I am in hospital every second week for IVIG infusions for CVID. Over the past 8 years I have made many friends or so I thought in the infusion room. Patients that infuse with me are there for a variety of reasons.
Since I subscribe to IG Living magazine I was printing a copy and leaving it in the infusion room for others that may benefit from the articles.
While leaving an issue with the reading material, a nurse asked me what kind of magazine I was leaving. I replied that it was IG living; a magazine for patients on IVIG treatments.
He thought the name IG living was humorous and began to laugh uncontrollably. He then began to make fun of me saying that IVIG was not a way of life and it was only a drug.
After the commentary I took my magazine, and put it away .
I have never shared anything with the patients or staff again.

Yes, I have, though not meant to hurt.  The comment, more than once, has been said "You can't plan anything with ... because you never know how she is going to feel" or "You can't count on her".  It may be true, but it hurts nonetheless.  I suffer with Common Variable Immune Deficiency (CVID), chronic pain due to fibromyalgia & osteoarthritis, chronic fatigue excacerbated from monthly IGg infusions, as well as some other issues.  I also have my elderly mother living with me who suffers from a form of dementia.  I have a life full of responsibilities to care for my mother, my home, my husband (who will be retiring soon and able to help me more)and find time to take care of myself so I can do what I must do.  I am not complaining, but sometimes I would like to be included in plans.  I know I may have to bow out last minute, that's a fact.  But, sometimes I can participate.  I don't have the plague, just limitations.  That doesn't mean I don't like to have fun like everyone else.  The illnesses I suffer with don't show like a broken leg, etc., so people who don't know me don't realize.  I really don't expect them to, but it would be nice if friends and family would be more sensitive to my feelings when they say things to others or to me about my situation.  It is surely not my choice.  
This isn't quite what you confronted, but it is still a reality of what others say can impact someone.  I am pretty tough though and have learned to live with it, so it is just part of the 'game'.

How awful, Sue!  It is hard to believe a nurse would behave so badly!  You should get your doctor and the office a subscription to the magazine.  They might read it and realize what a great resource it is for patients with health problems requiring this treatment.  I found out about the magazine while I was still working, managing an oncology practice.  One of my bosses  
(an oncologist) knew about my CVID and gave it to me.  I am very grateful.
God bless you, Sue.

@Linda, I really feel like you should develop some new friends to add to the old ones, friends that have more compassion.They are out there. I know.

I haven't had the same happen to me, though I find it's my family that simply doesn't understand my CVID. I have CVID due to chronic use of the oral steroid Prednisone, which I have to take rather regularly due to severe asthma. Because of this I'm a corticosteroid dependent and have not only developed the CVID but also Type 2 Diabetes, cataracts, which have been repaired, and orthopedic problems this requiring surgery. Note: I've been on the Prednisone either daily or every other day for over 25 years.

My family, mainly my siblings and in-laws, even acquaintances are continually telling me to simply stop taking the steroids then I wouldn't have to check blood sugar 6 - 7 times a day nor gVe to take my weekly subq Ig Hizentra infusions. Well it's not that simple. If I were to go off the steroid, which I have tried to a few times with my doctor's help only to end up very I'll and in the hospital. I'm sure these people mean well but they just do not understand, plain and simple. I've heard a few snickers behind my back as I've walked away. I've also over heard the remark, "Well, she just likes to be addicted to the steroids, and her weekly infusions. Don't these people realize I DO hear what they are saying and that it does hurt…deeply.

I'm sure I can speak for all who suffer from a chronic illness, we'd give anything to not have the illnesses nor have to take the Ig infusions, be it IV or subcutaneously.

I have been treating with IVIG for 4 years.  I feel isolated and alone.  I have stopped going to church for fear of getting sick. I am not included in planning of family parties, just expected to show up.  My house is a mess because I am to tired to clean.  My husband does not understand about chronic fatigue. Everyone thinks they know what is best for me: "You just need to stop taking all that medicine and you will have more energy. You need different doctors, you need to eat or not eat this, you need to exercise more, you need blah blah blah." I don't call my family much because all I get is lectures.  I have no support system.  What do I do?

