What NOT to say to people who are crhonically ill / disabled

[Tnmusicman]

Can I just say I'm sorry?

Sure you can and I thank you.

 

[Templar101]

Colleen this is a great thread. It's fantastic to read my thoughts and feeling expressed by another person.

The comment I hate is "(insert name) has that as well. They manage just fine, how come you can't"?

I was originally diagnosed with IBS irritable bowel syndrome. Every body knows some one who has that, right? Then my doc said its all in my head. There is truth in that, but it's not "ALL" in my head. A lot of it is defiantly in my guts. it's like stage fright makes you need to go wee. You really do need the wee, but the trigger was in your head. More extreme is fight and flight. During incredible fear people can mess them selves <staff edit>

So lots of head stuff effects the guts. But that does not mean its ALL in the head.

Any way 4 years later and a few new fancy tests and I don't have IBS..... I have a problem with my liver. My liver is telling my guts to digest. Digest all the time. Make more stomach acid, make it string, make it quicker, but most of all MAKE MORE ACID.

This has the side effect of making me have the runs. Iv had it for nearly 5 years now. There is still the mental aspect of it, but the doctors have stopped dismissing me.

I have bile acid malabsorption. I also have IBS. They have caused me to have prostateitus (very painful inflammation of the male glade). That creates terrible pain in my back passage and my testicles. I have horrible heart burn. It makes me feel how I imagine John Hurt felt in Alen when the alien burst out of his chest. It's killed my gut flora which is the largest part of your basic immune system (so I catch every thing). I can't control my own body temperature. I pass digestive blood when I go number 2, and that causes e to become faint. The final straw is I am dissolving my stomach and back passage away.

Because my digestive system works over time and because I pass my food out of me so quickly, I am also always hungry. But I still absorb nutrients just fine. So I eat a lot as my gut is empty, but I absorb all the calories and nutrients normally, so iv put in a garden shed lad of weight.

 

[Templar101]

But iv come to terms with it over the last year.
Knowing that the doctors agree that I have this problem and that they are working to fix it, has axe life much more bearable. It does not feel like this is my fault. It's not in my head. It's not about trying harder. I actually don't feel responsible for my condition any more.

The release, the lifting of the burden of feeling guilty for being unwell has made me feel much better. I'm not any better physically, but my mental health is incredibly good again :0)

I now see the up side to my life, not just the down side.

I am able to stop my going to the loo. It takes about 24 hors of medicating my self, but I can do it. I can be almost normal for as much as 3-5 days. After 5 days it's to unbearable to continue to be blocked and the heart burn, the gut acid and the buid up of needing to go loo are beyond my endurance. More importantly last time I went 5 days I ruptured my colon and needed surgery.

But I can buy a good day. What ever I buy today I pay twice for tomorrow. So if I medicate Sunday so I can do something important on Monday, then Tuesday and Wednesday are horrible days.

Some times it's worth it :0)
I have not missed any of my 6 year old daughters school plays, nativity plays, parent teacher meetings. I took her to school on her first day. I took her o her new school on the first day. And so many other things like that, that iv not missed. The few friends I still have envy me for being present at those points. They have jobs to pay the bills and buy the food. They miss so much of the day time stuff.

The they moan about their jobs to me. But none of them would swap with me. I however, would do any of their jobs gladly as none of them have a boss that is as horrible to them as my guts are to me ;0)

Life is what you make it. Some times life is full of poo. But iv watched a lot of great films in the olo. Iv read some great works of literature, read wonderful stories, helped people on line offering support, prayed to god, laughed with friends on line. Iv done some studying with the open university. Iv even partitioned members of government by email and with online firms.

I would still swap it all in exchange for my health. To play football in the park with my 2 year old son. To teach karate to my 4 year old daughter. To take my eldest, to her ballet class on Saturday morning! To earn my own wage instead of government benefits. To make love to my wife again. These are the things society teaches us are the normal day to day activities that grown me take part in. These are the things I mourn from time time.

 

[renewed21]

I tell you waht not to say:

Don't tell me I'm not covered when I am, which makes me miss something very important. <staff edit>

AAAAAAAAAAAHHHHHHHHHH!!1

There I'm better. Sorry.

 

[desmalia]

Welcome, Templar. I'm sorry you are going through all that. I've had IBS since I was a baby, so I can relate to some of that. Definitely things like stress can have a major affect, but there is something wrong physically too that is definitely not "all in your head". I've had to drastically change my diet (for that and to try and keep ahead of the MS), and it helps a lot, but is still not a cure. Please be careful not to borrow from tomorrow too often as the price is always so high! God bless.

 

[Colleen1]

Yes, things can be tough when stress comes along. It's not a good mix with chronic illness or any illness. I agree. One of the things people say or elude to that bothers me the most is that it's all in your head. It can be very invalidating. The thing is I think many people are the best judge of their feelings and needs. Who better to know how you are feeling than you and who better to know how I"m feeling than me.

 

[desmalia]

Yes, things can be tough when stress comes along. It's not a good mix with chronic illness or any illness. I agree. One of the things people say or elude to that bothers me the most is that it's all in your head. It can be very invalidating. The thing is I think many people are the best judge of their feelings and needs. Who better to know how you are feeling than you and who better to know how I"m feeling than me.

