Blank Stares

My biological family is not more dysfunctional than others.  I lucked out there.  But, and this is a big caveat, it is not at all equipped to deal with a neuro-immune disease that has put an end to my always functioning perfectly and according to expectations and to being successful.  No longer can my parents proudly point to their only daughter—who made it out of dreadful East Germany after the wall came down and lived the American dream for a while working for a big law firm—to prove that their lives were a success.  The law firm job is what got me this sick in the first place, but that’s just a minor detail that one shouldn’t get hung up on and in any event, let’s not digress.  How embarrassing it must be to have a daughter with a disease that the government says doesn’t exist or is not serious or is all in patients’ head.  Imagine what others might be concluding this says about my folks’ parenting skills!  The shame!  The only conceivable way to control the damage here is complete denial at all cost.

I have often said that the way others treat those who have this devastating illness can be worse than the illness itself.  Those who know how horrific the symptoms of this disease are will understand how much emotional pain I am talking about.   Besides making insensitive comments or badmouthing, invalidating and ridiculing us, there are the blank stares.  Every patient who has ever tried to explain this illness to somebody else knows the blank stares.

Blank stares are the worst.  Those are the looks that say,

“I have no idea what you are talking about. I don’t believe you. And I will not spend any energy on trying to understand you because, quite frankly, what you are telling me sounds like bunch of BS. So, forgive me when I won’t even pretend that I am interested in what you are saying. And in order not to encourage any more talk about this disease that makes you tired, I will not ask any questions that could help to clarify things for me.”

There are different flavors of blank stares.  Some, instead of disbelief, are saying,

“This is so uncomfortable for me to talk about.  I don’t want what you are saying to be true because if it is, then I could be next.  And if it is, then I have to live with the knowledge that you are in a lot of constant pain.  And maybe most importantly, if what you are saying is true, then that means that the government is sacrificing hundreds of thousands of people and their families.  I can’t tolerate those thoughts, so I rather shine it on.  And if that means that I increase your suffering, then so be it.”

No matter what the dynamic in a particular case, all blank stares have one thing in common.  They scream indifference.  Blank stares are what make me question humanity.  They are much worse than the insensitive, “You look fine to me” or the down-putting, “I wish I could lie on the couch all day” or the behind-the-back, “How bad can it be?  What makes her think that she is more tired than the rest of us?” Blank stares are worse because they give us no way to counter the skewed thoughts and prejudices.  They are the worst because they tell us, without saying a single word, that we are not worth engaging with about a fact of our life that is so devastating that a fair number of patients cannot hang on any longer and decide that death is less painful that this “life.”  Blank stares are the worst form of being invalidated.

Instead of trying to understand, the blank-stare people will proceed to complain about how a recent cold has really messed with their enjoyment of a long weekend.  Of course, there is a hierarchy of the amount of pain caused by blank stares based on who delivers them.

Our daughter, Aimee, turned 2 years old last weekend.  A day before the big event, my mom, whose been visiting from Germany for 3 months, asked me what we would do on Aimee’s birthday.  I am quite aware that it is expected these days to put on elaborate parties for infants or toddlers with a bunch of other infants and toddlers, even though none of them, not even the birthday child, know what it’s all about at that age.  These parties are mostly for the parents and their friends and family and I’ve had a good time at the couple I have attended.   I would most definitely enjoy having a party for Aimee’s birthdays.  But we just moved to Incline Village a few weeks ago in order for me to start Ampligen treatment with Dr. Peterson and we don’t know a soul here. The truth is, though, that even if we were still at home, we wouldn’t have thrown a party or made any other plans that involve leaving the house for reasons that should be completely obvious to anybody who has spent a little bit of time with me lately.  I am sicker than I have ever been because the move to Incline caused a very serious crash for me.  I spend more than half of my time in bed.  I am able to take only 2 or 3 showers a week.  Sometimes, I can’t talk above a whisper.  I am in constant significant pain.  Just giving you a glimpse into what’s going on and certainly not the whole picture.  So, I was quite perplexed by my mom’s question and answered, “Well, no special plans.  I will try to get out of bed and I hope I can play with Aimee a little bit.”  Blank stare. No reply.

