Sjogrens World Forums

Sjogrens Topics => Living Life In Spite of Sjogren's => Topic started by: P.Trish on May 29, 2014, 08:39:17 AM

Title: 'It's all in your head' Really?!
Post by: P.Trish on May 29, 2014, 08:39:17 AM
This 'dying on the vine' feeling through lack of face to face adult conversations is increasing and

the offers of outings w/ friends are becoming nonexistent. I do not blame them. Their lives are

busy and most of them still have careers.

The latest: my church sends out a monthly visitor to all its members. I only sporadically attend our

hour long Sun worship service because 3 hrs is too much.  My latest visitor brought over the address

of a web site that deals with depression, which she is convinced is my only problem, saying that it is

most likely all in my head, since I 'look so good'. Like many 'normals?'she suggested I get out more,

go to Target, etc  ( whoo hoo).

When I told her that it is difficult for me to cruise through BigBox stores, she was convinced that I

had agoraphobia. I have tried to use simple language to describe the physiological side of Sjogren's.

Thanks for listening to my vent - feeling frustrated, but I have an iron will & will figure it out.




Title: Re: 'It's all in your head' Really?!
Post by: Velcro on May 29, 2014, 08:47:45 AM
I'm so sorry that someone treated you that way.  They really have no clue.  Ignorance at it's finest.
Title: Re: 'It's all in your head' Really?!
Post by: meow on May 29, 2014, 11:26:09 AM
Even when they say all the wrong things, it helps to remember they are trying to say the right things.

I have often described SJS to people who don't know about it as similar to  RA or Lupus. Not exactly accurate, but it gets their attention, because everyone has heard of THOSE, and they know those are debilitating and can be very serious.
Title: Re: 'It's all in your head' Really?!
Post by: Joe S. on May 29, 2014, 11:27:29 AM
When I was having migraines the doctor told me it was all in my head. At that point he was right. A broken watch is right twice per day.
Title: Re: 'It's all in your head' Really?!
Post by: litliwlowa on May 29, 2014, 11:42:12 AM
P.Trish

I'm sorry you're experiencing that misperception from your church "visitors". Sounds like it's the same person saying those things? Consider the source.

Perhaps you can connect with a different church visitor who isn't so judgmental about things she knows absolutely nothing about?

I try to explain in certain settings at a level of the other person's understanding. My speech therapist last year didn't like it, calling it idioms whereas in my view it's more analogy to try to explain to someone else's understanding that no - this is not a "phobia" not this or that.

Sometimes the Keep It Simple Silly principle I find works best. But if I find a continuous subjective judgment from an acquaintance with no foundation in fact but that individual's own whatever - I shake dust off my feet and move on. People like that really don't want to understand, and what precious energy and quality of life you have is far to precious to waste on people who simply don't get it and really have no interest in "getting it". ;)

In a weird sense, even in our social contacts, similar to finding the right "fit" in our respective doctors, we find a few frogs along the way there too.

@Joe S. cute about the broken watch ;)
Title: Re: 'It's all in your head' Really?!
Post by: irish on May 29, 2014, 03:19:35 PM
I hate those kind of people. They have tunnel vision and that is about all you can say about them.My first thought is to really chew her out---but what good would that do because then she would say you are depressed with repressed hostility issues.

The nest thing I thought of was calling the pastor and asking him is there was a way to educate these people who call on the sick. We can't tell a book by its cover---ever!!!! He needs to know what this ding dong is saying cause talk about trying to drag someone down---she is going to do it and that is not what people need.

Then the thought occurred to me that just maybe in this day and age of increasing autoimmune disease---latest stat I read is that o1 out of 11 people will be struck down with autoimmune disease in their lifetime--- some health professionals could come in and do a little seminar on health and chronic disease. This could include autoimmune disease and might open some people eyes. You might even offer to give some input into your quality of life and how it affects your socialization.

We all know that chronic illness affects our social life. We want to be social, but we don't feel good, we are weak, we can't concentrate to carry on conversation and sometimes we are just overwhelmed by the noise and crowds. We aren't crazy---we are sick!!! Good luck .irish
Title: Re: 'It's all in your head' Really?!
Post by: P.Trish on May 29, 2014, 05:25:26 PM
Thank you all for your insights and wisdom.  This site is a life saver.
 Irish, for over a year, I have been considering writing a letter to the pastor and/or other church organization leaders to offer some suggestions on compassionate care & understanding - not just for me;  there are - of course - always others who could benefit from some common sense & sincerity.  I know I need to do what I can for others and I also know that it is getting harder (physically) to be involved.  I feel like I am reaching  the bottom of the well, but like I said before - my will is strong.
Title: Re: 'It's all in your head' Really?!
Post by: MarieB on May 31, 2014, 10:27:20 AM
Geez, that person sounds clueless.   ???   I hate it when people are so sure they can 'fix' me.   

