The Mighty: How My Life Has Changed Since I Developed ME/CFS

Yes i see what you mean @Revel , I think some of the piece can certainly be read in that way.

I read it more like evolve = change and or adapt. I think 'evolve' is a bit of a buzzword these days to mean change/grow/become better (like you say). And that kind of thing often makes me want to puke tbh - like "stay positive" (- sorry to anyone who finds positive thinking helpful it's just one of my hot buttons).

But actually Evolution, as i understand it, is the process of having to adapt or die. It's not pretty and it's not necessarily about getting better, (indeed quite a lot of adaptations made in the animal kingdom for example are really ugly) it's about changing how you do things so that you can survive.

I suppose pacing is a bit like that really.
(And then people wonder why pwme are angry when they are told that they must not pace but do the opposite. ... 'just sayin')


I dont know how the author meant it, but it's a worthwhile thing to reflect on i think.

 

What I always find missing from these kind of pieces about learning how to live with ME is that they so often completely omit financial issues.

I know that these are complicated issues, and few folks want to read details about SSDI vs SSI (benefits programs in the USA). But the issue of how you're going to pay for rent and food seems rather important to me! No need for details but a simple mention of the fact would be sufficient.

Not having problems earning an income might affect whether you are able to see your serious chronic illness as a gift. Perhaps she is still able to work? Or maybe she is getting disability benefits based on her many years of being able to work? (Disability is not an option when you get sick quite young, and even those who qualify often have trouble getting medical tests that can prove their disability)

On the other hand, I don't begrudge anyone the ability to see their illness as a gift. Whatever helps you get through the day! As long as she's describing her own experience, not recommending this point of view as a one-size-fits-all solution for all ME patients, then fine.

But I do wish she had acknowledged how lucky she is that she doesn't have to think about where her next meal is coming from or how she will pay the rent. That's the lived experience of far too many people who have a serious chronic illness, whether it's ME or something else.

[ By the way, just to be consistent here, I should mention that I feel very lucky that I had my husband's support when I first got sick and that he's still with me today. I have no idea what would have happened to me if I'd been single or if he had not believed me/left me. ]

 

Hi All,

First, as the author of that article, I want to thank you all for sharing your opinions and as a writer I most definitely welcome them.

You are all right - and Dr. Carrot nailed it when she said that "The fact is, our experiences are often similar but sometimes the way in which we interpret them is very different, as evidenced by this thread" We each have the good, the bad, and the ugly in our lives. And how we perceive even the same events can be completely different. Different, but not necessarily wrong.

A few things I did want to note. While I may not have had ME for 20 years yet, I have had my share of hardships as most everyone has throughout their life. While my condition is incurable, I am also an incurable optimistic. Nothing, and I mean nothing, will change the gratitude I feel for the life I have worked hard for. Part of my life now is with ME and more. And that has changed my life in big ways. However, 20 years from now you can bet that I will be finding things to appreciate in my life, regardless of how good or bad it gets. That is at the core of who I am, that is how my brain is wired and that is the choice I have made. And yes, I do believe it is a choice. I can chose to be negative but I would have to guess that you can't tell me one good thing that has come from focusing on pain, being negative or judging others. In contrast, while being optimistic, positive and grateful will not cure you it absolutely opens your mind to the possibility of more and better perspectives, opportunities and outlooks. Don't believe me? A great option to check out is the book the Happiness Advantage by Shawn Achor. While its title is workplace focused, there's nothing in that book that cannot be applied to the chronically ill.

Also, a comment was made that perhaps articles get published because they have a positive spin. My experience has been to write to the forum and audience. When I write for the Mighty I focus on staying true to my own journey and my perspective. I aim to give hope and support to those I can, knowing I certainly can't reach all but I can reach some. However, I also write articles within my home state to local newspapers - those articles are much different. They focus on raising public awareness of ME, advocate strongly for the need for medical provider support, integration of ME into medical schools and the need for more funds for ME research. For as long as I can, I am going to do what I can to make my life and the lives of others with ME better. I realize I am just one person but I am a person with a voice and needs and I demand more of my medical providers, state, and country when it comes to ME. To that end, I am also forming a non-profit, partnering with the leading ME global and US organizations and others to maximize our effectiveness. I fight on my good days and my hardest days to bring positive change for those of us with ME. I am one person, a chronically ill person, but I am also a fighter. So please, before you judge me or anyone else, maybe consider there's a lot more to the story and ask if negating the value of positivity is really the best use of your skills and talents.

You all seem to be skilled writers, rather than take the time to tear apart an article I wrote about my journey in hope of helping others, take that same spirit and ambition and write your senators, support ME efforts in your locale, and most importantly, lets support each other. If you are already do these things - fabulous. If you aren't, what a great way to contribute to the cause. Does anyone here really need anyone else judging them? While I put myself out there and I accept what comes with it, having been judged for having ME by many as I'm sure many of you have encountered, I would hope that we could focus on building each other up rather than comparing, judging or criticizing each other. We can do better than this!

Thank you all again for sharing your thoughts! I do appreciate them and wish you all the best in your own journey with this debilitating disease. Let's hope with the funding Ron is getting that things will someday soon things change for us. Hope can be everything on a hard day! And I think Ron's grants and genius mind gives us much hope, along with the great efforts of all the other organizations fighting for a better life for us all.

My best,

Lisa Alioto

 

Other researchers are available ...sorry couldn’t resist

Thank you @Lisa A for contributing and becoming a member here to express your views

I was going to contribute earlier to this thread but somehow missed the boat.

What I would like to say is that I think perspective can change how you view a negative experience and there is no denying that it does change you ...I don’t think I would phrase that as a gift ...more just a learning experience /coming to terms with what has happened to you and getting on with what you have available to you.

I had a childhood illness that was pretty awful, made a lot worse by the way teachers and doctors dealt with it. That is a big life lesson when you are young but I wouldn’t say that I’m grateful for my experience. I do accept that it has made me the person I am now. Whether I am a better or worse person for it I don’t know and neither does anyone else? There is no point wondering what I would be like without the experience since time travel is not really an option (and that really is another thread topic). I also don’t believe that anything in this life is preordained or down to fate etc so I think that gives me a different perspective perhaps? Viewing things as random shit happening perhaps makes one less philosophical?

I’ve always known that my illness was not something I would recover from and I would always have to manage. It took me to my teenage years to really accept it and in particular how other people are with all,the stigma and nastiness etc.

When I got me/CFS in my 40’s, perhaps this previous experience helped me cope with it, but I look at this as another shitty life experience to deal with. I can feel proud of myself a little bit for coping with it day in day out despite all the adversity that it brings. But being proud of yourself doesn’t make it a positive experience?

If I had severe ME (im mild moderate) and for longer than my meagre 5 years , I’m not sure how I would feel ...pissed off possibly, frustrated, ground down by monotony, worried for my future? ...if somebody gave me that as a gift I may compare it to a turd through the letterbox.

If somebody gave me a cure tomorrow I would take it, since being like this doesn’t give me a lot of positive benefits. That’s different to making the most of things I think.

I don’t say this as a way of being mean or critical, just expressing my perspective vs yours. Perhaps there is a matter of coping ..using the word gift to sort of help come to terms with it ?

If that is the case I don’t have a problem with it. Each to there own and all that.

 

I disagree. It is possible to view the universe as a cold dark place where random shit happens and be philosphical about it. In fact I think you have to be.

Oh, I see, that kind of random shit. Well yes, if someone shoved a turd through my letterbox I would be unlikely to pause to consider the ultimate nature of excrement.