Monday, February 15, 2016


The Problem With Being Sick

"You`re sick.

But that is not the problem.

The problem is that you had the audacity to be Chronically Ill. And that simply is not socially acceptable.

People want to know when you will get 'better'.

They wonder why you 'don't look ill'

They want to know when you will be ready to work.

They want to know how it makes 'sense' you can do things one day, and not another.

They don't want to work with you. Certainly don't want to accommodate you. Being forced to leaves a bad taste in their mouths. Why should they have to conform when clearly you can't 'handle it'?

And why do you decline all those invitations? Or never get any plans done when you say?

Why don't you conform to what a sick person should. Do everything you can to get better and you will, don't you know that?"

This is so true...

I have been told....

"You need to push yourself"

"I would rather be dead then live at your weight."

"If you were really disabled, you'd already be dead, no one is that sick for 20 years"

"If only you lost weight and ate right, why don't you want to lose weight?"

"God will heal you if you have deliverance or overcome your wickedness."

"God has a plan for your life and that includes getting better."

"You have nothing to show for your life, your life has been a waste." [probably some of you can guess who said that one]

There is this judgment out there for daring to get sick or in having any health problems. I used to think being fat earned me this illness derision but have gotten around other disabled people of normal weights who get the same garbage unloaded on them. I believe life has gotten harder for the disabled especially with New Age and other beliefs growing that illness is a self-caused and chosen thing. The prosperity gospel types certainly see illness as something arising out of a person's "poor choices" or "sins".

It took me years to figure out how people were seeing me. By one spiritually abusive person, I was seen as "cursed", church people saw me as having some deep secret evil for having such rare and deforming illnesses---remember how much I weigh, I do not look normal or even fit the criteria of normal. Many in the church community told me if I became a good person and released "negative" spiritual holds, that my body would become a good and normal body.  When I was not a Christian, people in the New Age community and other beliefs told me I must have been wicked in a "past life" to be so chronically sick so young. Others told me my karma was poor and I was paying for the evils and ill deeds in my past "incarnations". I could never get a break, the core message was being sick was my fault and no one else's. Supposedly I had chosen everything from bad lungs to out of control weight.

My family used my illness as one reason to abandon me and basically keep me out of the family where I wrote about them rejecting me first. This was done indirectly expecting a woman who was getting home nursing care at times to always be the one to do all the traveling and no one coming here. Sadly when sick, many people patronize you or only see you as a "duty" or you can become a "project". You are not even seen as a human being then but someone who remains as the "other". Churches are notorious for some reaching out the disabled and down and out and not seeing them as an equal person. Others still judge you on visible disabilities vs. invisible. So you're very overweight, they know other very fat people your size who can hold jobs and walk in the mall, why can't you? Why can't you breathe in the middle of August or January to go outside and travel when April was just fine?

It's tough, one gets tired explaining here too. With illness JADE comes in handy too.

Note: Fixed link on this one 2/18--


  1. My stock answer is
    Remember me as you pass by,
    As you are now, so once was I,
    As I am now, so you must be,
    Prepare for death and follow me.
    Last time I checked no one gets out of here alive

    1. I added a bit more to this. I agree, they will be where we are one day even if it comes to them at age 95. Everyone weakens and sickens and dies. No one escapes death. The prosperity types seem to think they will live forever. One thing narcs hold in common in a narcissistic society is this idea they will never die.

  2. When I get sick the whole rigmarole that goes on in my head is tough. Mother hated when I got sick, blamed me for it, told me that I did something wrong. Otherwise I wouldn't be sick. When I grew up I never told her when I got sick, it was something I did not dare to do. Its funny for she was always trying to make me sick, telling me of even how my skin was the wrong color, or something like that, CONSTANTLY. This drove me nuts.

    Truth is, we are just for supply. Why would anyone care when all they want to do is eat you? That's what I read from the Anna V site, and then I thought, "oh that is why."

    And when I grew up she really wanted me to die, she was trying to bring it on. Just like if someone has an old pet or car they don't want, they try to sabotage it. I hope I'm not being too morbid here, but this is what I learned.