On the morning of Aimee’s birthday, I was lying on the living room couch in obvious agony while Aimee was excited about her new trampoline.  My mom asked me, “Where did you put my present for Aimee?”  She had left buying a present for her granddaughter up to me for reasons that are not entirely clear to me.  I told her the present was still in the same place that she and I put when it arrived via UPS, but that we would not be giving it to Aimee right then.  My mom had seemingly no idea why we postponed the gift-giving part of the day (except the trampoline) to after Aimee’s nap in hopes that I would be feeling a bit better then and could take it all in more and maybe even take some pictures.  I didn’t bother to try and explain it. I couldn’t handle another blank stare.

I have received a countless number of blank stares from my mom over the years, e.g., when I told her that reputable and credible physicians opine that ME is as bad or worse than late-stage AIDS or cancer and call it “another form of death,” that patients die an average of 2 decades earlier than they would if they didn’t have ME, that a significant number of patients are in so much agony that they end their own lives.

I guess Germans have never been accused of being overly loving or supportive.   And this probably has a lot to do with why I am not in Germany anymore.  But even for a German mother it takes a lot to completely ignore the fact that her daughter is going through the absolute worst time of her life.  If my own mother cannot muster more than blank stares, how can I expect anybody else to?  I can’t and, for the most part, I don’t anymore.

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39 Responses to Blank Stares

  1. This is a regretable fact for many of us living with M.E. It is a deeply hurtful,and unfortunately, an ongoing emotional “beating” to our hearts. I think you explained the behavior perfectly, and after reading your blog, I will never forget the term “blank stares”. Thank you for writing and sharing your experience. It will help a great many patients who will relate to your description of “blank stares”, and give them a way to put the trial of it all into words

    • thank you, michele! i have learned so much from blogs of fellow patients and things have become much clearer for me after reading them. i am very happy to hear that i may have contributed to somebody else seeing things more clearly. it’s very hard to understand what is happening when you have this cruel disease. sometimes, somebody else putting your feelings into words is very helpful. that’s what i aspire to. hugs, Jeannette

      • Your welcome. I have shared your blog on a number of pages on Facebook. I know that it is going to help others. Mission accomplished Jeannette. And by the way I should have mentioned how brave it was for you to talk about such a personal issue, that some of your own family members may come across, and be upset. It is not an easy thing to even write about besides the living with it. Hugs back to you. I hope your Ampligen treatment will be very helpful to you and you will get to do more things you wish to do with your daughter.

        • i saw your FB share and was very touched by it! i had huge hesitations putting out something that personal. but at the end of the day, i figured that i’ve had these feelings for a long time and i know so many others feel the same way. i just felt it had to be put into words. and the fact that my family members don’t speak any english made it just a bit easier for me ;)

