Good question. As someone who has a sensory intergration problem realted to to an ASD and as a person who suffers from chronic pain due to various complications and oportunistic infections caused by HIV I encounter this problem not just with Family but also doctors and others. 

The root of the problem seems to be that unless one can see and understand the disability, people think you are just not trying hard enough.  Yet it is they who have put no effort into understanding my conditions. 

I believ the problem is worse when one has MS or other conditions which affect how the brain process information.  I thought by telling people about my ASD that they would understand, but than they think it is a mental illness, and in our society mental illness is blamed on the person.  I know one administrator at the hospital who hides having MS becasue she has seen other people with MS not only be refused assistance in overcoming the barriers that MS causes, but end up being targeted for disciplinairy actions based on the believ that anyone with a neurological condition is unfit to work, or particpate in society.

I hope to see some good suggestion here so I can add a link to http://www.accessiblechurch.ca/  This is something that is not only an issue with families, but in churches, the community , and the work places.

I have friends with macular degeneration, chronic pain issues, fibromyalgia, chronic fatigue, MS, Parkinsons, PSP (Dudley Moore suffered from this)... some have shared their illness and others have not.

I cannot say I have ever heard anyone say "what's wrong with you" or "hurry up". I cannot say I have ever heard anyone discussing whether someone was making it up, milking it or lazy. It may be because we are such small communities you cannot be rude to __ without everyone hearing about it...

For me, that is what it is. Rude. It is not so much a matter of health as much as it is a matter of manners. Saying "why don't you hold onto stuff" or "watch where you are going" is rude or insensitive, period. I do not care whether the person is blind, was being inattentive, is clumsy or just made a mistake. Whether the person they are saying it to is healthy or ill does not change my mind.

People can be rude and insensitive. When they are, someone should call them on it. They may not know they are being rude. They may never have thought about it. They may also be a rude ass.

Rude or inconsiderate people  people actually may just be in the minority.   Some people who refuse to accomadate and accept others who are different are also just too lazy to do so. . Many also do not care about anyone else, let alone a person with a disability. And others also have disabilties that affect there memory and so actually forget that so and and so, is not the healthy 18 year old they once knew, but a person facing a disability.

I should say that I see a difference between someone being rude who knows better and  has no excuse and someone who has their own difficulties, disease or disorder....

I have been around children who have conduct disorders because their parents were inconsistent and the kids do not know how to react (like being antisocial). I know people can have impaired social interaction,,, Alzheimer's patients and those with dementia or those on the autism spectrum can have no internal filter or lose their inhibition.

There are exceptions to my rule of "I don't do rude".

But still what do you say to these people. . I have wanted to say "F... off you inconsiderate fool" , but somehow I believe that would just reflect negatively on me and not provide me or anyone else with peace of mind. 

kaythecurler .... thank you for starting this thread.....

I had an accident back in June 2009 that left me with some minor damage to my spinal cord.   Although I look healthy and function pretty much normally there are still things that I can no longer do.    There are times when that diminished ability is interpreted as laziness.

I am not complaining ... just reporting.   What it has done is make me more aware and sensitive to the probability of similar hidden problems with others.

One thing I have done that I hope is helping is that when at grocery store checkouts etc when I cannot lift something although it appears that I should easily be able to .... then I tell the clerk of my condition.   I don't apologize ... I inform .... in a gentle and positive sharing manner.   Every time the response has been most helpful and gracious.   I then tell them that there are others like me that have hidden issues and they are shy and sensitive about it and will not say anything.   I ask that they remember that and when something doesnt seem quite as expected to leave a bit of space and understanding just in case.   I do hope that my speaking up and sharing makes it a bit easier for someone that just cannot.

I do hope that sharing this experience and approach will help others to speak up and promote some awareness and understanding.....

Hugs

Rita

For me, saying "f off, you inconsiderate..." to someone with diminished capacity or ability, disease or disorder.... makes me what I am complaining they are. It makes me an inconsiderate fool.

My mom, as a bipolar, often acted inappropriately or rudely. It was part of her symptoms. I had many people tell me how rude she was or inconsiderate. So, I tend to treat folks like I want them to treat me.

My approach is to say, "you do know ___ has____right?" and hope they will then understand or be more compassionate. If they do not know, they are informed. If they do know, they are informed others know and also can see how they are being treated. It is not to shame them. It is to inform them.