  3. We are kind of like prize fighters no matter how big and bad we are eventually some one will best us. And if it's not from another human it's from entropy

    1. I agree. One thing the narcs don't get is there is always someone bigger, badder and richer then you. Old age comes to everyone too.

  4. I was thinking today and I think I am putting my finger it. Being disabled sort of hits the same conscience switch as breaking the law. I always feel like I am speeding through a school zone and there is a cop in the bushes just waiting to pull me over. When I qualified for disability I made a welfare remark to the case worker who was very kind( I know they get a bad reputation) but mine were really nice but he quickly corrected me saying this is money you worked for and contributed to your whole life.

    1. Hey they shame the disabled constantly. That may be part of it. It's getting kind of bad too, where some parts of society seem to want to label us all as bums and more. As late as 2002, I was trying to finish a paralegal degree but just got more ill and the lungs made things even more impossible. I was still expecting to "get better" back then even even until I had the Lipedema diagnosis, always had this dream the doctors would find the pituitary tumor or whatever else was wrong with me and CURE ME. There is some loss there, and getting old and some of me is even in shock I lived this long, but at least on new lung med and if I stay inside, I am not gasping for air, all the time like I did for years.

      I would have rather had a good career, and I think back on those good teaching jobs I lost over failing medical exams in the 1990s and wonder what kind of life I could have had with a stable income and medical care, and it's like they set up endless hoops to ruin me if that makes sense.

      We all tried our best, no one chooses to be disabled. It's tough business. I wish my body would have done what I wanted more. I even had to let go of minor volunteer work I used to do more of years ago, just the fatigue and more....


  6. I think at the end of the day I hate the correct notion that for me this is as good as it is going to get. It's all down hill from here. No stellar career is around the corner. I am not going to be a rock star. I am just sick and will get sicker until I die. And it also looks that what passes for intelligent life on earth is as good at it's going to get. I used to lay on the hood of my truck and look at the stars wishing that one of them would start moving toward me and actually be aliens who will pick me up and take me away. Not Happening!

    1. I feel for you. Me too. As late as 2003-4, I held onto the notion I was going to "get better" and "recover my life" and well it didn't happen. I really believed because of my pseudo-Cushings diagnosis all it meant was the doctors finally dealing with whatever rare hormonal disease I had finding the tumor doing it all and CURING me. Finding out I had something incurable was devestating. Sure you feel the same way.

      No stellar career for me. I told husband to publish the few comics I've done as a zine upon my demise if I didn't do it yet. I had all these dreams even during my worse times some still are there but it's like old age is catching up on me quick and just surviving has been so hard. I need more time. I got short of breathe typing something just now and made me laugh to husband, sheesh I'm already in bed as it is. At least I live in reality now, no promised cures or deliverances coming in this life time. Will try and enjoy what I can, time with husband etc, just wish there was a bit more of the green stuff to do what I want.

      LOL about what passes for intelligent earth. I dreamed of my own drop-outs and finding a new society to exist in outside of this brain-dead one. I know funny to dream so much.


  7. People with disability have been told the same thing about miracles. I remember several people telling me that if I was a good Christian, God would fix my ears so I would hear better. When I told my godfather about what these people said, he told me to stay away from those who would work against me if I don't get a miraculous healing from God. He called these people ignorant fundies who have cold hearts. His sister has Graves' Disease so he did not like one woman's claimed that God healed her from her Graves' Diseases. My godfather and I believe that this woman had psychosomatic illness because her obvious deep-seated anger led her to have health problem.

    I agree that nobody choose to be disabled or sick. Unfortunately, some people claimed that we chose to be disabled or sick in our previous lives or that God planned for us to be sick so that we could inspire others. Or that we are their to tell others how we were "courageous people who endured it all...." Or used Joni Eareckson Tada's story as an example of how Christians with disability or illness would act or think. Somebody told me years ago that Joni was involved in a false church or Christian ministry. So she will not like people like us. She might be a narc. I remember being angry with something she said about God, being a Christian and unanswered prayers from God. She grew up rich with a loving parents and a strong father who gave her the best life possible. When she was paralyzed in 1967, narcs came into her life. I remember being annoyed with some people in her post-paralysis life when I watched "Joni" movie. She had some narc nurses, counselors, and Christian people making her life a living hell. She was forced to be a narc herself in order to get help. Her parent had a hard time dealing with narcs who worked with Joni. That's what I remember. Joni sounds like a narc in some of her book or maybe she had narcs in her life in order to survive. It is really sad. I am unsure if she is a narc herself. Hope you remember stories about her. She has money and connections from her father, so it helps her from being discarded by narcs. I know she never walked or moved her arms again because God did not give her a miraculous healing. I remember she prayed for miraculous healing and that narcs told her that she felt sorry for herself.