  2. Micha'ele says:

    Thank you for your post, especially today. Today has been one of the worst days I’ve had so far, in the 25 yrs of having FMS. I awoke with pain over my entire body, not unusual, but today the muscles in my legs and back felt hard as rocks and severe pain to the touch, and a migraine that zaps my ability to think, total and complete exhaustion and a feeling of overwhelming fear that had reared its ugly head like never before. Today was only the fourth time when I felt like the pain and fatigue was so severe that maybe something other than FMS was wrong with me, “maybe I’m dying”…I manage to talk myself out of this mindset before an unexpected visit from my mother. I hear a light tapping on the front door, and ask my nine year old daughter who was being so sweet, lying next to me to keep me company, to go see who was at the door. Before she makes it to the front door I can hear my mother letting herself in, making comments under her breath as to the state of my home and where in the hell was everyone. I have no energy and I am in pain. I have no desire to see her or anyone, nor am I happy that I now have an unwelcomed visitor. I love my family, and my mother, but this disease has taught me something as of late, that the only time I get a visit or a call is because somebody wants something from me. She came into the room to give me a postal slip that I need to pick up and sign for a letter from the post office, that you guessed it, has to do with her and not me…another story for another day, but she pushes and wants to know when will I be able to pull it together so that I can go pick it up. I don’t have an answer for her, she’s irritated that I’m lying in bed and not responding to her requests for attention. She has nothing nice to say, and for the next twenty minutes I vaguely understand only a few comments, about how she’s tired of taking care of her boyfriend (whose 75+) because he’s ill with pneumonia and her dog who is elderly and on his last legs. I realize she’s complaining about things she has total control over. She chose her lifestyle, the boyfriends children who take advantage of her kindness and his money…
    She snaps at me when she realizes that her complaining is in vain and I am not feeling well enough to listen to her problems. She snaps “well , I’m going, you obviously would rather sleep…”. Really? I ask myself. Is this real? I suddenly feel sad. I’m completely thrown off that my own mother doesn’t have the patience or understanding to even try to understand what’s going on with me as she leaves without even saying goodbye.
    Thank you for your blog because it grabbed me by my bootstraps and pulled me from a dark place, I am not the only one going through this, I have empathy for you and what you struggle with. You have made your mark on my heart and please know that you and your family are in my prayers! We will get through this, maybe only one day at time, maybe only one hour at a time, but know that there are people who do care and thanks for putting a voice to our situation, our struggles and our frustrations. Much love to you!

    • Oh dear Micha’ele!

      Your comment really got to me. The cruelty of your mother and, more importantly, the love of your young daughter. I know there are many of us out there who struggle with our close family. Very few of us have a Chris Cairns (http://cfspatientadvocate.blogspot.com/) for a parent. It is such a tragedy! But quite a few of us have the kind of child you have. Children who are forced to grow up prematurely, but who grow into beautiful and mature human beings because of it. I can only hope that I will be so lucky to have a daughter like that. I am very happy you have this amazing child.

      I am more grateful than I can say that I was able to give you some support tonight. That is what I hope for when I put my posts out there.

      Yes, there are people who do care. It’s hard to remember or see it sometimes.

      Thanks for reaching out. sending you a big hug,
      jeannette

    • Mary Jane says:

      Not sure how you can actually love your mother. Mine has been the same, over all the 27 yrs of my illness. And she was bad enough when i was young and still healthy. So i’ve had a lifetime of it–you’re not alone. And i’m now considering the theory that some of us had a higher chance of developing M.E due to ongoing stress on/ and so damage to, the immune system (via parents) as children.

  3. You write so clearly and evocatively and I’m feeling for both you and Micha’ele, it’s a huge shock and burden when the people who are supposed to love us unconditionally, especially in this modern age of no judgements, are prepared to be so critical and harsh for us ‘just’ being ill. I don’t think you can blame German blood though, my own mother is from a warm, loving, caring culture but she missed out on that stereotype when it came to me and my illness.

    If you don’t mind me sharing a link in my comment, this is my story: http://idiosyncraticeye.wordpress.com/2012/04/08/two-little-letters/

    Understanding and support would make all our lives with ME so much easier, to be believed and to be taken seriously are very precious gifts and privileges.

    Stay strong, I’m sorry to hear of your relapse too, and make the most of your moments with your daughter, however they are paced. :)

  4. Irene says:

    Dear Jeanette,

    After the botched-up job I did of comments on your blog, as well as to a visitor to my blog by my comment to a comment, thinking I was writing to you, when I was so overwhelmed after I read your reply to Dr. Lapp (I was completely brain-fried), I am hesitate to write a comment again.  I can only hope you understand what strong emotions can do to a brain and the brain fog it creates and forgive me for my bloopers, as well as my emotions.

