Everyone wants to get well, and if you asked anyone with chronic fatigue syndrome and/or fibromyalgia the one thing they wanted in their life, it would probably simply be to be healthy again. Most people would say they would do anything to be healthy again, and, in fact, people often invest uncountable hours and enormous amounts of money trying to get better.
Carol Lefelt’s recent blog, however, probably explained many long time ME/CFS patients mindset perfectly. Her initial optimism that she would get well was replaced, after 15 years of mostly fruitless trying, by a mindset that more expects failure than success. The doctor’s office that was a source of hope and possibility in the beginning became more of a disappointment waiting to happen in the end. How could it be otherwise?
What Stops You?
The question this blog asks is what stops you in your fight to get better? It suggests that everybody gets stopped somewhere. Whether it’s due to money considerations, disappointments from the past, access to physicians or beliefs about what kind of illness you have, everybody gets stopped at some point. Nobody (or almost nobody) tries everything.
It doesn’t suggest that anyone should try everything or anyone should try anything. It doesn’t suggest that it’s not entirely appropriate to stop looking. It simply tries to identify what stops you from looking?
It also acknowledges that it’s probably not true that most of us would do anything to get better. I would stop at asking my family for more money for instance. I wouldn’t try a high risk treatment that might make me worse. I know I should be trying supplements, but I hate spending money on them even though I can afford them now.
The belief that nothing will probably will ever REALLY work, even though I know people who have gotten well doing things I haven’t tried yet, stops me. Despite the fact that I haven’t seen an ME/CFS expert for almost 15 years, I know it’s not going to work out. It’s not logical; it’s something I decided at some point. On some level I’ve basically given up…
These are some of the things that have stopped me.
Reasons for Stopping
Resignation – I’ve tried so many things that didn’t work, the chances are low that I’ll find anything that does work. It might happen for someone else but not for me. I’m pretty much a lost cause.
Cost – I don’t have the money, I’m not willing to go into (more) debt, and I’m not going to ask anyone for it.
Bad Experiences in the Past - bad side effects from past treatments make me leery about trying new ones, even if there’s little chance that they would cause the same effects.
Stress – I’ve had enough of getting my hopes up and getting them crushed again. It’s probably not going to work out anyway, so why try? I would rather just be at peace.
Certainty About What’s Wrong – I know what’s wrong with me and therefore I know some treatments will not work so why try them? Joey Tuan knew his disease was virally mediated. Because of that he closed off an option that ended up working for him for years. What are you so sure about that could, without your realizing it, be keeping you from trying something that works?
I’m Not Giving Up My Pleasures (when I have so few left.) – Diets probably fit in here. Why give up one of the few pleasures I have with this grotesque diet (that probably won’t work). Pacing does as well.
It’s too Weird - people will laugh, get angry or complain when I try this doozy of a treatment – so I’m not going to try it.
It’s Too Much Trouble or Work – I’m too tired to take on learning enough about something to really try it. I feel like I need to know the inns and outs of treatment to take it on and I’m too tired to do that.
Lack of Support – If I had some more support, I know I’d give ‘X’ a shot. I just don’t want to take it on alone.
Too Sick – I’m too sick to travel and I’m probably too sick to try anything that might make me worse (and most things make me worse.)
My Doctor Didn’t Recommend It – Unless a doctor recommends it I’m not trying it.
My Doctor Did Recommend It - I would never really given anything a try my loser of a doctor would recommend.
It Needs More Study – Unless it’s been studied in clinical trials, I’m not going to try it.
Somebody Reported X Treatment Effected Them Badly – Why risk that happening to me? Better to be safe.
It’s Not Enough - I’m really sick. Why would these dinky little treatments (yoga, pacing, the right types of ‘exercise’, diet changes, etc.) really work on somebody as sick as me? I need a drug and I’ll wait until I get one.
I’m Too Old to Recover - Carol’s sudden recognition that ‘Wow’, I’m actually seventy’ clearly included an interpretation that maybe she just can’t expect really good health at age seventy anyway. This is despite the fact that there are plenty of seventy-year olds tramping up and down golf courses, and travelling the world. My father, for instance, has lifted weights well into his eighties. Yet, when we say ’70’ a certain picture arises and that picture doesn’t generally include abundant health.
I Want to Get off the Treatment Merry Go Round and Just Live My Life- Pat Sonnet said it well “There is something very liberating, however, in not being focused on the outcome of a treatment but being focused instead on living the life I have in ways that bring me the most satisfaction.” That, of course, implies you can’t have both, and indeed it’s difficult not to get wrapped up in the obsession of whether this treatment is going to work.
What Has Stopped You From Trying to Get Better?
Like the blog? Make sure you don’t miss the latest on ME/CFS and FM treatment and research news by registering for our free ME/CFS and Fibromyalgia blog here.