Welcome, Guest. Please Login
MCD - Mast Cell Disorders
  YaBB is sponsored by XIMinc!
  HomeHelpSearchLogin  
 
Page Index Toggle Pages: 1
Send Topic Print
ANGRY (Read 8356 times)
FarmerJane
Tutor
**
Offline


I Love YaBB 2!
Posts: 48

ANGRY
08/16/12 at 03:29:07
 
Angry

Was told last night by a close family member that had my father not died of ASM, I wouldn't be half as sick as I am today.  This family member also told me that I'm paranoid and that I am imagining this illness.
So tired.  I don't even have an official diagnosis yet.  Went through 4 doctors who didn't believe me.  Now, I've found one that seems to understand and is walking me through testing for a sound diagnosis based on facts.  My dad was misdiagnosed for 30 years.  Yes, I'm being careful. Yes, I'm reading medical journals and studying.  Yes, I'm a part of of a support group. But, NO, this is NOT all in my head!!
My reactions start at Stage III anaphylaxis.  I skip 1 and 2 altogether.
When I'm laying on the floor with seat pouring off of me in buckets and barely breathing, I find it very hard to believe it could possible be "all in my head."

Angry and Sore!!
FJ
Back to top
 
 
IP Logged
 
KatFromMD
Ex Member





Re: ANGRY
Reply #1 - 08/16/12 at 10:14:52
 
Oh good grief!!!  How awful for a family member to inflict such emotional pain, not even realizing that by doing so they're also causing you physical pain (I'm guessing all that stress didn't help your symptoms at all)!

My family honestly just didn't get what was wrong with me or how sick I was, because I never saw any of them when I was sick.  They didn't really come to visit me, and I would rest up for days before seeing them.  If I was having trouble while seeing them, I'd have to suck it up or go lie down, but they never really SAW me having trouble.  (Unlike you, I'm a leaker, so it isn't as obvious.)  

I'm guessing this person has never seen you in anaphylaxis.   I can't imagine anyone saying it's all in your head if they had seen that.  So on one hand, I would cut them a little slack because they're entirely ignorant.  On the other hand, they clearly lack any form of empathy or tact.   Wink

It wasn't until I finally got a diagnosis (eight years into my most recent horrors) and sent Dr. Afrin's very long, descriptive email to my father that he FINALLY seemed to get just how debilitating this illness is and how very difficult it is to diagnose and treat it.  I feel very vindicated, but in some ways, it's too little, too late in that I know everyone harbored such doubts about me.

I'm afraid that some of your family just aren't going to believe you until they actually see you in crisis or you get a diagnosis (backed up by labwork).  It's very hard for some people to accept without seeing it with their own eyes.  You need to concentrate on keeping yourself healthy and sane, and let them think what they want.  You absolutely have my sympathies, though, and I'm sure most people on this board can relate to this.    

We believe you.

 -Kat
Back to top
 
 
IP Logged
 
PJP123
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 193

Re: ANGRY
Reply #2 - 08/16/12 at 15:55:00
 
I'm sorry you're not being validated by a family member.   My husband of all people was the worst.  He just thought I was spoiled, lazy and crazy.  We nearly got divorced because I was sooo sick in bed and couldn't do anything   around the house.  I never got credit that I raised (am raising) 4 kids and everyone is alive and well.  In our lives we are not having the same experiences as non mast cell disease people.  I've said to my husband that the person in the wheel chair is better off than us because not every system in their body is messed up.  They just can't walk.  (Please excuse my ignorant analogy but you know what I mean).  No one could possibly understand what we go through and how we are mistreated by the medical establishment so why bother explaining.  Anytime I try and talk about how I found out what is wrong with me... old friends start getting a glazed over look in their eyes, like I lost them.  Oh well.

I also find that people think we're weired because we are so well read on medical issues.
Back to top
 
 
IP Logged
 
Joan
FORUM ADVISOR
*****
Offline



Posts: 1502
Colorado
Re: ANGRY
Reply #3 - 08/16/12 at 18:18:22
 
This is the most frustrating thing, trying to convince people that we're not crazy!  My former doctor wrote in my chart when I was having flushing episodes with tachycardia every day, "I tried to convince her that nothing is wrong with her."  He told me that I could go to all the specialists I wanted, but no one else was going to find anything wrong with me!