I have said, "you do know that irritability is a symptom" or  "it can resemble someone who is drunk, you know". I have one an occassion or two, knowing the person I was saying it to rather well, said something smart assed like, "well thank you for displaying such understanding and compassion, it is breathtaking" or the much more direct "you are an ass".

It happens.  I've slowed down considerably in the last while.  Seelerman sat in the room while I discussed my symptoms with the neurologist.  You would think he would know.  And on one level, he does.  But he has told me 'Hurry up."  "What's keeping you?"  etc.  He has always been a fast walker.  I walk slower now - I can see him getting impatient.   I am finding my Parkingsons hard to accept.  I think he finds it hard too.  We would both like to pretend that it isn't interfering with my life, that is is just a tremor in my arm, and that I can still do everything that I used to.  Mostly I can.  But gradually it is slowing me down, making me tired, making ordinary things hard.

If those closest to us, who should know, get impatient, I guess its natural that strangers might wonder why we take a bit longer getting out of the way in the supermarket, getting out our debit card, putting our wallet back in our purse.  Why do we want the chair with arms when other people are sitting on straight chairs?  Why can't we share a hymn book (because it will shake so bad you couldn't read it)?  Why do we take two trips, rather than carry everything at once? 

I don't want to be treated like an invalid.  I want to do as much as possible for myself.  I want to be independent.  Just be patient.  Give me time.  Don't worry if I look awkward.  Don't be embarassed if I ask to have my coffee in a travel mug with a cover if I'm drinking it standing around at coffee hour. 

I still have a few good years ahead of me.   I'm going to live them. 

i think you've touched on something very important seeler, and that is many in our families don't want to acknowledge that a Mom, or Dad, husband or wife may be aging and along with that comes the inability to perform the same way one would when they were younger. I see it many times with Alzheimers. So many children that don't bother visiting because, "that's not my Mom (Dad), that's somebody else" They're uncomfortable with the power shift, especially if that person was the glue that held the family together. I don't see this situation happening so much as being "rude" or purposely cruel but more out of fear.

Kay, sometimes I find a simple, direct response works best.  Something like, "I'm sorry, but my health won't allow me to do that" or, "I really should not be doing that, as it is very deterimental to my health".

seeler, thank you. Your post and the response it got brought tears to my eyes.
 

I know of a church, in discussion about an elevator (expense and opposition), who invited someone from that congregation to speak. This person stood shaky and tall and said what church meant approaching very dark nights and losing all one once held dear. The result was they would find the money from somewhere and they did.

Another congregation was "used to" 9 am services. "It has always been..." was how the conversations had always went. The majority voted and it stayed 9 am another year.
When the discussion of maybe moving a little later came up once again, this time, people spoke. Someone bravely said, "I cannot leave the toilet at that time of the morning". A man said, "my medicine for Parkinson's has not kicked in yet and I cannot get myself dressed yet". Another valiant soldier in the war of age cried about missing everyone and that getting his fragile wife up and to church that early was becoming impossible. You see, she came looking lovely every Sunday they were there. She looked the same, more fragile perhaps. He gave them the behind the scenes... He woke her in the curlers he put in the night before and helped her to the washroom, he took off her night diaper and washed her and re-diapered her. He would get her dressed and fed and comb out her hair and she would arrive the same woman she had always been. It was getting harder and harder to get done by 9 am. It meant that as he lost the most important thing in his life he would do it alone.

Services are now at 10:30 and better attened than they ever were at 9 am, I am told better than the 9 am decades ago even.

That is what we need regarding disability, openness and vulnerability, a willingness to be seen... a willingness to have a face to put with an issue... to tell our stories.

How the church responds will suprise us. I have faith in us. After all, I know what happened a few decades back when a few brave souls were open and told their stories.

I think that sometimes . . . when a person, even someone close to you says "hurry up", "be careful", "can't you be more careful", or whatever to someone who has any kind of an illness or disability, it definitely is rude.  It can also be there way of saying and feeling . . . "I don't want things to be this way - for this person or for myself" . . . and . . . "If I just say it, they will stop doing it and it won't really be that way".  In a sense a denial, a wishing things were different, a wanting to ignore, a wanting to change.  Doesn't make it right, still is rude, but in some instances they could be coming from a fearful place within.

