a good candidate for testing.

My response to people that I care to tell is that I have a genetic immune deficiency handed from grandpa, to my dad, to me. Usually that handles most people. However, some still think its just some sort of vitamin deficiency or an allergy etc. Those are the ones I blow off and pay no attention to. Outside of family, there's only been a couple of close friends and a few others that I've even told that I have CVID. I'm not ashamed but feel its no one's business. And the few that know and still doubt, that's their problem. LOL

Unfortunately, CVID is not curable. Your infusion therapy should help you to live a better life however. Your age at diagnosis is important. The younger you are the better your chances are of benefiting from your infusions, usually. There are many, many different combinations of CVID so that will play a big factor in your success. Try to stay positive by communicating with others who share our disease. I have had my diagnosis for over a decade now and from my experience sadly, I can say that this is an isolating disease. I wouldn't count on others ever really understanding what you are going through or understanding the disease itself. I don't mean to sound so negative, but it is just the way it is for many of us. My own family, who are very supportive and helpful, still do not understand how this all works. There are times that I know they doubt me. There are times when things don't seem to make sense and that opens the door to skepticism and disbelief. Eventually, this is something you will need to come to grips with. I started therapy for just that reason. It helps. Other than that, I have found over the years that I only communicate regarding my disease when it is necessary. No one, not even your loving family, wants to hear never ending complaints about something that no one seems to fully understand. We are really set up for doubt.