Re: Dianne - those who just don't get it!

[Guest guest]

Diane,

thankfully, my family is wonderful about understanding that I am never 'all

better'. My mother goes to the opposite extreme trying to keep me from

doing anything. I do have a friend that has hard time 'getting it'. She'll

say things like 'well, you can lay on my couch the same as you can yours.

it's not like you have to do anything' when I turn down an invitation to

come to her house. When I turn down an invitation to go out to dinner,

often telling her that even thinking about food makes me sick, she'll say,

'well, you don't have to eat. you could just sit there and visit with us

while we eat.' Do you know how much fun it is to go to a restaurant when

you are in pain, exhausted, and feeling like you may puke any minute? I'm

sure everyone in this group understands it's not fun at all! When this

friend finds out I've been to the ER or am in the hospital, she'll often

say, 'why did you need to go to the ER, you have pain medicine at home?' or

she'll say, 'well why can't you just keep yourself on liquids at home? why

do you have to be in the hospital if your enzymes are not elevated?' At

times when I am doing much better, I've made comments that if I could just

go the rest of my life with only having a few attacks a year severe enough

to warrant ER visits and/or hospitalizations that I would be perfectly

happy. I can accept the fact that I will have attacks and some will land me

in the hospital, I'd just like to keep the frequency down. She'll say, 'why

do always say that you know you will continue to have attacks for the rest

of your life. your diseases could all go into remission and stay in

remission forever and you might never have to go to the ER or be admitted to

the hospital again.' I try telling her that while I suppose that may be

possible, my doctor is the one who has told me that I have several very

serious chronic and progressive illnesses. He says that I have to accept

that I will have attacks and some of the attacks will land me in the

hospital. His goal is not to keep me from ever having attacks as that is

unrealistic. His goal is to minimize the frequency and duration of those

attacks. So far, he really has done pretty good, since overall I have been

much better since going under his care the beginning of June. This friend

has been a very active part of my life since I was 12 years old. She and

her family are often included in our family gathering. We had a blow out

the beginning of January, only days before I found out I have autoimmune

liver disease in addition to my other illnesses. We did not speak for 4

months. She finally called my sister and told my sister, " Well, I guess you

know hates me. " My sis told her that, no, did not hate her but that

if she had said the things to me that I had told my sis she said to me, that

I had every right to hate her and that if she wanted to have any type of

relationship with me, she owed me a major apology. For the first time in

the 30 years we've been friends, my friend did apologize - she didn't take

100% responsibility for the horrible things she said to me, but she took

more than she ever had in her life. I decided to allow her back into my

life because I do love and care for her and her family. Also, my husband,

sis, brother-in-law, and little nephew missed her and her family. She has a

little boy that is 7 and only 3 days younger than my nephew. The boys play

so well together and it made me sad that so many people were hurt by the end

of our friendship. So, anyway, I forgave her, and have allowed her back in

my life but I will never have the total blind trust I once had in her. I do

love her, but I now know that she holds more jealousy and resentment for me

than I realized. I accept her for who she is and I know longer stress about

pleasing her. It was/is like my illnesses were an inconvenience for her

because I was longer able to be at her beck and call to 'play' any time she

wanted me. One of the things she brought up in her apology was that I had

made her feel unimportant because I cancelled plans after we had made them.

I told her that if she wanted someone who was never going to have to cancel

plans, then I was not the right person to be her friend. I told her that I

never know from one hour to the next how I will feel and then when I cancel

plans, it is never, ever personal! I now simply refuse to make any plans

far in advance with her so I don't have to worry about 'hurting her

feelings' or making her feel 'unimportant' because I have to cancel our

plans. We resumed our relationship in April and she has slowly gotten a

little better about the things she says, but she still says the things above

(and many others) on a pretty regular basis.

It's not that I want to just see my future as doom and gloom, but I do want

to be realistic. The reality (and this is not just my opinion, it is the

opinion of my doctors) is that I have systemic lupus, autoimmune liver

disease, chronic pancreatitis, type II diabetes, and an autoimmune clotting

disorder. Most likely debilitating fatigue, pain, nausea, vomiting,

doctor's appts., ER visits, and hospital admissions will be a major part of

the rest of my life. I will have some really good days, some really bad

days, and the rest will fall somewhere in between. At times it sucks, but

it could be soooooooooo much worse. I finally have a team of wonderful

doctors who treat me with kindness, dignity, and respect. I have great

health insurance. I have a disability retirement income from my job as well

as SSD. I have a very supportive husband and extended family. I could go

on forever listing the blessings in my life. However, the reality is that

things may not ever get a lot better than they are right now. I accept that

and can live with it (what choice do I have anyway?). If they get better,

great. If they get worse, I'll deal with it as I must. I really don't

think I am being pessimistic, just realistic.

Well, I've written a book, simply to say that I do understand. Also, to say

that some people just absolutely cannot/ do not/ and/or will not ever 'get

it'!

Hang in there and if having someone else clean your house allows you to have

energy to do things that you will certainly enjoy more, then by all means

HAVE SOMEONE CLEAN YOUR HOUSE and don't waste your energy trying to explain

things to someone who just doesn't get it.

W