My child falls, drops things, bumps into things, breaks things, messes up things, spills things etc.  I quite often say "be careful" "pay attention" "slow down" etc. etc. . . . knowing full well she is as careful as she can be and is doing the best she can.  I know this full well . . . I just worry about her, I want things to be different, I don't want her to have accidents, I want her to be alright.  There is a part of me (although I absolutely know full well the reality) that if I say to her "be careful" when I leave her, that that will some how magically stop her from having an accident.

Beloved,

I can relate to what you say about your daughter, because I act in much the same way with Mum.

As her memory and skills decrease I find myself bossing her around in a way that was never part of our relationship.

It's definately fear related......

I fear for all the things that could happen to her.

I fear for the little girl that remains forever a part of me that still, at times, wants guidance from her Mum.

I guess what I'm trying to say is I fear the changes that I know are inevitable.

She calls me "Miss Bossy Boots" now as much as she calls me by my name. Once she was so annoyed, I burst into tears.

Then she hugged me and said, "I know you're just worried about me."

She's still my Mum.......

Seeler,

My brother-in-law has Parkinsons - so I relate to how frustrating it is for you. But, you have a good mind, lots of determination and courage, so I'm confident you will find a way to live with the adjustments you may need to make.

(I just gave you a big hug - I hope I didn't squeeze you too tight!)

Sometimes "be carefu"l means actually be careful!  I know some people who have developed a disability over time or are just aging try to do things as before, when more care does need to be taken.

Thanks SG.  Thanks Pilgrim.  Knowing I have friends who understand, including virtual friends, helps me to cope.  Most days are not too bad.  I bowled 62, 78, 78 in three strings today.  Not good - but not bad either.  I enjoyed the afternoon with my friends.  And I cooked up enough meals in the last few days that Seelerman will have something in the freezer for almost every day while I'm away at seminar.  And I'll find a way to manage there too, including asking for help if I need it. 

This is such an important topic kaythecurler. Generally I would like to think that people could be kind, patient and considerate regardless of what characteristics or ‘diagnosis’ someone has. Unfortunately that is not always the case. It is not even the case when someone has visible challenges. It saddens me to read the stories here of people not being supported, even within their own family.

I have Chronic Fatigue Syndrome (CFS). I have had CFS for many years, but something shifted 9 years ago with an exacerbation that significantly heightened my symptoms. I had to leave my teaching/counseling position and haven’t been able to return. I continually get “but you look fine”. If you ‘look fine’, then you must be fine. You’re just lazy. Perhaps if you tried harder or really wanted to get up and go. Fortunately my partner and son know that my ‘spirit’ has more spunk then most people -- my body just cannot keep up and that has nothing to do with will or not trying hard enough. I feel very supported at home where I can be ‘real’ and open about how I am feeling. I am also fortunate to have some supportive friends and extended family members.

Most people do not know that even when I am up and out and ‘looking fine’ that each step I take can feel like having cement blocks tied to my legs, that I had to wait a few hours in the morning before having my shower until the nausea and flu feeling settled a little, and that after having my shower I had to rest because lifting my arms to wash my hair was so tiring. Many people do not have a good understanding of CFS and the impact it has on a person’s life. Even people in the medical field don’t have a solid understanding. There are physicians still who believe that there is no such thing as CFS. I was denied disability because the insurance company stated that since there was no ‘objective evidence’ to accompany my symptoms, I should be able to work. It makes it a bit hard (for me anyway) to boldly state that I have CFS. I tend to not talk about my health.  And yet awareness is important.

My thoughts are with you kaythecurler, Alex, seeler, chemgal, RitaTG … as well as those of you here who support family members …. and anyone else here who experiences all that goes with having ‘hidden’ health challenges. RitaTG I admire your ability to name what’s going on for you and gently teach others not only about yourself, but others who have non-visible health challenges.

Excellent post, myst.

I wish to state publically, that I have met myst and she is a lovely, talented woman who is definately not lazy.

(Just watching her ordering bagels  -on the little island whose name I've since forgotten - made me giddy.)

Chronic "invisible" illnesses can lead to upsetting misunderstandings from both parties - precisely because they are invisible.

I have a chronic depressive illness - which is managed with medication and self-discipline.

Most of the time I'm content,  have a sense of humour, and enjoy life. Naturally, when folks see me like that it's difficult for them to realise that there are times when this is not the case...