I'm fairly tolerant but when they go beyond 'clueless but caring' I say 'I'll be sure to tell all my doctors you think they are wrong and pass along your new diagnosis.'   That works pretty good. 

Title: Re: 'It's all in your head' Really?!
Post by: litliwlowa on May 31, 2014, 01:11:31 PM
Quote
for over a year, I have been considering writing a letter to the pastor and/or other church organization leaders to offer some suggestions on compassionate care & understanding - not just for me;  there are - of course - always others who could benefit from some common sense & sincerity
I am reminded of something similar I encountered at a church where I was on the worship team (singer/soloist). I ended up leaving the church, shaking the dust off my feet.

Good thing too. I later found out the pastor was KKK leader and my dear FL friend (a person of colour) was invited to Pastor's home about 3 years ago and all that related KKK achievements and all were hanging on Pastor's walls in his home. WOAH did that blow my mind, especially as most of the church membership were of colour, and I had actually heard the Pastor's "testimony" a couple of years before that wherein he alleged he put all that life behind him decades before and went into the ministry. Um... OH REALLY??

Generally speaking, the "leadership" sets the tone for the church. I'm not sure a letter would have the desired results.

However, here is a thought. Are there others in your church in similar situation, even tho maybe their respective medical situation may be different from yours? Even to connect in that way with one or two who CAN relate even for a short once a week get together or short outing or visit or even a phone call would benefit both on the social aspect. Just a thought.

If pastor or church organization leaders need to be taught compassion and understanding, presuming of course they are all adults? Then there is in my view a deeper problem at the root.

But if to help you to feel better about the situation, to be able to express those concerns, by all means go for it. Sometimes people lose sight of the "missionary field" in their own yards. Common with many churches.

Title: Re: 'It's all in your head' Really?!
Post by: P.Trish on May 31, 2014, 02:40:05 PM
litliwlowa, great idea about contacting other church members who have health issues.  Wow, your

story is frightening - good that you are out of there!

You know what they say about 'everything happening for a reason'. Even though some

days it may be challenging to find a 'reason' for this awful disease, I Do know it has

taught me to do What I can for others, When I can.

- and it is true that a letter is not likely to change a person's (or members of their congregation)

  compassion/understanding towards those who are in need.
Title: Re: 'It's all in your head' Really?!
Post by: litliwlowa on May 31, 2014, 03:46:30 PM
Quote
You know what they say about 'everything happening for a reason'. Even though some

days it may be challenging to find a 'reason' for this awful disease, I Do know it has

taught me to do What I can for others, When I can.
Another thing about chronic illness, we take nothing for granted.

It's an awful disease - true. But when we have those "no flare days" and can do a little more than usual, it has all the more meaning to us.

Yes that was an awful church. The next one was a little better. I got to solo more, that is until the music minister's mother (who was quite an accomplished musician) asked me where I had been hiding my voice. Then music minister came up with all manner of excuses. People in church kept asking when I was going to solo next, and all I knew to do was suggest they get with minister on that, as I sure wanted to sing.

My first solo in that church was "Word of God Speak" I love that song. When finished it was so quiet you could hear a flea toot.

Anyway, there are lots of churches out there and as our needs change, sometimes it's best to find another church home. Life is too short to stay where not welcomed. ;)
Title: Re: 'It's all in your head' Really?!
Post by: slccom on May 31, 2014, 07:07:49 PM
Well, if you  ever need to clear the church in a hurry, do let me know and I'll sing for them. ;D

Sharon
Title: Re: 'It's all in your head' Really?!
Post by: P.Trish on May 31, 2014, 09:42:18 PM
Sharon, you're funny!

litliwlowa, I am so glad you brought up singing! I have sung professionally with a trio, as well as solo.

My dry issues/fatigue have affected my voice & I no longer sing solos. I was a bit depressed

about it. I slapped myself upside the head as a reminder that that it is not the 'end of the world',

then (after I started this thread & received some excellent advice) joined a choir at a friend's

church. Rehearsals don't begin until August - motivation to keep going :)
Title: Re: 'It's all in your head' Really?!
Post by: litliwlowa on June 01, 2014, 02:58:23 AM
Quote
litliwlowa, I am so glad you brought up singing! I have sung professionally with a trio, as well as solo.

