Addendum… about disclosure

My reasons for disclosing personal information have nothing to do with feeling pressured. I started this blog, because I was emerging from incredible isolation and confusion into a place where I could put all of these awful experiences into context. Sharing has an important place in all this because isolation is so often a result of the disease. Never have a group of patients needed community more. I often think that there should be a way for CFS patients to live together communally, for company and to share services and economies of scale.

One of the reasons that people become doctors is because they believe that it will give them some kind of immunity when illness hits home. Most doctors have little awareness of this, are in denial, and it causes a separation between doctor and sick patients. When the patient is a doctor it is even worse, because the doctor doesn’t want to identify in any way. My colleagues to whom I went for help were the first to abandon ship, in order to disidentify. It was much easier for them to think that I was weak or overreacting to little things. The LLMD’s to whom I eventually turned validated the experience, but were engaging in voodoo for the most part. The fear and isolation I was experiencing made that validation and any hope of improvement, especially for my daughter, too compelling to listen to my own doubts. Their treatment required a suspension of disbelief on my part in order to participate, but I did anyway.

I got mail last night concerned about my dignity. I don’t feel undignified for sharing experiences that others may be able to use to help themselves or their loved ones. There is redemption in helping. What is undignified is the harm that is done to the individuals of this community on a daily basis because of the disbelief that comes from the complete misunderstanding of the disease. I want to make it clear that there is no immunity. I had a privileged upbringing and life. I was a doctor. I’ve heard from lots of doctors who’ve had experiences like mine. The doctors and lawyers, scientists, rich people are just as isolated and without help as everyone else. The disease is a great leveler.

I am so far past caring what anyone knows about me. I have nothing to hide. I’ve been wronged over and over and so have many of you reading this. I get contacted regularly by people who want to die because they have no hope. I wrote what I did yesterday, and other personal things at other times, in hope that it will help someone out there to realize what I have come to realize. It can all change in an instant and you are not alone.

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25 thoughts on “Addendum… about disclosure

  1. >"I am so far past caring what anyone knows about me. I have nothing to hide. I've been wronged over and over and so have many of you reading this." Amen, Jamie!

    When a consulting specialist said that I'd declined too far, the permanent physical damage was so severe I would never recover enough to return to my career, I realized I had nothing to lose by going public with the truth about this damned disease.

    So what if someone connects my blog to my real name? (It's not easy, but it can be done.) My career is already gone, "thanks" to CDC's foot-dragging on finding a cause and a cure. Not likely a future employer will be googling me to dig up dirt, because there's not likely to be a future employer.

    Since I have nothing left to lose — as the lawyer said on "Harry's Law" last night, "there's nothing you can do to her that the gov't hasn't done already" — why NOT go public and let other patients know that "it's not just you"?

  2. >Thank you for continuing to be so open. I think many do not understand how this illness affects every aspect of our lives. I have been enormously fortunate in the extent that my family have helped me – not without some element of difficulty and disbelief, but still helpful. And this makes a difference to my health. I wish all families would support each other in the same way. Keep up the good work with advocacy everyone!

  3. >On dignity: as patients, most of us feel tremendous and inappropriate shame for having become sick and unable to work. We feel shame because other people have blamed us for our misfortune, including the slide into poverty ME/CFS so often brings with it, especially when multiple family members are ill. We have lost friends, and sometimes even family, because of the psychiatric stigma attached to this disease.

    Thank you for having the courage and the compassion to disclose, Jamie. You are a model of true dignity.

  4. >ISOLATION…I have often spoken about the need for a housing community for us. Somewhere serene, quiet and clean with services for those who need them and activities for those who can do them. I was even thinking about trying to live in an assisted living facility and lying about my age. Sometimes, just a smiling face can make such a difference. A meal brought with no questions asked. A playground for our grandchildren who could come and visit, but stay in a nearby hotel. I think there is nothing more devastating than to find out how disposable we are to the people we believe care about us. I understand that it's hard and they don't want to be faced with the possibility of it happening to them, but usually we were the ones that held them up in their times of need. There is nothing undignified about stating the truth about your circumstances. There is freedom in honesty. You are helping so many of us navigate our way through this sea of insults.
    Thank you for speaking your truth. You have helped me have hope and be able to look forward in many ways.

  5. >Re: denial. Before CFS I got cancer, but refused to believe I was 'one of them'. Until a good friend with pancreatic cancer reminded me that there are good people on this side of the fence, too. Once I realised, I was happy and proud to become 'one of them'. Now I am 'one of them' with CFS. So often, it takes scaling that barrier personally to realise there is a whole other community of real life on this side. We may lose families of origin, and it may hurt like hell, but there are good people here, and we are not alone.

  6. >So true about doctors confronted by their own sense of fear, failure and loss when faced with an ME patient… And yes there is no immunity. 'They' know this and I suspect some of the ones with power at the CDC and elsewhere are beginning to shake, deep inside.
    Thank you Jamie!