I have had to learn to tell others of my illness - so that they'll be in a position to understand when I say, as I have to do, "I'm not doing so well lately,  I don't feel up to doing that right now".

Even when well, I've had to learn that it's better for me to attend one function a day - day and night  functions mean I get over stimulated and that can start a downward spiral. Every week I have at least one day when I stay home and don't socialise at all. If I visit folks I limit it to three days............

I've found that if you confide in others, most folks respond kindly. But, if your illness is "invisible', folks can't guess......

Like myst and others I've been criticised ("How can you suffer from depression - you're always smiling and looking happy?") - and I just let those folks go. I don't need or want them in my life. Simple as......

Working and claiming compensation and insurance can provide added stresses.

Many's the time I took time off work saying I had the flu..........

Seeler,

I notice you are very concerned with your bowling scores. I'll play a virtual game with you and you'll dicover I'm an easybeat! You can go home and say to Mr. Seeler, "I whipped the pants off that Pilgrim, she didn't have a clue.'

I wish I had more to add. I'll mention that my wife has diabetes and I have Chron's disease and I've seen both referred to as invisible illnesses at times, aIlthough they don't seem to hit us as hard as some of what has been mentioned. We both also deal with depression. That's new for me and very rough. I guess the thing is just to not make assumptions about people as we go through life. I remember reading a story where someone witnessed a person "shooting up" and assumed they were a druggie and treated them as such. It turned out it was insulin. You never know.

Deafness is another problem for people

Never really hearing the conversation and then being ignored

If someone were to say to me. The things you report I would pull up my courage to say

"my health doesn't let me do that". A second repeat would get

"have you always been so rude or has age ruined you"

At least I would like to say it

I really do appreciate the wide range of comments that have appeared on this thread.  Gentle comments, considerate comments, helpful suggestion comments.

So many different things that can malfunction on these bodies eh. 

From standing in my shoes I'd have to say - I shared each diagnosis as it was made.  When several different things are going on each one adds complications.  My family have been told about this aspect too.  Eventually they started rolling their eyes.  One adult kid is very outspoken about how 'out of shape' I am.

Recently hubby and I went somewhere with an adult child/spouse/kids and the seating was in steep bleachers.  They all climbed up and I sat down on the bottom row.  Adult child said crossly after the event "It is just SO embarrassing when you won't even sit with us".  I could only reply "I would have preferred to sit with you but I couldn't safely climb up to where you chose to sit".

I guess I'm tired of constantly saying "I'd love to be able to do that for you, but I just can't".  Or "I'm sure that would be fun but I can't play.  Maybe I could come along and take photos for you?".  I have to work hard at trying to keep my emotional response out of my comments. (Often I feel like crying when family members ignore my disabilities.)

Seeler - you could whop me at bowling any time!

I have a friend who, over the years, has become progressively deaf.

She now has 5% hearing in one ear -and a cochlear implant in the other ear.

If we're in a restaurant or pub she has a lot of difficulty hearing.

She's now purchased a thingie that she places in her best ear - with a tiny microphone which she places on the table in front of me.

After a few wines  I grab the microphone and say , "Unaccustomed as I am to public speaking............"

We're close - so she thinks it's funny, too!

There are also hearing aids that can be adjusted for large rooms. You an t use out. The background noise.

My brother in law says that with hearing aids magnifying everything you get overwhelmed by noise but can't zone in on one conversation.

Kay, I am not sure what condition you live with but perhaps these adult children of yours need some education.

An email of articles and info to read and a request that they do so they understand

I think they are being incredibly I rude

But that seating issue?

If they said that you should have said
"I agree it is embarrassing when everyone there could see how poorly you treated me by choosing to sit somewhere I could not go. I expect they are all shocked at how inconsiderate you were"