    Maybe some people have been thinking about Joni Eareckson's story when they see your disability. :(

    The article you posted on prosperity gospel is disturbing.

    1. Yes the disabled are told, be a good Christian and God will cure you into normalness. Chronic illness is a huge enough burden to bear without being shamed by various sorts who have had easier lives and consider themselves "blessed" while you are "not blessed" supposedly from being wicked. They ignore so much of the Bible like read Luke 6, and Jesus is talking about spiritual and eternal blessings.

      I am glad your grandfather warned you against those people, and told you the truth. I have had to remove myself from people who demand false miracles and false "self improvements"-the Fix-It queens I talk about to regain my emotional and spiritual bearings. I don't want anyone trying to fix me anymore. I am nearing 50, I am an older woman and need left alone to live in peace and have a few happy years before I die.

      Graves Disease is pernament. Yes I tired of people who told me God's miracles would allow me to throw away my Synthroid for good from the other end of the thyroid spectrum.

      Yes they will tell you New Age things like anger or repression or unforgiveness or even being abused, made you sick with the underlying message, "it is all your fault".

      I hate being disabled, no one chooses it. I just took my lung medicine while laying here and I'm inside today and havent seen outside of apt in three weeks. It can be a very painful life. My husband is really sick again too, bringing more worried. Right now the last thing I need is people giving me prosperity demands and self improvement demands.

      Yes I had a friend who claimed, who is now an ex-friend, that I had to be very evil in my past life to be so poor. She told me I must have been a criminal or a very wicked person for karma to make me have this life. She made me more depressed telling me these things and I counteracted her with scripture saying the bible says we only live once--there is an exact verse that says that, and telling her I did not believe in karma. If you think about those philosophies, there is a reason New Age beliefs are so popular with the wealthy, they think they are good people having the blessings of this world too when the Bible says otherwise. Why did I need shame like that? I didn't. It takes away empathy and compassion.

      Joni, is involved with ecumenical things I disagree with and false preachers but it is true she had a wealthy family and other resources many wheelchair people would not have. I worried too at the example of very wealthy disabled people who become examples or "INSPIRATIONS" for all of us to emulate. They are told never to complain, always be positive and the expectation is that one have some extreme talent or skill. IRL, even if you have a talent, disablities make it hard to carry it forth. [My comic went far slower then I wanted due to ill health, it is more physically demanding to sit up and paint and ink] and I have not painted as much in the last 10 years slowing down due to health and other things. I spent 5 hours a day on medical junk. Online I jump on and off and lay back while on here, even getting tired and short of breathe typing. I made myself take a walk yesterday because I lose stamina so fast on that end. There is this pressure for the disabled especially if you have visible disabilites--my hearing impairment is visible too that you be "more special" and "hard driving". Its like we always have to prove ourselves. I felt this as a 500lb woman, that I had to be better dressed and keep it together more just to gain the acceptablility that others naturally got.

      I saw elements of her becoming narcish too and read her books, and she had many people around her giving narc and false religious messages of false cheer, and proving herself to the world. I wonder now since the world has changed since the 70s and believes even more in karma and blessings for the "good" how she deals with never having promised miracles.

  8. If I was still with my first wife being hearing impaired would have been a blessing. Unless it led to us staying together a little longer.

    1. LOL yeah I can see it being a blessing in some instances. I know there's a lot of insults I probably missed in the later years, narcs never will speak up for a hearing impaired person.

    2. LOL yeah I can see it being a blessing in some instances. I know there's a lot of insults I probably missed in the later years, narcs never will speak up for a hearing impaired person.