    Today, you’ve managed to hit another nerve, several nerves, in fact, but I mean that in a very good way. I wanted to cry when I read the “blank look” thoughts/descriptions because in 37 years of having this horrid illness, now in bed almost 24/7, I knew exactly every word and thought you wrote and every emotion you expressed.   

    Ah!   But it got “worse.”  It’s just that you also described such a very different type of thing than what I usually hear, and that is, about your mom and her “Germanness,” if that can even be made into a word!  You see, I have been going through something quite similar as what you described, something so many of my friends have never understood, even when I was young and healthy, because I lived way too any years in a society where I had this very different mom, this “foreigner,” Russian no less (during the Cold War when people did not understand that my parents LEFT communism), who was extremely strict, did not believe in any praise for her children (indeed looking for children’s faults was the norm) and expected her children to do MUCH better than the spoiled “American” kids, though I was born in this country and was an “American kid.”  You can well imagine how much she’s NOT been able to accept my illness!  This illness came on the very heels of my stopping my PhD work and marrying (we used to do that back then) – I got sick in grad school and was never the same, but pushed on, with my illness getting worse every year.  My mom would constantly tell me that my husband spoiled me, as well as say that my only reason for my “pretending” to be ill was so that I would get even MORE attention from my husband.  What mother thinks this way?  It’s the mother who wants her children to succeed in a world that is quite foreign to her, has much baggage to carry, and much to prove.

    I really think that there is a mentality at work here that is uniquely a first-generation mentality, the one that pushes the children to succeed against all odds.  I was sent off to Russian Orthodox camps run by the Church each summer and it was a relief, on the one hand, to be around other kids who were under the same pressure, but it was a nightmare to be around so many accomplished kids…not that I was unaccomplished.  However, those kids have gone on to be EXTREMELY successful in their professions, famous even…even gracing the front of Time magazine when the magazine was in its prime.  My mom, on the other hand, has this child who has this illness that was imagined (it took 15 years to even get a diagnosis!) and then it was an imaginary illness…nothing to brag about, as would have been the casement, perhaps if I had some sort of “sexy cancer” – and then died!

    I’ve worked hard to be a different kind of mom and though I know I have my flaws, I managed to have three wonderful “kids” who I think were shaped by my illness to become extremely caring and compassionate people.  My daughter, for example, is the teacher of severely affected children with autism, has her own self-contained classroom, and makes great strides with these children, the kinds that make their parents weep with incredulousness and gratitude.  And yet her grandmother complained – often and vocally – that my daughter would work with “these sorts” of children, being very upset that after going to a very prestigious university, etc., and then instead of going into politics or some other “lofty” profession (such as law) as she’d always planned on, she turned around and went into such a “non-prestigious” vocation as teaching, and not “normal” kids at that.  When my mother actually had the nerve to say this to my daughter, instead of just to me, I loved my daughter’s answer: “normal” kids (to use her grandmother’s term) are boring!  

    I’m sorry I got a bit carried away with such a long comment.  You do manage to know how to hit “nerves” with me!  (Grin!)  I do hope you think of me when you next feel guilt from anyone for not planning the perfect birthday party with bells and whistles.  Had we known (my husband and I) that the worst thing I could be doing was pushing myself so hard with dinner parties (we did THAT back then too!) and perfect birthday parties, maybe today I would NOT be in the abysmal condition I’m in.  My biggest message to everyone I meet is: take care of yourself. Do not be bullied by anyone, and certainly not by society…especially a society so full of people with blank stares!

    I’m happy I’ve discovered another great place to meet other CFIDS people!  Thanks so much for your brilliant piece.  I wish you the best of luck with your Ampligen adventure and look forward to hearing about your progress.  The very best of luck to you!