I have mild cerebral palsy. It is visible, but people who know me well are used to it and sometimes forget when it takes me longer to do things, or that I can't go down stairs easily. I've slowed down in the past few years a bit...just more stiffness, which causes more balance problems, so I use a cane. Something that does happen to me, especially under stress, is delayed processing speed...like it takes me an extra second or two to execute what my brain is telling me to do...for the brain to send the signal to whatever body part needs to do the moving and coordinating with another body part..I sometimes am consciously aware, especially when tired, that I am telling my left and right feet to alternate, for example, or my hand to grab something, or for a word to come out of my mouth (which also happens when I am anxious, but it is subtle)..it's more pronounced than in the average person...it takes me a second to "kick into gear"...and a lot of multitasking then becomes a real problem...it's like brain overload...so I often feel flustered, especially when I am on the clock and people are waiting for me.  I manage well enough that people wouldn't notice I am having a problem anymore than my usual, and probably wouldn't understand what it feels like to have the type of problem I am having...from an onlookers perspective, maybe it looks like I injured my limbs or something. It's difficult to explain to people too. The more I try to hurry, to more I muddle things up. This causes me increased anxiety, and anxiety and depression are other "hidden" disabilities I already have too..which I often feel like I have no choice but to try to hide around people I don't know, and it can be very stressful and exhausting (then I go home and crash/ have a little cry sometimes ).

 I can be shy in groups, especially when I need to walk around a room and chat...like at a party. So, I feel like people don't really get to know the real me...and might assume I am  not intelligent. At the same time, I wish people would understand that not being able to do things at warp speed doesn't mean a person isn't intelligent. Sometimes people even speak to me more loudly or slowly which bugs me to no end! I don't like it when people rush up to me before crossing the street and grab my arm without asking if I need help...total strangers...I understand they want to help, but it is disconcerting...but then I feel like a hypocrite because there have been plenty of times where I wish there was someone there to offer an arm or to notice if I am having difficulty carrying something, etc.  I guess, what I would say is that it's considerate to ask first. My partner now, when we go out together, just kind of sticks his hand out a bit to signal he's there, when we cross a busy street, just in case. I can take it or not (if I am not already holding it). He's developed a kind of sixth sense about it, which I appreciate.

 My partner himself has epilepsy. His seizures seem to be related to his sleep cycles--just falling asleep or just waking up-- so he has only ever had one in his wide awake hours twice in his life I think...so few people know about it. But it does cause (after a seizure)  changes in his mood and his short term memory, and bad headaches...but people wouldn't know unless he felt he could confide in them about it. He's a pretty proud guy I guess you could say.. he likes to play sports, etc. Having a seizure disorder is not something that easy for him to admit t or discuss.

I have found that having disabilities that are not as severe..like in my case I can walk as opposed to using a wheelchair.. or that people are used to..can mean that there's a fine line between needing  help and/ or consideration of one's disability and not getting it...or not getting enough help and consideration when it is needed. Add: and I should say, getting too much help when it isn't needed (which can be embarassing to someone who's used to being independent and high functioning most of their life...it's something I've kind of prided myself on...the less people notice my disability the better...but that doesn't work when I actually need help, which is more frequently as I get older).  Sometimes, I find I just need to be assertive and ask for a hand, ask for a seat on the bus, etc....and equally assertive in letting people know you don't need it.  Also, a little bit of extra help conserves energy, because having a disability can tire people out faster than someone who doesn't have one, because you expend more energy doing the same things as someone without a disability.. which can lead to burnout nd further breakdown in health. That's something I only learned as an adult. As a child, I was pushed to overcome, and that's what I did in many respects. As an adult, I have to be more sensible with my energy output. It's important to pace myself.  That's just the way it is...but even my family is not used to that approach with me, they're used to pushing my limits, despite physio recommendations, etc. However, it's not a cop out, it's prevention of further (or earlier onset of) muscle and joint problems and fatigue...but it's easy to slip into feeling guilty about that too, having been used to pushing myself all the time.

Thank you for sharing all of these stories folks. As someone who suffers from depression, on some days it's an accomplishment simply to get out of bed in the morning. On other days, I feel great and may not even feel the effects of mental illness. As someone who has been around people with visible and invisible disabilities for most of my life, I've come to the conclusion that it is always best to ask if someone wants help if it looks like they are having difficulties doing something.

Jon - as I just said, I can totally relate about depression. Feel free to wondermail me if you want to talk about it.

Pilgrims - I believe that island with the bagels is Granville Island.

* Tangent alert!  *

That's it! Granville island.

Here's a bagel for your trouble, possum - I think this was the very shop!

I've appreaciated the stories in this thread and the courage to become visible.  Stevie G's remark upthread bears repeating:

"That is what we need regarding disability, openness and vulnerability, a willingness to be seen... a willingness to have a face to put with an issue... to tell our stories."

