I've lost my empathy for family members

[sue1234]

I've had POTS for 13 years, and had quit driving before that.  I did not have a sibling even inquire what was wrong with me, much less step forward to maybe drive me to dinner, etc., back when I could at least walk 20 feet into a restaurant and sit at a table(can't sit up like that anymore).  Before POTS, my mom drove me most places, since we did things together.  After POTS hit and limited me to mostly staying at home, pretty much no one came to help or even visit. I even had a hip replacement while having POTS, and not even a meal was brought over.  Anyway,  I did continue to go visit my elderly parents at their home, mostly on Sundays when I wasn't just down and out.   I can remember my mom every year lately asking if she could take me to the local casino(I haven't been in  13 years because of the walking) for a birthday lunch for me, and every year I say I can't walk through the casino, and she says oh well.  And that was that.

Now my elderly parents have had health issues hit pretty hard this past year, and I do what I can in the sense that when I have good days at home and cook, I might cook extra and bring it over.  My sister does the most for them, like doctor's appts., etc., but not true physical day to day care.  I have an RN degree, mind you, but haven't worked in decades because of health issues.  Now with POTS seeming to affect my memory and cognitive abilities, I don't even want to fix up my mom's complex medicine case for fear I am accidentally putting two of something or whatever.

Anyway, I have lost my empathy for those that showed me none. That is totally out of my character, but I think I've hit my limit in life!   It makes me feel sooooo guilty, because I was the one in the family in my younger adult years who made sure to invite others over for holidays,  make an effort to attend their kids events, etc.  And now  they are stressed with elderly family stuff, and I have told them I cannot do anything, as I literally fall apart with any stress.  I have for years now.  My sibling is becoming passive-aggressive with me, I guess for not helping very much.  AS I said, they don't understand POTS and don't care to know about it.  My family has always acted like sick people were hypochondriacs, so I assume that's what I've had for so many years.

With POTS, life has changed.  I have adjusted to my extreme limitations, mostly.  I am still pursuing answers with different specialists, so I am not resigned to having it permanently.  But, I guess in my mind, I rationalize that if I've had to live with this pretty serious, life-altering health issue with no help(my husband is great!) from my siblings, then them having to cancel their golf game to handle moving my mom from the hospital to home care just doesn't phase me.  I just don't care that their social life has been impacted.  After POTS, all of that seems so trivial and I just don't care when they complain.

Sorry for the whine.  It gets to me about once a year.  But I hate that I just don't care anymore for people that have been uncaring in the past.  However, I have noticed I have extra empathy for the plight of complete strangers!  So I guess it just shifted!

 

 

[Guest KiminOrlando]

Good vent. You are not wrong. People who aren't sick much more than an occasional cold cannot comprehend life altering illness. I think well people get caught up in their routines to the point that they just can't deviate or everything falls apart. They over schedule themselves in an effort to compete with friends to appear successful. We build in so much flexibility because our bodies aren't dependable. We don't look sick. 

It is interesting that none of them stepped up to fill the job you used to do. Are you on disability? I am, so people who are supposed to be knowledgeable have adjudicated me 'sick'. I have taken family with me to doctors. I have passed out on them and messed up their schedule. Nobody really thought much about it until my Uncle got cancer and went on chemo. I take a low dose chemo for autoimmune diseases, so I started talking to him about Oncologists, ports, nausea meds, and white blood cell counts. Everybody was shocked I had been dealing with it for 10 years.

I think they think we are just tired. Until they learn.

I had to write up what my typical day is like for a disability review. Despite doing very little, it was 4 typed pages. I sent it to some family and 2 close friends to proofread. They were stunned. STUNNED. 

I think what we go through is just beyond most people's comprehension. Very few people even realize what the autonomic nervous system controls. Hang in there. At least you have a good husband. Maybe they will start to see what you really do all day.

[sue1234]

Kim,

My sister does have the family holiday gatherings now, but I guess I meant that I was always making an effort to be available for various things and be involved within the family, but it seems no one ever does this back.

I am not on disability.  My husband has a decent job, and I didn't work but a year back in the 90s.

I guess after no one in my family wanted to sit down and find out why I can't do anything anymore, I don't feel I want to include them in any of my health issues.  I feel like they haven't earned the right to know anything that goes on, because they showed no interest when it began.  I normally do fine with them not being involved in my life, but with the elderly parents getting to the point of needing to have life decisions for their care made, I feel guilty for not pitching in and am seeing that my opinions on their care carry way less weight because of my inability to physically help.

Since being limited, I see how so many people create drama for things that just are not important or unwilling to accept change.  So many gloss over reality, and want to keep life exactly as it is, at any cost.  I have no patience for all that anymore.  I just want people to be kind to others.  Sorry about the excessive rant.

[yogini]

xSome of what you described with your family could be a miscommunication or them not understanding POTS.  Sometimes you have to ask or explain what you're able to do.  If your mom offers to take you to lunch at a casino, just suggest another place that you can go to.     BUT even if they don't understand dysautonomia, your family should've known send you food or ask what you need after a hip replacement.    Pretty much no excuse for that.  

Take care of yourself and don't feel guilty.  You make meals for your mom, that is enough.