Weird Things People Say

[Deanne Hull]

HI Everyone, just thought I would share an experience I had today with a lady who i was explaining to about our disease we have and how it affects you and the medication etc and she said quite boldly that I should tell my body I don't want it any more and it should go away..and maybe it was caused by depression. OMG I know you need to have positive thinking but that is a bit over the top. OH dear..has anybody else had this kind of experience and what have you said to them?

[elephant]

Yes, a neighbor told me this and sent all these prayer verses for me to recite daily! Basically I got this disease because I was negative and brought on myself!!! Being the nice person that I am, I just politely said, "Thank you." :rolleyes1:

[Sangye]

I've had this happen many times. I think the worst was early on when I ran into one of my patients at the local health food store. I was on oxygen, barely dragging myself along. She asked "What caused it?" I explained the usual medical stuff and she said, "No, what caused it?" I repeated some of it thinking she just didn't understand. At one point I was so exhausted, I said "My mind wants to talk, but it's like my body has declared mutiny." Well she went to town with that! It hurt me deeply because I was wide open emotionally. Good thing my therapist mopped it up later.

What I learned (from my therapist) was that people's reactions to seriously sick people are an indication of their fears about their own mortality. People like that lady are actually terrified that the same thing could happen to them. They have to find a way to explain why it couldn't happen to them by finding weaknesses in the sick person. After that I started to watch people's reactions from a little distance. Fascinating.

[ScreaminMeanie]

I will never forget the first time I had WG. I had been taking CTX for about 6 months and felt horrible. At the time, the very little that was known about WG was that, untreated, it was "uniformly fatal." I was whining a bit to the wife of my (ex)husband's best friend, who was a nurse, about how bad I was feeling. She said: "So stop taking the drugs." I said: "But I'll die!" She said: "You will if you think you will."

I have never been so hurt in my life. That someone I considered a friend, a nurse, of all people, would imply that this was all in my head. It was years before I explained to my (ex)husband why I stopped going with him to visit his friend. When I did finally tell him, he was infuriated.

This time, I of course let my two immediate bosses know what was going on with me because of the extra time I'd have to take off for doc appts, blood draws, etc., and that with the chemo drugs I might feel a little off sometimes or get sick a little more often. They asked me if it was okay if they told the director. I had no objection, so they mentioned it to him.

He came by my office one day (normally I go weeks, if not months, without seeing him, which works for me - he's kind of a distant and mostly benign tyrant), stopped in the doorway, and said "I hear you're sick!" I briefly explained that I had an autoimmune disease, what it was called, how it normally affected people (lungs and kidneys), how I had a very limited form of it, and the kinds of drugs I was taking to treat it. There was a moment of silence, then he said: "That's weird." And walked away. That actually made me laugh.

[NicShaf]

Even in my short time since being diagnosed, I have experienced this. It makes sense that people would be afraid of "catching" it themselves and so curious as to where it "comes from" or what caused it. I'll have to keep that in mind the next time someone reacts this way, knowing that everyone experiences this makes me take it less personally.

[pberggren1]

I have had a few people tell me to stop taking meds and boost my immune system. Some of my family think I am faking it and said just get a job.

[stikker]

Do they say these things to cancer patients?? Is it just that this disease is not understood? People are incredible. It is very sad for your family to not believe you. I'm sorry.

[ScreaminMeanie]

I have had a few people tell me to stop taking meds and boost my immune system. Some of my family think I am faking it and said just get a job.

I hate that most people don't understand the difference between an autoimmune disease and an immune-deficient disease. Almost every time I try to explain this silly disease to someone, they suggest I take more Vitamin C. Or garlic, or echinacea. *headdesk*

[Psyborg]

There is a perverse part of me that wants to tell some people it's infectious...not sure why. Some people are clearly not concerned for you but are just clearly trying to be sure they won't get it.

Or the dork I worked with giving me a hard time about my hair thinning, I actually took great pleasure in reminding him I'm on chemo and watching him squirm :p

[ScreaminMeanie]

I must admit I've been a little bit mean on occasion. One former co-worker, before I was diagnosed this time, every time she would hear me talking to one of my actual friends at work about what was happening with my health, would step into the conversation and start talking about how she had the same symptoms I did. Since I was already pretty convinced this was a flare, I (genuinely concerned) suggested she get an appointment with a rheumatologist. She said, "oh, I saw one of those last year, and she didn't do a thing for me." When she found out I was on chemo drugs, she finally stopped talking to me about her symptoms, but did start talking to me about how she had decided that drugs were not the answer to any medical problem. On her last day, about a month ago, I asked her if she'd ever gotten any answers about her medical problems. She said, "oh yes, I went to a chiropractor, and I'm fine now." She continued on to suggest that I would have been fine by now, too, if I'd gone to her chiropractor instead of a rheumatologist. That's when I think I might have said something a little bit mean. ;)

[Sangye]

Many of our symptoms are not specific to Wegs and can be caused by a zillion different conditions or imbalances. So maybe a chiropractor did correct whatever she had. But that arrogance of hers is terrible, regardless. If you ever cross paths with her again, you can tell her how I-- a chiropractor-- nearly killed myself trying to treat Wegs using only holistic medicine, including chiropractic, of course. :glare:

[Sangye]

Do they say these things to cancer patients?? Is it just that this disease is not understood? People are incredible. It is very sad for your family to not believe you. I'm sorry.
Yes, cancer patients get the same garbage aimed at them--maybe even worse, because cancer is so well-known that many people have their little theories about the "real" cause.

[gurinbasra]

ScreaminMeanie,

You know it's bad enough for someone like me with a large East Indian family that has all kinds of advice from a regilous aspect to seeing a yoga expert to a pressure point expert - all who can cure me magically! But your post reminded me of one of the shocking things I had a cousin say to me. When I told her that I had to take the meds she said that "well at least you have a choice, you can either choose not to take the meds or take them, so it's all about your choice". I really didn't know what to say, but my mind was screaming that, "I'm sorry but death is not a choice for me, I've got too much of a great life", but as you said it's very hurtful and shocking that people don't really understand what AI diseases are especially a rare one like ours!

I've come to realize that the majority of the people that are so full of advice that just comes out the wrong way are actually very concerned for me. No one likes to see a family member or a good friend become sick and it's through their fear and desperation to see us get better that some of the "advice" or comments do nothing to help us.

These are times I'm fortunate enough to just turn off the hearing aid, it's so much easier to keep smiling and noding my head when I don't even know what they're saying!

[pberggren1]

These are times I'm fortunate enough to just turn off the hearing aid, it's so much easier to keep smiling and noding my head when I don't even know what they're saying!

I so know what you mean Gurinder.

[ScreaminMeanie]

I've come to realize that the majority of the people that are so full of advice that just comes out the wrong way are actually very concerned for me. No one likes to see a family member or a good friend become sick and it's through their fear and desperation to see us get better that some of the "advice" or comments do nothing to help us.

I thank you so much for sharing this perspective! I think that's absolutely true, and I shall try to be more patient with close friends and family (of course, my family and old friends have all been through this before, so they have a better perspective than my newer friends).