diseases with similar disability and suffering level to ME

[alex3619]

Severity counts for a lot. How do you compare a mild form of ME to a severe form of something else? Comparisons involve making value judgments, and different people will value things differently. Its also hard to compare diseases on quality of life issues without considering mortality rates. Morbidity and mortality both have impact. It is the case though that most, but not all, diseases have better tests and treatments available, and a great many do not have the stigma.

 

[Woolie]

Its also hard to compare diseases on quality of life issues without considering mortality rates. Morbidity and mortality both have impact.

I think the point here is that if you add up all the hours we lose to this illness (decades in some cases), the total life lost is often as great, or even greater than, those that live a full life but die prematurely.

 

[Marc_NL]

This convo is maybe a little wrong?

Sorry Justy, sometimes my mind goes strange directions, usually I can keep it to myself but this time I was weak

It's of course totally different things, on the other hand I think for the average person it's much easier to relate to missing a hand than to all sorts of diseases we know very little about, I think BruceInOz said it a lot better than I did:

I remember seeing something on TV a few years ago about someone who had lost one or two limbs and how they had fought back and done lots of very positive things with their life despite the adversity. It really struck me at the time how PEM makes it nearly impossible to get that sense of fulfillment he was talking about. It's hard to "achieve despite the adversity" when any increase in energy expenditure above that needed to just exist knocks you flat. I would have happily traded my illness for his situation.

 

[hellytheelephant]

For me, I would not swap my life for one with another illness- because- just as people don't appreciate what WE go through, I am certain that we do not appreciate what other people are going through.

Someone may appear to have adjusted well to disability or limb loss, but we have no idea what is going on beneath the surface. Yes, we are a special case because a) ME has no test to prove we have it, b) clinicians can seem more interested in discussing whether it is a physical or mental illness, and c) there is no cure.

As well as being a community of ME patients we are also part of the wider disability community, and I don't think looking wistfully at other sick/disabled people is going to help anyone.

Anyone in this world who is sick and suffering in any way is not to be envied.

 

[arewenearlythereyet]

For me, I would not swap my life for one with another illness- because- just as people don't appreciate what WE go through, I am certain that we do not appreciate what other people are going through.

Someone may appear to have adjusted well to disability or limb loss, but we have no idea what is going on beneath the surface. Yes, we are a special case because a) ME has no test to prove we have it, b) clinicians can seem more interested in discussing whether it is a physical or mental illness, and c) there is no cure.

As well as being a community of ME patients we are also part of the wider disability community, and I don't think looking wistfully at other sick/disabled people is going to help anyone.

Anyone in this world who is sick and suffering in any way is not to be envied.

I wholeheartedly agree with this. Comparing disabilities seems really wrong. I have only got CFS relatively recently but have had another disability I've had since childhood. I don't consider them remotely similar or comparable (in terms of what you have to deal with). They are their own thing in my mind anyway. Although I agree that some diseases and conditions are more socially acceptable in other people's eyes the more important point is to educate so that the non disabled are a little more tolerant and charitable to their fellow human beings. There is a danger If we start comparing illnesses and ranking them we become exactly like those intolerant dismissive people that are so difficult to deal with. Sorry if this is a bit ranty.....probably need to take some folate.

 

[BruceInOz]

I wholeheartedly agree with this. Comparing disabilities seems really wrong.

I would also agree with this. I intended my observation as an expression of the frustration of this illness not allowing me to fight back. I didn't mean to imply that I devalue other's experiences of disability.