Sunday, April 4, 2010

Difficult Things To Cope With If One Has Lupus, #45903

I still have such a problem with being misjudged...and there are so many aspects to it that even if I didn't have lupus brain going on sometimes I would be overwhelmed.

We are supposed to be mind-readers.  To be able to tell which people want more information about what is really going on with us, and at which times...and which people, and when, don't want to hear another word about our ailments.

But one problem is that if we DON'T explain...then we can get misjudged. Lazy, crazy, stupid, unreliable, unmotivated, not trying hard enough.  Whiny, moody, bitchy, self-centered.  The list just goes on and on.

And then if you are one of us lucky ones to have some episodic brain involvement, and maybe this can make you language-impaired at to explain all this in just the right amount and with just the right words, in perfect sync with the person(s) you are trying to relate to...?

And then there are things like irritability and depression.  I have to apologize here and now to the many many people in service positions I have exploded at...because I was in horrific pain and there was no one else to go to the pharmacy or the grocery store or wherever for me, and my frustration threshold was below zero.  No, no one should be out trying to function with severe pain or nausea or etc.  But I think those of us who are sick the way I am become isolated so there is not much social support.

Depression is ill-tolerated by many people.  I get exhausted now just thinking about how many I have tried to get to understand that sometimes it is brain chemicals.  Anti-self antibodies DO cross the blood-brain barrier.  And then there are the mood altering effects of medications like prednisone.  Some of us are running really hard most of the time to remain in place and guess what, sometimes we can't keep it up.  And I didn't even mention the depressing effects of having one's life changed in so many ways by ill health and invisible disability.  Sometimes I want a t-shirt which says CUT ME SOME SLACK.  But most of the time I just feel despair when I think of the gap between what I know to be my experience...and what I know to be how hard I am trying, all the time...and what people think of me and my "negative", "eeyore" moods.   Even when I'm not depressed the chasm between my reality and their misjudgements of me can be so great that I just want to give up even trying to bridge it.  Hate me if you will; I'm too tired to defend myself.

So isolation becomes a problem but also in some ways a solution.  Isolated...because people get tired of us.  Or they don't believe us when we say it is the disease(s).  Isolated...because we are afraid of being hurt again, of being misunderstood again, of being misjudged again, of being hated again.  And so we give up on people.  Or on life.


  1. I live most of my day at home, inside a 3 bedroom apt. Husband works (thank G-d he has a job) and son is in training. I'm isolated most of the day. It is only now that I am reading your experiences and other Lupus people's experiences that I see my symptoms of brain fog, irritability, etc., as part of Lupus and not that I'm going mad.
    Big hugs. You can be irritable with me any day. I'll uncerstand

  2. Thank you for sharing about the blood brain barrier manifestations of the disease. Once those evil anti bodies cross that barrier, our lives are AGAIN altered for the worse. The CNS manifestations have hit me the hardest of all the organ issues I've experienced in the last 10 years! I too, suffer from recurrent attacks of "Eeyore moods" and so very much relate to your experiences and thank you for being so candid.I too am struggling financially (ie poverty level with a child) as a direct result of my illnesses. You rock, Beep!

  3. Ditto everything Kim Said. Having CNS- lupus, FM, and APS has undermined every aspect of my life. The hardest part is the paradox, the alternate reality of what we are experiancing compared to the mistaken perceptions and assumptions on the part of others. I think I would have gone completely batty, even doubting my own mind, if not for the connecting with fellow survivors through blogs and social networks. My CNS has really robbed my ability to communicate, but each time I come across a blogger who articulates my feelings I am thrilled. Sometime I prefer isolation over the frustration of dealing with people who can't relate to my "weird" symptoms. A combination of the biochemical changes to my brain and the trauma of all the stress and loss has changed my personality. I have lost every thing I scraped and saved for. Lost my 2000 square foot 2 master bedroom 2 1/2 bath house after never being late on a note for a decade to live in subsidized 900 sqft apt. Unable to drive. Just enough money to pay rent, utilities and having to depend on charity for anything else. I can't even afford to by clothes for my son. Yet it seems like people do not understand my grief. My poverty status changes the dynamics of old friendships. Most of them are upper middle class now with successful careers, married with young children. I'm single, jobless & broke. I am not really interested in talking about fashions and vacations. I hate tagging along to hang out when I can't pay my tab. Their problems and worries seem so superficial. And I can tell they seem inhibited by my illness and poverty trying to be overly careful not to say something that may make me feel bad. They mean well but I feel a condescension in their efforts. Okay, I feel better. Got that of my chest. LOL =)

  4. Thank you for this. I was only recently ( six months, is that recently, seems like forever though) diagnosed though the doctors think I must have been 'living with lupus' for about a decade now, and you could've been talking about my life. I get frustrated on a daily basis with having to deal with both this disease and the people who don't know how to deal with it themselves. Hugs.

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  6. My 11 year old daughter is finding all what you said to be true at too early an age.

    I blog about her New Lupus Battles at:

    we are new to learning and understanding all that is suddenly happening to her. At least she and I can relate to what u have said here.

  7. Thank you for a lovely post on the frustrations of getting along with a half-broken brain and body. If only other people understood ... it makes me wonder what they see on the outside looking in. The joys of dealing with an invisible illness in the public area combined with the stigma of not having the obvious physical dependencies like using a wheelchair, cane, walker makes wanting to deal with the outside world undesirable. I try to explain that my emotional elasticity is at its limit and that I can only take so much before I stretch too far and snap like a rubber band. The other day my 7 yr old step daughter said she wanted to have my job which she then explained was to relax. How little she knows that when I am simply standing or sitting it is a struggle to be functioning somehow despite the pain or the brain fog. It's not fair, it's not right, but it's where life has put us and we must learn perseverance somehow. With practice comes perfect right? Kudos for the post.

  8. 過去的事早已消失,未來的更是渺不可知,只有現在是真實的..................................................

  9. 一切與生俱來的天然贈品,時間最為寶貴..................................................


About Me

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I've travelled the distance from an Ivy League college to decades of enforced poverty--because I've needed to qualify for government health care in the U.S., since being diagnosed with lupus at the age of 23. I have a personal blog at that I've had so long I'm probably stuck with :) My other blogs are here on blogger...