I gotta stop playing the victim card, I think...

[David Jackson]

I've been brewing up with a theory in my mind for a while now, and wanted to share it here, and see if anyone else thinks along the same lines.

It's a difficult theory to accept, but I am starting to suspect that it's true...

I thinking that, as long as we feel like victims, whether that be of the disease, or of the medical system or of other people or whatever else, we won't be able to recover.

I'm not super familiar with it all, but I'm kinda going off Bruce Lipton's work here, as well as just my gut suspicion.

As long as we feel like victims, our bodies won't be turning on the right switches to make a recovery possible... that's my very lay-person way of describing it.

And, yeah, I know that would make recovery super-damn hard. I play the victum card in my mind all the time.

Let me know what you all think; interested to hear other thoughts and opinions on this.

 

[pattismith]

I think playing the victim card is not helping (and can worsen the initial disease and lead to true depression), but playing the wining card doesn't cure the disease.
I actually played the victime card at first, then it took me years to recover from a deep depression, and then played the wining card.
This wining card allowed me to fight to survive, and finally to find my disease: Myotonic Dystrophia.

This isn't a disease that can be cured, and treatment are not efficient, but knowing my disease is a great achievement in my life and it gives me more strength.

 

[gbells]

I thinking that, as long as we feel like victims, whether that be of the disease, or of the medical system or of other people or whatever else, we won't be able to recover.

...
As long as we feel like victims, our bodies won't be turning on the right switches to make a recovery possible... that's my very lay-person way of describing it.

And, yeah, I know that would make recovery super-damn hard. I play the victum card in my mind all the time.

Let me know what you all think; interested to hear other thoughts and opinions on this.

Given how disabling SEIDs is, I think that demanding that your body recover when it is in the middle of a major disease process, that this is a denial of what is going on. Men are known for "toughing it out" so the idea is that if we are tough enough that we can overcome anything. However, when you can't then this whole idea comes crashing down and it sets one up to feal hopeless and triggers depression. So I think it is actually a very distorted thought process. A cognitive distortion.

I've been though cognitive behavioral therapy for depression and struggle with intermittent bouts of depression. It is very important to reframe your thinking in a supportive and positive way to avoid overtaxing your brain with the negative feelings or worry and hopelessness. Demanding the impossible isn't positive, it is self defeating. A better way to think would be to adjust your demands to your new body state, accepting and supporting yourself. Like "Gee, I'm not well and that's ok. I'm doing the best I can for the position I'm in. I read 20 pages from a psychology bibliotherapy book on depression or self-love. I meditated five minutes today. I went for a 7 minute walk. I appreciated 10 things today. I had a nice day despite my challenges and I'm ok with not being Mr. Perfect."

If the thoughts wouldn't help someone else and are unrealistic then they aren't helping you when you think them about yourself.

 

[Pearshaped]

I agree its not helpful to see oneself as a victim bec of ilness.

But frankly,a physical desease won't heal just bec one strives to "think pink".
Your theory sounds a little bit like "everybodys self to blame if he doesn't recover."(no offence)

or "if there is willpower,there's a way to get better" those who think like this have never been really ill i guess.


Or do you rather mean acceptance that life isn't and won't be like it was before illness?(which i think is needed to avoid rollercoaster life)

 

[YippeeKi YOW !!]

@
I totally agree with your insight on playing the victim card. I think it is part of what makes this illness so difficult, tho not the controlling part.

I do think that we can be as angry as we want with this dismal little thunderstorm of an illness, and with the contemptuous and dismissive treatment we often get from clueless Drs and the medical establishment in general, without playing the victim.

And I think, as you apparently do, that as long as we cast ourselves as victims, healing is difficult. Taking ourselves out of the victim mode wont cure us, but it absolutely makes the road we have to travel a little smoother.

While we're feeling sorry for ourselves and victimized by this illness, we overlook the many other, equally dismal and often fatal illnesses that we could be contending with. Like cancer, among others.

So buck up and accept that life is unfair and has a twisted sense of humor, and worse things could happen. Wont heal us, but will smooth the way.

 

[ljimbo423]

I thinking that, as long as we feel like victims, whether that be of the disease, or of the medical system or of other people or whatever else, we won't be able to recover.

I'm not super familiar with it all, but I'm kinda going off Bruce Lipton's work here, as well as just my gut suspicion.

As long as we feel like victims, our bodies won't be turning on the right switches to make a recovery possible... that's my very lay-person way of describing it.

I agree with what others have said about playing the victim. Those thoughts and feelings need to be processed and either re-framed or let go of.

What I did that turned my life around (although slowly) was when I realized that there had to be a way out of ME/CFS and that it could be possible for me to find it.

When I accepted that, I started to research relentlessly and over the last 10-12 years, have moved myself from severe to mild CFS and continue to improve.

First I needed to believe it was at least possible and that gave me the motivation to research, buy supplements etc, to slowly turn things around.

 

[Dechi]

Playing the victim serves no purpose in life. Ever. I’ve never played the victim and I have been getting worse. This disease doesn’t cure itself.

 

[JES]

As a mental framework I don't disagree with the idea to put aside the victim card. However, when it comes to the science itself, epigenetics have been extended to mean all sorts of things they don't. Epigenetics is a bit similar buzzword today as neuroplasticity, energy medicine or my favourite one, quantum healing. These kind of cool concepts tend to get applied well beyond what any mainstream scientist would consider them relevant and rarely do they extend much to practical medicine, otherwise we would see cancers healing by willpower, legs extending and stuff like CBT/GET providing to be a superior therapy for ME/CFS.