  7. >What Pat and anonymous said. There's no shame in honesty and in revealing ourselves. It's to be celebrated. Thank you Dr. Jamie! With love..

  8. >Thank you Jamie for this blog. I will very likely print a few of your post for my doctor to read and get a piece of humble pie. She really needs it.

  9. >Before I got M.E., I was a successful lawyer, university professor and author. I was a professional and kept private things private. That didn't help even a little bit as I got sicker and sicker. I was mistreated just like everyone else is who has this illness. It was when I found out I had tested XMRV positive, after I had been told that I had permanent physical damage from which I could not recover, that I suddenly lost all desire for privacy. I started using my real name on the internet. I told people I was XMRV positive. I admitted to having painful M.E. symptoms. I do not consider this undignified; I consider it honest. Like the old proverb "Death is the great leveler," this illness is also "the great leveler." At this point, when the illness has stolen my life, dignity seems irrelevant.

    Patricia Carter
    XMRV+, 24 years M.E.

  10. >Open honesty…. I support this, you and the WPI for this seemingly rare quality in the scientific world. With truth being the ultimate goal these are a powerful combination. Thank you for your bravery in sharing this, not easy, but through knowledge we gain trust and your blogs show you fit brilliantly on this…thank you.


  11. >Whether you were or were not dignified never came up for me in your blogs. What came up for me was their transparency and honesty – which I treasure. Think how many things people have NOT SAID – simply because they were worried about being 'dignified'. Perhaps they should worry more about whether what they have to say makes a difference and throw the 'dignity' question to the side.

  12. >My family Doctor said, after all the tests came back clean, in 1997: You may have CFS. You may be ill for six months, or more. I suggest you quit donating blood, until you regain your health…

    I was then sent around to all the specialists, more tests, more medications, no help. When a SPECT scan showed my brain was not getting adequate blood movement in many areas, my infectious disease doctor cried as he read me the specialist's report. "There is nothing we know that can help you, now."

    We are just humans. We are all going to die. We want to live as well as possible, for as long as possible. I have no illusions about returning to work. I am 64, today. hb2me :)

    Yes, when you are trying to do something important, Hell is other people.

    Now that I have no hope of again doing anything important, it is just Hell.

    I do what I can for my wife and myself. It is never enough, but, I like trying, you know?

    Some people!

    Al Marcy

  13. >Thank you for this post and for speaking out so openly. This disease is indeed a great leveler. And blogs like yours give us all a way to participate in a community of our peers, something I treasure.

  14. >Another wonderful blogpost. I agree with you completely.

    Noone is immune from the CDC, NIH and UK govt's war on pwME. I grew up on Park Avenue and went to the best schools. I was a lawyer at a well-regarded firm.

    Since I got ME, I have stood on a bread line and was nearly involuntarily committed to a psychiatric institution by my parents because they thought this was all depression as doctors had told them, among many other problems. This disease brings everyone to their knees. We need help, now!

  15. >Hi Jamie,

    It makes me happy that you continue to write your personal blog.

    Samuel Wales

  16. >Regarding the letter from your pen pal: I had no idea this was happening to people,let alone kids, with CFS. You are right, it is like a concentration camp.

  17. >I'm with you Jamie. I get so angry sometimes I can rage and rage… these people have taken medical treatment back to the Middle Ages.

  18. >for anyone interested ?? i have had the idea of some type of communual living myself. i went from a 'social queen' to being completley isolated.
    i have acess to land on top of a mountain in morganton nc called "burkemont mountain",overlooking the blue ridge mountains.
    (noooo :)….. no sales pitch here)
    my friends (simple folks) have some beautiful land for sale (maybe$5,000&ac) grealy priced & they also need the $
    i am a nature lover from heart, & i have been Greatly ! wanting to move up there (which i did for 3 yrs.but now,5 yrs small rurul southern smalll town)….but my dear (spiritual familys-my family, in tx) had a 'cow' thinking i would want to be all by myself on a mountain top.
    well, this desire is burning 'brightly' in my Heart rt now.
    a small rv village surounded in around the forest w/ a central 'place'to gather,when we want to (or can) little cobble stone paths…
    (beautiful ! rv's are aval now, because of cost of hauling around)
    if a 'rv' is covered my lattace, & 'looks' permenent, sec 8 ok's it.
    and it could be such beautiful,sweet,peaceful,village !
    caretaker on staff (i now have one full time-medicaid)
    anybody, ever thought about this ???
    & a BIG PS: hud have just anounced 'big grant $$' for this exact thing (even gulfwar vets). because of how sick i am, starting a 'new buss is out of the questions.
    i have learned to live & love myself, BUT….i am feeling very lonely ( what i would not give to have a cup of cofee, having a stimulating 'chat'and laughter filling the air !)

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