I can empathize. My daughter calls me Bella because of my IVIg. I feel so lonely because I am also blind and cannot drive.

Andrea, I am sorry you feel you must isolate yourself from your church family and others in fear of catching something.  Talk to your doctor to see what he/she says about it.  The whole intent of getting IVIG is to give us some of the missing antibodies to protect us so we can live a more 'normal' life.  When I go to church or somewhere with a friend, I am often surprised by how much better I can feel when I get 'outside of myself' and focus on other things!  Try to pace yourself by only doing one thing, then rest or do something your enjoy...reading, sewing, crocheting, watching a favorite TV show or movie, taking a walk, then do another thing.  Don't try to do everything at once because you will end up paying for it with more fatigue or pain.  But, when you accomplish the little things, it makes you feel better about yourself and encouraged to want to try to do a little more.  Of course, due to the busyness of life, we can't always choose this way, but when you can, give it a try.  It is all trial and error.  Some days I feel I can do nothing, or feel defeated and don't do anything.  But, when I do the little things, one at a time, I am often surprised by what I can get done.  I often have to make myself take that first step, but it is worth it.  Do your best not to isolate yourself...we have enough of that with those who do not understand what we have to deal with.  We must forgive them and move on (easier said than done at times) because they can't understand if they haven't experienced it or tried to learn about it.  Most people don't really mean any harm, they just don't understand.  God bless you and I will remember you in my prayers.  Hang it there and look for the good in people, things, and circumstances.  There is more good than we realize when we get into our 'dark' times as I call them.  I am so sorry you are suffering.  I am so thankful to have this forum to know there are others who know some of the struggles we go through.

Well, I just re-read all the comments above, including my own.  Boy, I was having a good day, wasn't I?  To be honest, I had my IVIG last Friday and have felt lousy since!  One of those months, yuk.  My poor husband hates to see me suffer and shouts "those treatments aren't doing you any good...look how sick you are!"  I try to remind him of how truly sick I was before starting IVIG, such as the TB I had in 2002!  My friend suggests I need to quit taking so many meds...she is down to one and is doing great...while I know she loves me and means well, it sometimes makes me sad that no one knows what it is like.  Then, I go to these blogs, read how all of you are coping and it does encourage me.  So, I want to say thank you for taking the time to participate in these conversations.  I am not happy you are sick, but that you understand.  God bless all of you.

After being abandoned as a patient in 2011, then slandered to other providers, thereby going without IvIg infusion for two years, about a year ago I finally connected with a wonder immunologist who promises me he's "not going anywhere" and orders my IvIg, 30gms of Flebogamma every 3 wks. However, the ENT/Allergist where I've been a patient for over a yr, who's been administering my allergy shots, with whom I got along well, and where I was almost at maintenance dose, dumped me as a patient without good cause, their CEO (who is married to one of the other drs) falsely accusing me of owing them $2.47, though they've known since Day One that I'm a Dual-Eligible on both Medicare and Medicaid, and Dual-Eligibles owe nothing. The dr took her side, yelling at me on the phone complaining about how slow and how little Medicaid pays, too much of weenie to stand up to the other dr and his wife, which really hurt my feelings and surprised me about him, which means he showed his true colors. The next thing I know, the CEO "suspended" my healthcare, failing to respond to my attorney's request for me to continue care as an ADA Accommodation Request, in violation of my ADA rights, so now they're going to get sued. We need legislation in this country prohibiting providers from dumping Medicare/Medicaid patients, particularly aging, disabled patients, who could die without the treatments they're receiving. I've been almost 3 months without allergy shots, as the closest ENT/Allergist I could find who does end-point titration is booked out until 05/20/14, and then I have to start all over from scratch. There is no excuse for such greed and abuse toward patients on Medicare and/or Medicaid. They shouldn't have accepted me as a patient in the first place if they didn't like my insurance coverage. Please sign this Petition to stop this practice: www.change.org/.../president-of-the-united-states-stop-patient-dumping

www.change.org/.../president-of-the-united-states-stop-patient-dumping