Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Support and Encouragement >> Need to Vent! >> I need new friends... http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1343349222 Message started by PamH on 07/26/12 at 13:33:42

Title: I need new friends...
Post by PamH on 07/26/12 at 13:33:42

Since I got sick, I have had the hardest year and my "friends" think I am crazy or something. One has completely stopped talking to me, never calls or turns down my lunch invite, the other made her ring tone the psyco music when I call...I asked her why my ring tone was the psyco music and her reponse was that I was psyco. Wow I don't understand how people can be so mean. :'(
I am sure they have the best time sitting around and talking about me and my mysterious illness.
I am so hurt and don't have a clue what to say to them. They have never been around me when I have gone into anaphilaxis so to them I look healthy. :( They are always coming up with reasons why my throat is clogged or why I have hives. They tell me they have foods they cant eat either and that if they do they will get sick. Oh my goodness I am so sick of them talking to me in a condisending tone!! The doc has me on mast cell stablizers for a reason Dahhh. Do they really think I would listen to them over the specialist?! Sorry to ramble on...just wondering why this disease has to ruin my life? :-[

Thanks for listening,
Pam

Title: Re: I need new friends...
Post by kimtg68 on 07/26/12 at 13:57:31

Oh Pam. I know how hurtful that is. For the most part I have stopped talking to others about what I go through. If I slip and attempt to discuss it their reaction quickly reminds me of why I stopped sharing. Out of this handful of people there are three people that disbelieved me and were hurtful and I have one word....KARMA! Each one of them now is going through there own health issue. I am not glotting but I am not sympathetic either. What I am focused on now is doing what I need to do (learn and avoid my triggers, figure out the correct mix of meds for me and take care of me). It sounds simple and cut and dry but its not. I have always been a people pleaser but with so many nay sayers and knowing full and well that I do have something wrong with me I cannot try to please them at the risk of making myself feel worse.
I am so sorry you are going through this pain.
Kim

Title: Re: I need new friends...
Post by Joan on 07/26/12 at 17:14:10

Pam,

Your friends sound particularly insensitive and mean! If you think they're worth educating, you could always print out an article about MC disease and give a copy to each of them! Hope someone new comes into your life who is a bit more compassionate....

Title: Re: I need new friends...
Post by PamH on 07/27/12 at 05:31:26

Yes, Joan you summed it up pretty well!
Thanks for the encouragement Kim.
Pam :)

Title: Re: I need new friends...
Post by Emilyviolet on 07/27/12 at 11:54:57

Pam that is horrible! i can't believe your friend did that with thr ringtone i always say "one cannot judge unless they walk in your shoes" ughh i know how you feel too, i lost both my parents and the only family i have is my sister and her 2 kids i love them dearly but my sister always called me crazy, whenever i would say i didnt feel good she and her boyfriend would say " what eles is new you never feel good" then she got my nephew saying it now so when i say i dont feel good my nephew will be like oh common aunt emmy, it hurts so much! i have no one but my husband, i have one friend who i rarely speak to who listens but shes an alcoholic and into drugs so i cant really be around her. but it hurts really bad, im 28 years old and i feel so alone! my in laws actually believed my doctor when he told me i was a hypochondriac, and they were saying i was using my husband cause i was too lazy too work, now they have seen my pictures and hives they are starting to believe me, and they are very religious people too and that really hurt cause i looked at his mom like my mom ya know and she was getting tired of hearing how i never feel good and said the same thing, " theres always somethign wrong with her" at one point they wanted me to move out cause i wouldnt work so i tried to get a job that lasted only a couple months i cant work like this and no one gets it! thank the lord they are starting to see how i really am sick

