Should I or Shouldn't I? The Chronic Illness Dilemma Poll

Which Chronic Illness Dilemmas Do You Battle With? (From Toni Bernhard)

  • Do I accept an invitation for a get together or do I refuse it?

    Votes: 17 77.3%
  • Do I tell family and friends how I’m faring with my health or do I keep it to myself?

    Votes: 17 77.3%
  • Do I keep a routine follow-up doctor’s appointment or do I cancel it?

    Votes: 9 40.9%
  • Do I try to look my best when I'm around people or do I let my looks reflect how I’m really fee

    Votes: 12 54.5%
  • If an opportunity arises, do I go beyond what my body can comfortably handle or do I play it safe?

    Votes: 17 77.3%
  • Do I try a new treatment someone is urging on me or do I take a pass?

    Votes: 10 45.5%
  • Do I pursue a new interest even though it exacerbates my symptoms or do I stick to my old routine?

    Votes: 14 63.6%

  • Total voters
    22

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Toni Bernhard has just published a piece "Should I or Shouldn’t I? The Dilemmas of Chronic Illness -Seven recurring dilemmas faced by the chronically ill"

[fright]
Which-pathway.jpg
[/fright]These probably apply to many people who have an illness but I think they are probably particularly relevant for people with ME/CFS.

She notes "What I want, of course, is to paint and to not feel more sick, but we know from the Buddha and The Stones that you can’t always get what you want—a life-long dilemma that presents itself for my consideration every single day."

Isn't that the truth!

Are there any that you would add?

Click on the link - "Should I or Shouldn’t I? The Dilemmas of Chronic Illness -Seven recurring dilemmas faced by the chronically ill" - to read Toni's entire piece.

___________________________________________

Toni is the author of three books on living with chronic illness
Visit www.tonibernhard.com (link is external) for more information.
 

Hope

Active Member
For me the most regular dilemma is do I tell people how I really am and what's going on with my health. I so much don't want to be a bore but I also know that to connect with people we have to let others know us.
 

IrisRV

Well-Known Member
For me the most regular dilemma is do I tell people how I really am and what's going on with my health. I so much don't want to be a bore but I also know that to connect with people we have to let others know us.
Same here.

Another issue I think about is that it is up to us to witness for this illness. People are not going to know how serious this illness is unless we show them. I'm not suggesting we bog people down with long complaints. That will turn them off immediately. However, we do have to avoid hiding our illness as well. The world needs to see the impact of this illness on our lives. Some people have to fear that it might happen to them before they'll help put an end to a serious illness.
 

Hope

Active Member
I do think about this too and it sometimes motivates me to explain things. The fear of being annoying is pretty high though and something I'm working on :)
 

lisaadele

Active Member
I find it a struggle to reveal the extent of my health problems with others. I'd like to be more open and sharing but hate the feeling of being exposed and knowing that largely people are not getting it. I agree with the need to witness/show people and educate though- just wish it didn't cause more stress and ill health doing so.
 

San Diego

Well-Known Member
When was “mild”, I always chose to do things and suffer the consequences.

As I became “moderate”, I became more careful and more limited, as the consequences became much greater.

Now “severe”, I no longer get to make many choices - my body makes them for me.

This has led to an odd sort of freedom. If I’m going to visit with someone, they are often going to see me in bed at my worst. I can’t hide my illness any longer, so I don’t feel the pressure to even try. After ten years of faking it, this is a little bit of a relief.
 

IrisRV

Well-Known Member
I found out early on that a PEM episode was not a temporary inconvenience that I was willing to accept in order to do something I wanted to do. Every PEM episode left me at least a little, and sometimes a lot, worse off than I was before it.

For me it is a question of whether the event/interest is worth being sicker for years at least, and possibly the rest of my life. Few things are worth that. My mother's sudden death and funeral resulted in my doing more than I knew was safe for me, but I felt I needed to go. I ended up bedbound for years afterwards and still have many symptoms I didn't have prior.

So no, I don't do things I know are beyond my capability.

I do very, very mildly push the boundaries occasionally to see if I've gained capability, and sometimes I have gained a little.
 

Veet

Well-Known Member
For me it is a question of whether the event/interest is worth being sicker for years at least, and possibly the rest of my life.
Exactly. Before ME, I often asked myself, re an event, "Will this change my life?" Now, the answer is, with few exceptions, "stay home."
 

madie

Well-Known Member
I've found my balance point, so the suggestions aren't dilemmas for me. I lost all of my support groups except for my own children and 3 friends many years ago, so over-socializing isn't a problem. I'm solitary by nature, and when I want to be around people I go read at a bookstore or library. I've never liked driving, and now that my safe range is about 15 minutes on local roads, there's no pull to go exploring.

When I watch people, it seems that they have all this energy and they're constantly looking for places to put it. They remodel their homes, go on very busy vacations, sit around talking excitedly about....geez, seriously? That feels similar to the above dilemmas, just on a larger scale.

It's interesting that she references the Buddha, but stays in duality.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I've found my balance point, so the suggestions aren't dilemmas for me. I lost all of my support groups except for my own children and 3 friends many years ago, so over-socializing isn't a problem. I'm solitary by nature, and when I want to be around people I go read at a bookstore or library. I've never liked driving, and now that my safe range is about 15 minutes on local roads, there's no pull to go exploring.

When I watch people, it seems that they have all this energy and they're constantly looking for places to put it. They remodel their homes, go on very busy vacations, sit around talking excitedly about....geez, seriously? That feels similar to the above dilemmas, just on a larger scale.
Well said
 

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