Common Variable Immunodeficiency Support Group

Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.

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CVID and the friends who walk away

Serenamoon
Serenamoon

Hi all, today has been fairly emotional. For weeks now I have basically watched 99% of my friends walk out of my life after telling them of my CVID. They don't want to slow down and stay in for their friend who is always sick. They are busy out there living with out a care in the world while I was a depressing reminder that sick people exist. I have been in tears almost all day.

novelidea
novelidea
I'm so sorry you are going through this, and that you feel so alone. One observation from my own experience, and this is not to blame you in any way for telling your friends, believe me, is that it's wise to choose carefully who to tell about your illness. A couple of people--or one friend or partner and a counselor--may be it. That can be enough. For many of us, even our families don't truly "get it."

But what about when you have to cancel plans due to illness, and so on? Don't you have to explain everything then? Perhaps just handle it on a case-by-case basis with a simple sentence you can repeat as needed, such as, "Oh, I won't be able to make it after all. I'm so sorry, but next time!..." (And *maybe* add, "...sometimes health issues interfere with my plans." Or maybe not.)

Anyone else? What have you experienced?
ash101881
ash101881
All of my diagnosis's came at once 3 years ago at 32 and I remember how devastated I was when friends and family dropped off the face of the earth. Since then I have come to realize that I was a great friend to them, a real friend, but they were not. Recently I have started meeting other sick patients like me through support groups and by chance where I don't have to filter out what's really going on in my life that day. For some reason these days people treat others that can't help being sick like its a character flaw.
ash101881
ash101881
Don't let people like that steal your joy. You are a survivor. We are survivors!!!
Serenamoon
Serenamoon
I couldn't agree more, and I hope to find true friends that don't require a filter. It's nice to hear that you have found people you can be honest with, that makes me so happy. We are survivors!
Victoria418
Victoria418
Your real friends will stick around!! This is the time that you will meet your real friends. Its a terrible lesson to learn, but also can be a blessing!
Treslynn
Treslynn
I am so sorry. I've let my family know that I can't be counted on anymore because I may be in hospital.since no one I know had ever heard of this,including myself, I am glad to have found this support group. I think being able to vent our frustrations to people who really know what we are going through will help.
shrink
shrink
I find that, however painful, this weeds out our fair weather friends from our all weather friends. You'll see. I'm sure it will improve. Give it some time and reach out as well. Nina