Title: Re: I need new friends...
Post by PamH on 07/27/12 at 14:06:40

Emily,
I understand with the mother- in-law thing. Hang in there, one day she will eat her words. Mine did.
I had to move out of our house because of mold, at the time we didn't really know why just that my throat swelled when I walked into the house. I spent a few nights in the suv, then bought a small tent stayed in it for a week, It was hot and the ground was hard, stayed a week at my mother-in-laws. One morning I was telling my daughter, she is17 that seemed like I was allergic to everything I loved, my favorite foods, my house and my husband (his seamen). I asked her what she thought of this situation (should have never asked...don't ever ask!) According to her I was making a mountain out of a mole hill and she then procedded to ask me if I have ever heard of a condom. :( I was like ...wow I think you are only concerned that your son is in some way not getting what he "needs" I procedded to tell her that, yes that I had indeed heard of a condom and that I was reacting to those as well. Needless to say we left the next day. Went to a motel for a couple of weeks, then I travel out west to stay with my parents for several weeks.
The inlaw thing will get better especially if you can get some sort of dx. I have found with my friends, if you want to call them that, if I don't say anything at all about my illness it runs smoother. It is very hard not to talk about it when you are in the mist of chaos and sick all the time. It is hard to care about anything else when all you can do is just get through the day. I know that from experience. Once you get dx and get on the right meds things will get better for you.
I do understand the loneliness, I had friends at work, but when I quit my job, I stop seeing them. I was too sick to visit and the Library where I worked made me trigger, so I sayed away. I quit my job 11 months ago, so I guess they have all moved on. I know I need to meet new people and get involved in something new, but I don't know where to begin. I trigger easily around purFUMES. So a lot of womens group activities at church are too smelly for me. Im hoping I will be even better in a few months or so, maybe then I can join a fun group.
Thank God for our husbands! Without mine I would be in a mess. He would come home from work and make me scrambled eggs because I was too sick to do it myselt. He is amazing!
Also if you get a dx you can set your sister strait and ask for an apology!
You deserve one! ;)
Pam

Title: Re: I need new friends...
Post by Emilyviolet on 07/27/12 at 17:42:17

yea i agree i think one day they will understand, my husband is so good to me, there are times though when he cant deal with me cause its too stressful on him, like i can be needy sometimes cause i dont want to be alone and he is very active and goes out to fix things and hes in a band so he plays his music a lot and i dont like being left alone, he offers me to go but its always too hot for me., he also will cook for me as well .. eggs lol
that would be nice if i would get an appology from my sister but somehow i dont think ill get one

Title: Re: I need new friends...
Post by Joan on 07/28/12 at 10:55:00

Wondering if there are any support groups for people with chronic and/or rare illness in your cities? Anyone with chronic discomfort will be more likely to understand and be supportive.

Title: Re: I need new friends...
Post by Joan on 07/28/12 at 10:56:29

Wondering if there are any support groups for people with chronic and/or rare illness in your cities? Anyone with chronic discomfort will be more likely to understand and be supportive.

Title: Re: I need new friends...
Post by FarmerJane on 08/02/12 at 04:07:49

I think we've talked about this before. Its so hard. You get the 'deer-in-the-headlights' look from them. Then you realize you just totally overwhelmed them with information they never wanted to know in the first place. I remember my brother telling me once that you can count your true friends on one hand. The others are only acquaintances and fade away when things get tough. My sister suffers from severe nerve pain from a 12 year old spinal cord injury. She looks perfectly normal on the outside, but is a flame of pain 24-7. Our society tends to understand only what is visible. Much like mental illness, internal injuries or disorders are misunderstood. You're not alone. We all know what it feels like. I've never found a more supportive group of people that those on our forum. Vent away!

Title: Re: I need new friends...
Post by PamH on 08/02/12 at 09:40:20

Title: Re: I need new friends...
Post by iamnotalone on 08/07/12 at 04:05:02

FRIENDS;
That's what we are ! :) We are so lucky to have each other !
Pam; after I had to quit my job- I found out who my true friends were. The ones that didn't talk to me anymore- yeah it hurt for a while- but it weeded out the "fairweather" friends from the real ones. I still have relatives (and friends) who say rather pointedly;
"you don't look sick" or " You look so good" & not as a compliment but more as a judgement. I SO badly want to reply "Well, YOU don't Look STUPID..." !!! ;D :D ;D
Thank God we have spouses who love & support us. Pam, I'd meet you for lunch anytime- and I'd Never put "Physcho Theme" on my phone (I'm not tech saavy :D) My only ringtone is "Lovely Day" by Bill Withers. Most people I don't want to talk to don't have my new number ;)
PS: Would ya believe one so-called friend actually messaged me to save the date for her wedding reception - after not contacting me for a year ?! That's one gift I don't have to waste $ on LOL !