Being physically or mentally vulnerable in any area is not your whole self, and I'm sure it feels like just another burden on an already burdened spirit, to speak up for yourself and teach people how to treat you with respect....but please do. 

Oh my! oh my! oh my!!!!

Now this is a thread that is making a difference!!!!!

Thank you all for sharing so openly.

Stevie G's  and ab penny's comments have summed it up so very well.......

I hope that our words, actions, and gentle openness will bring some of the wondercafe spirit out into our communities.    This seems to me to be very much what Jesus had in mind.

Hugs to all

Rita

Thanks Pilgrims :o)

A word about telling your story..........

If the hidden disability significantly impacts on your life, I believe it has to be done.

Why?

Precisely because it is "hidden". You know you have it - but those that you're relating to, don't.

Good relationships depend on open communication. If communication isn't open and honest both parties are left with no option but to "guess" what's going on. Misunderstandings occur , all the more so if the other has self esteem issues of their own.

There was a time when I was ashamed of having depression - and I tried to keep it hidden. With time, It's effects would show themselves -and I left a trail of confused and upset folks in my wake, as well as myself........

I don't like upsetting people. So I began to tell my story, firstly, to those that were significant to me and that I wanted a continuing relationship with.

I found that once folks knew - they responded well. The few that didn't I came to realise it was healthier for both of us to just move on.......

Depression isn't just about passively crying and looking sad.

It's about feeling worthless and inadequate -and full of self-loathing - which often means that when you're suffering a depressive episode your behaviour changes.

As regards feeling inadequate your confidence vanishes - things that last week didn't trouble you seem impossible to do this week.

You can imagine how confusing this is to others. Other people become your enemy - you avoid them because they might ask you to do something which you can't do. If they ask, you respond from fear - sometimes being verbally abusive.

If you feel worthless and full of self-loathing, you act it out. (Or, as my husband once said, "Sometimes you act as if you want everyone to dislike you").

Sooo, you have to play fair. You have to learn to be responsible about your disability and do what you can to minimise it's effects. This requires self-discipline and determination.

(I'm thinking here of myst - who has CFS and battles tiredness and flu-like symptoms  - and yet took the time and trouble to take me sight-seeing in Vancouver).......

You have to find the courage to trust people. When you do, you find most respond well. If they value you, they'll do what they can to make your life easier.

An unexpected bonus I've found is that your openness and honesty frees them to respond in kind - there's a lot of "hidden" disability out there..............

Thank you all for sharing your stories. I know how hard it is to be vulnerable and share stories.

Kudos, my friends, because this is how education replaces ignorance... how understanding is born, how empathy presents itself.... hopefully how we begin to change the world.

You see, without attention drawn to them (guilt or shame heaped) a person reading may see their own ignorance. They do not have to beat themselves up or be beaten up. They can simply read and say "does __ feel like that when I say__?" and think before they say it again. They can ask, "how does your illness present itself? What can I do?"....
They can examine how they take for granted people's wellness.

Maybe someone suffering a silent, hidden or misunderstood malady will decide to talk about it with their family. Maybe someone who did not understand will apologize... Maybe someone will do public education. Maybe they will start a support group... Maybe someone who would benefit from a support group will feel ok naming it and seeking that support. Maybe when talks come up about illness or disability someone will advocate. Maybe we all will think when cuts politicians talk and when budgets are discussed... when certain services are talked about being eliminated or delisted.... when we talk about accessibility....

Thank you....

Amen to Pilgrims and SG!

I don't talk about my depression all the time - what a downer that would be! But I do talk about it when the timing is appropriate. There was a time in my life when I couldn't even admit to myself what I had, but I have done a 180 degree turn since then, thankfully. I still, however, wish that I didn't have to deal with this ugly illness.

lastpointe,  I agree with your suggestion-- education is such an important piece. After many comments that clearly highlighted their lack of understanding, I sent emails to my parents/siblings with information and links on CFS. I think that helped somewhat.

kaythecurler, I would encourage you to continue to share information (websites, reports, etc) with your family. It saddens me to know that you experience a lack of consideration and understanding.

Yes indeed, Pilgrim, it was Siegels Bagels … And Pilgrim,  I was so pleased to have been able to take you around town a bit when you were here. For me, it’s about pacing, knowing what I can and cannot manage, and working with the physical consequences after activity. I am fortunate that I am able to continue to do some things in moderation and with bed time/ rest time after.