My dry issues/fatigue have affected my voice & I no longer sing solos. I was a bit depressed

about it. I slapped myself upside the head as a reminder that that it is not the 'end of the world',

then (after I started this thread & received some excellent advice) joined a choir at a friend's

church. Rehearsals don't begin until August - motivation to keep going :)
Well that is wonderful you've joined a choir!!

I can relate about the voice and singing. My five octave range went to one and a half octaves after total thyroidectomy, from mezzo soprano to low alto. SJS merely added insult to "injury". But we adapt, you know? There are always alternatives to creative expression. ;)
Title: Re: 'It's all in your head' Really?!
Post by: Carolina on June 01, 2014, 08:12:17 AM
What I've found about people, in general, is that most of the time they are super involved in their own world view, the 'way they see things'.  It's only human, actually. 

Except for some really twisted people in this world, most people 'mean well' from their own point of view.

So in their own point of view, when you don't want to do something that you' look like you can do easily' you 'must have a problem'.

(Now actually everything IS all in our head.  The entire world is processed through our brains, including all the interactions of our physical system.  But that's a different discussion, more philosophical or theoretical.  If you ever read the work of Oliver Sacks, you begin to understand that.  I recommend his books, just for interesting reading).

But back to the 'but you don't look sick' so 'you must be crazy' point of view. 

There are many reasons for aversion to illness.

1.  Ignorance of the the workings of the human body.
2.  Fear of illness in others.
3.  Denial of mortality and fear of death.
4.  Superstitious beliefs and practices around health and wellness.

And so on.

Key point.  Smile and say:  "I'm doing the best I can, thank you for your concern.  I have several medical professionals who advise me, and I appreciate your interest."

Then learn to LET IT GO.  Let them whirl.  When they are in your own family, it can be really rough. 

I always recommend "How to Be Sick" by Toni Bernhard.  It's really how to live in this world with some sanity.

Hugs,  Elaine



Title: Re: 'It's all in your head' Really?!
Post by: P.Trish on June 01, 2014, 08:48:21 AM
Elaine, I am reading "How to Be Sick", by Toni Bernard. It is very, very helpful. My rheumatologist

is recommending it to his patients.

Thanks for the Oliver Sacks rec.  I'm going on Amazon to order it
Title: Re: 'It's all in your head' Really?!
Post by: Cassi307 on June 01, 2014, 10:45:43 AM
P. Trish
Remember to use the Amazon link for the forum when you order your book.

Just want to let you know that there is a member of my church who does what is mentioned in this topic. I just had to go back on prednisone for the third time to manage my symptoms and then I got hit with a five day asthma attack, while this is happening my teen son gets suspended from school and was facing expulsion. She said she looked up what I had and it is only something that will make me uncomfortable and that I am not going to die. That I should just pray and everything will be fine. I wound up snapping at her and telling her that unless she walked in my shoes she should not be judging me. I don't want or need someone to minimize my feelings or experiences when I am in the middle of a crisis.

In her own mind she meant well. She is someone who will help anyone in need but she answers everything with a Bible verse when what I need is someone to say I am here for you and how can I help. As Carolina said learn to let it go. I have been caught up in an unending cycle for over a year and trying to cope on my own since I don't have family. I know that I need to surround myself with supportive people. Think I will invest in the book that was mentioned. Thanks.
Title: Re: 'It's all in your head' Really?!
Post by: P.Trish on June 01, 2014, 12:37:56 PM
Cassi, thanks for reminding me about the link - amazon is my 'go to 'store for just

about everything.

Thanks for sharing your story - I am sorry that you are trying to cope on your

own,  I have family, although they are scattered far & wide, but I do have a good

husband (he tries :) to deal with my foibles.

Yes, the "How to be Sick' book is a keeper.
Title: Re: 'It's all in your head' Really?!
Post by: Cassi307 on June 01, 2014, 02:35:23 PM
Thanks P Trish. I just came back to the site to delete my post because it was more of a vent and I am sorry. My frustration level is high and I feel like swinging at anyone who comes near me. Not a productive coping mechanism. I don't want my issues to take away from someone else's topic so I just want to apologize and leave it alone w/o further discussion. Again, I am sorry.