Title: Re: I need new friends...
Post by PJP123 on 08/07/12 at 18:12:37

/@Pam
Let me preface my comment with I'm an extremely sarcastic person and have to blurt out every humorous thing that comes to mind so when I read your thread the other night I thought wow Pam only needs new friends... I need a new life. I'm down to 3 friends because I don't want to go out, do anything, because of this miserable disease.

I just began flushing I guess from how mad this topic gets me. Yesterday I felt like I was dying. My poor 11 year old daughter took a pic of me "dying" in bed to remember me. I have not done 1 thing with her this summer. I can't go in the sun, I can't get hot, I can't eat out, I can't go to the movies (noise and people make me crazy). For me I'm only 51 but feel I lived my life already. I'm never gonna get to the Taj Mahal or Machhu Pichu but I have my memories of times when I was better.

My one good friend with rheumatoid arthritis understands. Today my mother was trying to get me to stop Singulair because of the side effects. I told her the side effects she was talking about were the symptoms of this disease and this is why I started taking it. The Singulair makes these symptoms go away. I had terrible bone pain today and took Singulair and it went away. Amazing drug.

Remember you have a bunch of friends here!

Title: Re: I need new friends...
Post by PamH on 08/08/12 at 07:43:32

PjP,
I do understand how you are feeling. I was there a year ago. I was too sick to get out of bed to make myself something to eat. Horrible...I remember thinking how dumb the comercials on tv were. They were all worried about what kind of laundry detergent to buy and I was wondering if I was going to live through this. I thought the same things...I havent done every thing I wanted to do, I even started working on a bucket list!
I am happy to say that the cromolyn has changed my life and I may never be the same person I was before being sick, but I'm a lot closer than I was!
Hang in there, with the right meds, you will get better. It takes time for your body to adjust and heal!
Don't be too hard on yourself!
Pam :)

Title: Re: I need new friends...
Post by CrystalG on 08/13/12 at 01:54:51

I am sorry to hear about how your friends are treating you. I think everyone is right, after you get sick or have to quit your job and can't live a "normal" life, you really find out who your true friends are. If they are not willing to listen and believe what is going on for you, then they are not worth giving your time to. I am so glad that I found his forum and it is very true that we all have each other. I am in the same boat, since getting very sick, I have really found out who is going to be there for me and believe me, and who isn't. I have friends, ex co-workers, family, that all say "you look great, why can't you work." These people are not worth an ounce of my time or even saying anything to as they just wont believe it or will come up with questions or assumptoins. Hang in there Pam! I am also trying to find a support group or something in my area. No one understands what we are all going through unless they have been through something similar.

Title: Re: I need new friends...
Post by DeborahW, Founder on 08/14/12 at 09:00:59

I think I have simply changed my expectations, because you are completely right in that once you get sick, then you really discover your true friends. I got some lovely surprises myself when I first got ill, and sadly for those friends, once you have disappointed me, your status in my friend log has changed and there is no changing it back. LOL (Not that I hold a grudge...I just never forget. Haaa)

At this point, I tend to have different categories for my friends: those who are fun to do stuff with but whom I know I could never depend upon and those who are my true friends. I can think of 2 people whom I would list in the latter category. Everyone else is in the first one because unfortunately most people are just too self centered to think about someone other than themselves. Sad to say that I have becone so cynical...and I do have a lot of friends. However, as I said, only 2 make the cut for me as true friends! By changing my expectations of the others, they can't disappoint me because I never expect anything more from them.