Sending emails, links to websites, informing of support groups... that is wonderful.

There are however people who will not "get it". There are also those who do not want to...and we may have to decide at what cost we are in relationship.

We do not like to think of those who do not want to, but I know of folks who were having their illness exploited.
"She won't say she is too tired, because..."
"He will give me money since he can't..."
"You didn't tell me, you are (crazy, senile, it is your Parkinson's.....)"
 

Telling someone they are crazy, lazy, hazy...  can be to exploit or abuse. Every time my mom disagreed with my brother, her illness was his trump card. He figured she felt bad enough about herself she could be treated that way and he believed she felt guilty about enough she would allow it.... My mom was strong enough to finally create healthy boundaries and he was strong enough to seek help to learn what they were (because we were not taught them) 

My mom's mental illness means (as myst cited) she needs to know what she can and cannot manage and about potential consequences. She knows she has to get to bed and get out of bed. She also knows she cannot surround herself with drama and she cannot surround herself with those who do not support her or knowingly or unknowingly sabotage her.

As she started a support group, she has other friends who are bipolar. Their standard rule is that if someone is bringing them down, they cannot and should not compromise their own health and they reassure each other they are not rejecting but are going to have to detach with love until such time as they can manage.

Great discussion.

After 35 years as a United Churh minister, I was diagnosed this year, at the age of 60, with Autism Spectrum Disorder - Asperger's Syndrome. What a relief to me, as I put up with 60 years of abuse from people who called me lazy, selfish, know-it-all, who accused me of ignoring people (I cannot maintain eye contact,) of being uncaring (yes, if you are telling me that your world is falling apart, I still have the expressionless face I normally wear). So I'm autistic, with depression and ADHD, two things that are comorbid with Autism Spectrum Disorder (ASD)

At least they don't beat me up as they did when I was younger. But there are few resources to help me explain to employers that with a bit of accomodation I could really be an asset to them. Just don't put me in a team situation, let me play my music as I work, don't keep changing what I am doing as I need structure, repetition, consistancy, and give me explicit work directions, as I take everything literally. I suspect I could preach again, but never will I put myself through the abuse of ministry with disabilities.

I'm fortunate - I am high-functioning, and so I can most times advocate for myself. I have to say that young people between 18 and 35 are far better mannered than my generation.

Blessings,

Bob

Rev. Bob Weight, Oshawa

i have MS, and the worst symptom for me is the FATIGUE.  wow, it is just ridiculous some days.  and totally invisible. i always feel like if i was missing a limb or something, at least i would LOOK like i deserved to be as withdrawn from society as i have become...

we moved a few years ago, and i have just not made the effort to go out and interact with people in the real world as much as i did in our last city.  most days, i just sit here and talk to people via facebook.  play scrabble with crazyheart.  and i feel like i am withdrawing into my shell further and further, but just the THOUGHT of getting out and socializing is exhausting to me... just friggin' typing it makes me sigh.

i probably should.  i have always been an extrovert, and socializing gives me so much energy.  but last night, i was out at a get together for the parents of my sons hockey team, and just as the party seemed to be getting started, i felt like i had 12lb weights on my limbs and ducked out.  afternoon soirees are more my thing these days. 

and partaking of wine is totally out... my poor body just can't take it anymore.

man, i am such a downer.

sighs - this sounds really tough and like it is dragging you down.  MS is strange in the way it deals with different people.  A different challenge for each one.

I'm sorry you have this in your life and hope you find a way to live more fully as time goes on.  One person I know who was struggling with health challenges found it really useful to talk with a counsellor who helped her choose ways to participate in the wider community on her own terms. 

Cyber hugs coming your way.

thanks, kay...  much appreciated.

Sighs,

Is it possible to do lunches, rather that go out at night?

(Since becoming an oldie I've learnt that I cope better with socialising at lunch, rather than dinner.)

As an extrovert you need a social life that involves lots of face to face contact.

My niece's partner has MS and has both good and poor energy days -and socialises on the days that are possible.

I think if your friends and acquaintances are aware of your illness they'll understand and try to fit in with your needs.

I get your frustration in your post -so hope you'll be able to find a way that works for you.

Hey sighs ... good to see you back here again - I've missed your spunky presence - sorry to hear the MS is taking such a toll these days. 