My family believed me, because I was turning bright red, lost 15% of my body weight in a few weeks, and couldn't eat more than a few foods without reacting.  Still, only a few friends really understood.  Some said, "But you look fine!"  The glazed eyes.  Yes.  Have seen that.  If I can have only one person who understands, I feel lucky!
Back to top
 


Joan
 
IP Logged
 
DeborahW, Founder
FOUNDER/ADMIN
********
Offline



Posts: 1224
USA
Re: ANGRY
Reply #4 - 08/17/12 at 01:15:19
 
You are not alone. So many of us experience the same thing. I am lucky because my husband is the one person who totally gets it since he was always the one to be with me when I would pass out and have all sorts of anaphylactic symptoms. Even now, though, because I have gotten myself do much better, he expects me to be able to do things like a normal person (until I make a snarky comment that I have mast cell disease and can't do everything! Haaa!).

My family is the worst!! My younger brother who is so close to me totally doesn't believe that I have a disease and thinks if I just ate "right" (those foods would literally kill me) and exercised heavily every day, I would be fine. My older sister made a comment once when she was mad at me that I just make it all up and there is nothing wrong with me! (For those new to the forum and who don't know me, I have Idiopathic  Anaphylaxis.) I even see my 2 older sisters experiencing some of my symptoms, and yet they pay no attention. When I first got diagnosed, I sent an email describing my condition because I knew my sisters had similar symptoms. They just ignored me, so I figure it's their problem. They are lucky in that they only have a couple of my symptoms, and for their sake I hope it never progresses for them. Yet, their refusal to believe that there is anything wrong with me is ironic given that they have a couple of my symptoms.

Yes, family members can be a real pain!
Back to top
 

Feel well!
DeborahW, founder
WWW  
IP Logged
 
mikev
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 188
st louis, mo
Re: ANGRY
Reply #5 - 08/17/12 at 09:42:34
 
Jane:
You bring up a very sore subject with me as I was one of those family members who thought my Mom was a hipo & how could she be so sick & look so good. I avoided calling her so I didn't have to ask the question, how are you doing. She was midiagnosised her whole life. When I started having issues my Mom was already having issue that lead to her death. So many times now I wish I could talk to her & ask the question. Luckily my wife believes me as my daughter has RA & some masto issues. The rest of my family now believe me & my mom as I had to quit some activities that I loved. But I still have strong guilt feelings for not believing her.
MikeV
Back to top
 
 
IP Logged
 
kimtg68
Guru
*****
Offline



Posts: 545
Alabama
Re: ANGRY
Reply #6 - 08/17/12 at 15:03:12
 
I share in all this frustration with others not believing me (mostly the lack of understanding from my husband) even though I have a firm diagnosis of MCAS. You know the old addage that one person ruins it for all the others? Well although it hurts me that hubby is not more supportive and others simply just are not educated enough to understand so they disbelieve, my love for my husband brought me to a place of understanding. I do still struggle some at times. But I remind myself that his ex wife and his father were both hypochondriacs and they ruined it for me. I try to reprogram my emotions so I am not upset when others do not believe me. The MOST important aspect is to take care of myself and others will just have to work around me. MikeV: My kids are not understanding either. But my love for them does not change. I do not hold it against them. As I'm sure your mom didn't either.
Back to top
 
 
IP Logged
 
Joan
FORUM ADVISOR
*****
Offline



Posts: 1502
Colorado
Re: ANGRY
Reply #7 - 08/17/12 at 17:11:37
 
Of course I don't know your husband's family, but I think many "hypochondriacs" actually have something wrong with them, but it's undiagnosed, because I was more or less labeled that by my former doctor.

Yes, some people are "sick" because they want sympathy or have  Munchausen's, but that's something that makes me sad, because they are suffering, too.  But, if you're talking about people who control others or get out of doing work by being "sick," then that's a different story altogether.
Back to top
 


Joan
 
IP Logged
 
kimtg68
Guru
*****
Offline



Posts: 545
Alabama
Re: ANGRY
Reply #8 - 08/18/12 at 02:55:59
 
Joan what an excellent point and something for me to chew on for awhile.Thank you so much for your words on this.
Back to top
 
 
IP Logged
 
Joan
FORUM ADVISOR
*****
Offline



Posts: 1502
Colorado
Re: ANGRY
Reply #9 - 08/18/12 at 17:43:50
 
 You're welcome.  Sometimes it helps me to see if there's another way to look at something, especially when it involves illness.
Back to top
 


Joan
 
IP Logged
 
PamH
Mentor
****
Offline



Posts: 447
Indianapolis, IN USA
Re: ANGRY
Reply #10 - 08/19/12 at 12:47:02
 
You should have to this person that it is not in your head, but in your stomach, tons of mast cells in your stomach...then you should have told them to read up or shut up!  Wink
Pam
Back to top
 

Pam
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print