 

[Revel]

For the first 20 years of this illness, I didn't even know I had ME/CFS. Even at this point my GP only diagnosed me with PVF. Twice during the initial years I was hospitalised for months and was at the "very severe" end of the scale with a poor prognosis for survival.

With each remission from this "mystery illness" I thought that I was back on track to full health, I didn't know any better. At no point did I consider myself a "victim", or that I had an incurable condition. It simply never occurred to me to think this way.

I wasn't officially diagnosed with ME/CFS until the 35 year mark. Not seeing myself as a "victim" has done nothing to prevent the continuation and eventual progression of this illness for me.

 

[David Jackson]

Thanks for all the replies, everyone. It’s good to hear the different perspectives on this.

And, yeah, just to clarify, I’m not suggesting that we can recover simply by positive thinking alone.

My theory is that negativity prevents or makes the recovery/improvement much more difficult, by way of the chemistry that occurs in the body from such negative thinking.

And not just negative thoughts, but a general overall negative feeling about our lives, which I have been starting to recognise in myself, at least, as a type of victimhood.

I’m thinking that, for some good improvement in out health to take place, there needs to be a general feeling about our lives of progress or positivity, whether that be from acceptance and peace, or from unyielding true-grit.

Though, admittedly, that feeling is very difficult to maintain, at times. Maybe all the time, depending on the severity of your condition.

 

[gbells]

Thanks for all the replies, everyone. It’s good to hear the different perspectives on this.

And, yeah, just to clarify, I’m not suggesting that we can recover simply by positive thinking alone.

My theory is that negativity prevents or makes the recovery/improvement much more difficult, by way of the chemistry that occurs in the body from such negative thinking.

And not just negative thoughts, but a general overall negative feeling about our lives, which I have been starting to recognise in myself, at least, as a type of victimhood.

I’m thinking that, for some good improvement in out health to take place, there needs to be a general feeling about our lives of progress or positivity, whether that be from acceptance and peace, or from unyielding true-grit.

Though, admittedly, that feeling is very difficult to maintain, at times. Maybe all the time, depending on the severity of your condition.

If that really worked then one would have expected the GET and CBT therapy to work, because CBT is all about reframing ones mind and GET is essentially forcing onself to exercise in a slow, steady way. Unfortunately, for 90% of the patients in the studies it didn't help.

Ignoring the limitations of our bodies just harms us. If you overdo exercise/activity then you'll get post-exertional malaise and even lose exercise capacity faster.

 

[Strawberry]

@David Jackson There was someone here a number of years ago that posted a link to a positive thinking way of healing. I downloaded the papers way back then but I never used the counseling services. It might be of interest for you to at least read. It is about 45 pages though so quite long if you have concentration issues. It definitely doesn't start recovery (IMO) but it does help with coping. It will take me some time to find it, but I will let you know if I do in case you are interested. It might be more successful for people that have not been sick for long.

 

[Rufous McKinney]

There was someone here a number of years ago that posted a link to a positive thinking way of healing.

I'd like to see that Paper if you care to dig it up ....sounds useful.

I struggle at times with my generally more pessimistic outlook. I live with an optimist. I see clear differences in approach.

My Optimist is convinced every supplement in that suitcase over there is the miracle cure.

The pessimist can't tell most of the time if THAT helped or THAT didn't.

But which ever, keep the flame of Hope and Future Improvement...Lit. Today is today, and this could change and something else can happen and that could be good. Or better.

 

[gbells]

I'd like to see that Paper if you care to dig it up ....sounds useful.

I struggle at times with my generally more pessimistic outlook. I live with an optimist. I see clear differences in approach.

My Optimist is convinced every supplement in that suitcase over there is the miracle cure.

The pessimist can't tell most of the time if THAT helped or THAT didn't.

But which ever, keep the flame of Hope and Future Improvement...Lit. Today is today, and this could change and something else can happen and that could be good. Or better.

Be careful not to label being a realist as a pessimist.

 

[Rufous McKinney]

being a realist as a pessimist

Thats a good point...thats also part of all that swirl.

 

[Strawberry]

Well I found the original post! Unfortunately the link she posted went to a blog that she has since taken down. So I will have to pull out the papers and see if I can find where they originated from. Also, after re-reading her post, she hadn't been sick long when she recovered. So maybe that is why it worked for her... My opinion is that anyone that wants to try that route, should. Even if it helps with coping, that is a good thing.

 

[Rufous McKinney]

So maybe that is why it worked for her... My opinion is that anyone that wants to try that route, should. Even if it helps with coping, that is a good thing.

Don't stress....can likely cobble together....a Dale Carnegie course, self prescribed. Except at the moment, I'm not trying to win friends or influence people!

 

[Tammy]

No matter what feelings I have about the medical establishment, this illness, the why , the how, etc....(good, bad, or ugly).................I don't think that necessarily means I'm playing the victim.

 

[alkt]

I have never felt like a victim to this disease to be a victim of any thing implies some external malicious intent do you feel like a victim if you fall and break a bone no it is just one of those unpleasant life events that can happen to anyone . psychologising diseases has never helped anyone . whether you face a life threatening illness with stoicism or a perverse why me approach will not change the outcome .

 

[gbells]

The reason I brought up realism is because people with a realistic outlook vs positive or negative have less depression in a study. Positive outlooks gets you discouraged when things don't improve. It's like religion in that way.