I think it could certainly be daunting, and a big energy drain, for anyone (maximally healthy or otherwise) who moves to a new city/community - it's gotta be a big transition - and with kids in your pocket - I imagine lots of your energy goes to them too.  So be gentle with yourself girl.   Any chance that depression thing is a contributing factor in the social withdrawal?  (rhetorical question - no need to reply out loud! just a thought)

That being said - your extrovert does need (and probably at some level crave) that real life interaction - so hopefully you can, as pilgrims said, find a way that works for you.   But in the meantime, I bet CH enjoys your scrabble games!!

I have battled with depression  and anxiety. One can tell me "get over yourself" or things like that, or blame me for not pulling myself up by my bootstraps to see life the way they do when I am in the pits, but that doesn't helpat all. It just sounds arrogant to me. Counselling helps the best. Medications are touch n' go. I have a mild visible disability as well,and I feel that dealing with others' ignorance about it actaully contributes to my anxiety and brings me down at times (I suppose when I let it...but it would be nice not to have to explain myself all the time). But it could be much worse...that it is not worse, I am grateful. I think I do pretty well.

My partner has epilepsy. He has grand mal seizures about once every few months or thereabouts. They happen when he is drifting off to sleep or just waking up (so few people know he has them--day to day he's "normal" except he has some memory problems as a result of the illness that caused the brain injury that caused the seizures in the first place--but hardly noticeable if you don't know him well...and doesn't feel well, sometimes unable to go to work until several hours/ a day after a seizure)...and they're terrfiying. I can stay relatively calm and know what to do...but my heart always races...they still terrify me to watch. And I sometimes cry when they're over. I feel so helpless to help him. There is absolutely nothing you can do but ride them out and make sure he doesn't injure himself. He has no recollection of them usually, except for the very start of one. He is unconscious for the convulsions, and involuntary bodily responses. Medication controls them pretty well, but is not foolproof. However, I wouldn't toy around with natural cures in his case...because a slight upset to his brain chemistry can trigger a seizure. Too dangerous. We know that the medication, for the most part, works. He shouldn't do things like drink alcohol (has been adivsed to be cautious of that), because that can trigger a seizure the day afterwards (not always, but I notice a pattern), but he does anyway from time to time and that sometimes upsets me..for fear that he will have a seizure...but I don't want him to live like a monk either, if he doesn't want to live like a monk. It's not an easy condition.

Kimmio, I think most people with triggers to a condition don't always avoid the trigger.  I know I don't!  Sometimes the benefit of just living your life how you want to live it outweighs the reaction that could occur.

SIghs, I agree to try and get out for lunch or coffee with some people when you're able!  I'm more of an introvert, but I still find it's important for me to get out and socialize, even if I'm not really feeling up to it.  It may have increased my immediate fatigue, but over the long term it had a positive effect.  Good luck with finding that balance!

For those who don't have the energy to plan for social occasions - especially those that might involve having people in, I have discovered short-notice spontanious happenings work better for me.  Instead of saying:  "I'll have my friend over for an afternoon sometime soon." and it not happening, wake up some morning and say,  "I'm going to call my friend as see if she can come for coffee this morning."    On short notice they don't expect much.  A quick tidy of the living-room, some coffee and what-have-you (maybe crackers and cheese or Oreo cookies rather than fancy snacks or a cheesecake).   

Last week I thought of a friend who I hadn't seen for awhile.  I called, she could come for mid-morning tea the next day.  Then I thought of a mutual friend.  Yes, she was coming in to town for the day and had a couple of hours between appointments.  We had a wonderful time.  We had been planning to get together since June and this was the first time we were all available - and it was short-notice, unplanned. 

Sigh, I am an extrovert and the past year or so that is one of the things i have missed most - people. But, like you , some days are just not worth the effort . I benefit from the internet and scrabble and WC but one of the pictures I have of you in my mind is you and your kids running throughout your neighbourhood waving Rider Colours and cheering for the Green and white when they won and another picture one night in your kitchen when you were dying your girl's hair. Whoop! Much laughing. This is  what I miss -. So maybe there is something in the "laughing makes one feel better' 

The transition of moving, AND  raising kidsAND A NEW CITY  is tough. especially when some days you must have only energy for yourself. sO I am starting a laughing thread, I have a feeling only women appreciate these kind of things so drop in and chortle, chuckle, giggle or snort. This is for all of us