Well said, Colleen. I think I'm slowly developing a thicker skin to those kinds of comments from people. It's also become a marker of whether a doctor is worth seeing or not. If they start with comments like that I'm out the door. My time and energy are far too valuable to me to tolerate that kind of nonsense. Doctors need to be aware of hypochondria, definitely. But too many assume that every new (especially female) patient that walks through the door has it. In reality doctors need to be aware that we do know our own bodies better than anyone else, especially those of us with chronic illness because our bodies are always screaming something at us.

 

[Colleen1]

Well said, Colleen. I think I'm slowly developing a thicker skin to those kinds of comments from people. It's also become a marker of whether a doctor is worth seeing or not. If they start with comments like that I'm out the door. My time and energy are far too valuable to me to tolerate that kind of nonsense. Doctors need to be aware of hypochondria, definitely. But too many assume that every new (especially female) patient that walks through the door has it. In reality doctors need to be aware that we do know our own bodies better than anyone else, especially those of us with chronic illness because our bodies are always screaming something at us.

Exactly I hear you. Dealing with professionals in some situations can be tricky.

 

[Colleen1]

Well, this isn't something one says per se. It actually has to do with others not listening and me not feeling heard. I can be speaking to the right person about the right situation but not feel heard and it's like I have to say, "Can we back up; I need you to hear this". It can be frustrating when I'm struggling to be heard because it's awkward and invalidating but also in my experience the majority of lapses in benefits / help are because of miscommunication or inaccuracy in files etc. So annoying when these things are easily avoidable if one only listens.

 

[SarahSalt09]

Hello, this is my first post . I've got Chronic Fatigue Syndrome, 8yrs now.

Looking after myself is a full time job, so when someone close to me said "I wish I didn't have to go to work", as if I'm just on a holiday, it hurt.

Also, when I tell anyone (who doesn't understand how chronic fatigue works), how much time I need to spend resting, they are often envious and view it as a luxury, which it's not, it's a necessity.

 

[desmalia]

Well, this isn't something one says per se. It actually has to do with others not listening and me not feeling heard. I can be speaking to the right person about the right situation but not feel heard and it's like I have to say, "Can we back up; I need you to hear this". It can be frustrating when I'm struggling to be heard because it's awkward and invalidating but also in my experience the majority of lapses in benefits / help are because of miscommunication or inaccuracy in files etc. So annoying when these things are easily avoidable if one only listens.

I hear ya!
As an introvert, I can relate.

Hello, this is my first post . I've got Chronic Fatigue Syndrome, 8yrs now.

Looking after myself is a full time job, so when someone close to me said "I wish I didn't have to go to work", as if I'm just on a holiday, it hurt.

Also, when I tell anyone (who doesn't understand how chronic fatigue works), how much time I need to spend resting, they are often envious and view it as a luxury, which it's not, it's a necessity.

Welcome, Sarah!
I can definitely relate to this. I had fatigue for so many years before my diagnosis, that I still struggle with guilt. I work part time, but just getting up early to do the four hour shifts is enough to knock me flat for the rest of the day, and people can be very annoyed with me for not doing more with my day, for taking all the time to rest, etc. I do run into comments like "gee, I wish I only had to work part time". Sadly, not having the energy to work full time doesn't mean the bills magically get paid. It's a frustrating situation.

 

[Colleen1]

Hello, this is my first post . I've got Chronic Fatigue Syndrome, 8yrs now.

Looking after myself is a full time job, so when someone close to me said "I wish I didn't have to go to work", as if I'm just on a holiday, it hurt.

Also, when I tell anyone (who doesn't understand how chronic fatigue works), how much time I need to spend resting, they are often envious and view it as a luxury, which it's not, it's a necessity.

That is unpleasant. There are so many misconceptions.

 

[Colleen1]

"you're unmotivated" "you just need to do more"

 

[Colleen1]

"you're not really sick"

 

[Colleen1]

"you're just depressed"

 

[renewed21]

"you're just depressed"

AHHHHHHHHHHHHHHHHHHH!....thats the worst!!!!!!!!!!!!

oh how I hate that one. If only people could walk in our shoes for a day . Oh man that one really makes me have to calm myself down when I hear that.


I feel better now, TY Colleen.

 

[renewed21]

"I hope you die"

 

[Colleen1]

AHHHHHHHHHHHHHHHHHHH!....thats the worst!!!!!!!!!!!!

oh how I hate that one. If only people could walk in our shoes for a day . Oh man that one really makes me have to calm myself down when I hear that.


I feel better now, TY Colleen.

Aww, yes, it is a tough one to tolerate. It tends to be my biggie too.

 

[Colleen1]

"I hope you die"

Not good or right. It can be so very difficult to know how to be assertive with some people and the things they tell us or with the things they do. Some times I find with some people it's better to just walk away and not mention anything because no matter what we say or how we say it, it will be used to further hurt us. It's so unfortunate that this can happen but in my life I have found that it has / does. I think it is good to share with people who understand.

 

[renewed21]

"I dont love you anymore"