  5. Anonymous says:

    Thank you for this blog post! It’s good to know I’m not alone in having these experiences.
    Unfortunately, my family don’t contact me anymore. Every one of them, except my dad, has been abusive to me about having (severe) ME.
    The last time my mum came round was just to use our house as a base camp for some meetings she was having nearby. I am bedbound most of the time, and have the curtains drawn because I’m very sensitive to bright light. Despite her knowing this she flung my bedroom curtains open and said “come on! You can’t live your life like a hobbit in the dark!!”
    I tried once again to explain to her about ME. I told her about the recent chest pain and palpitations and she laughed, saying “ha! You don’t seriously believe there’s something wrong with your heart now?? … I think you believe you have illnesses that you just don’t have… oh and you shouldn’t be on all these medications like morphine and Fentanyl – they’re the only thing that’s making you ill!”
    This is just one example of the awful things my family have done and said since I got ill.
    I’ve decided I will no longer take this kind of abuse. I wouldn’t accept it from a friend or acquaintance, so I won’t take it from family either.

    Thanks again for your blog. I will share it widely.
    xx

  6. Unfortunately, Jeannette, many people with M.E. will find your experience familiar. I didn’t get M.E. until I was 41, and by then both my parents were deceased. I had eight siblings, though, and they all showed me the same kind of behavior as your mother and Micha’ele’s mother. When it became apparent to them that I could no longer help them with their problems, my brothers and sisters became too busy to even talk with me by phone–except for one dear brother who still calls me several times a week with very thoughtful, cheering calls. I feel very fortunate, though, to have my daughter, son-in-law and grandchildren who are, I think, exceptionally loving and caring to me.

    I discovered people I had known for years who I had thought were friends were really just playmates; when they discovered that I was now too sick to engage in entertaining activities, they disappeared from my life.

    So the illness has had mixed results for me. I learned some unpleasant facts that I could have lived without learning. On the other hand, I know the few friends I have left are true friends. And I am very grateful for the loving family I still have. Their calls and visits and their thoughtfulness always surprise me just a bit because I have learned not to expect so much. Maybe that is the point: I have learned not to expect kindness; and when my family or friends show me kindness, my heart fills with love and gratitude.

    And of course, the friends I have met online are also a blessing. Sometimes the online friends are more real and more understanding than the ones in my “real” life.

    Thank you for sharing these experiences, Jeannette. I know it can’t have been easy. Knowing we are not alone in experiencing these things helps.

    Patricia

  7. Marian Smartt says:

    I have read the post. Very compelling. All to real. In my case it is my children who do not understand and give me the ‘blank stares’…if they see me. I am now too ill to travel to Park City, UT (elevation 10,000 ft) because of the cross country trip (mostly because of this travel) and also the elevation. I am on oxygen, and frankly 10,000 ft scares me!

    I hope to read everyone elses responses…after I take a rest! To those who think I actually ‘LIKE’ sofa time ha…another ‘rest’…I am so sick of resting. So sick of resting. So tired of the loneliness.

    I think I am cranky today. Sorry, as I have much to be thankful for and I am very blessed.

    Marian

  8. Sarah says:

    As a fellow CFS sufferer, I’m very sympathetic. Ten years and counting, lots of “huh?” and worse comments and attitudes. Friends lost, relationships with family irrecoverably altered. It did however, give me the impetus I needed to radically clear my life of those who don’t or won’t understand. The added pressure of controlling, narcissistic, or otherwise dysfunctional people can be like a binding weight upon our already burdened bodies, minds and spirits, and I swear I got a little better over time when I released myself from the need to explain or the desire to accommodate or adapt or please.
    I do feel I need to say this though- my husband is a hospice nurse and I know he’d have a hard time agreeing that ME/CFS is as bad as late-stage AIDS or cancer. I don’t know that the comparison needs to be made, don’t believe that we need to justify our illness to anyone. I do know that anyone who has witnessed a death by AIDS or cancer might hesitate to compare what we go through in terms of sheer physical suffering, and that’s a comparison I’d be uncomfortable making or agreeing to. That said, I no longer believe I have to excuse or justify or explain or compare my state of health or my suffering to anyone (not even my doctor!).

    • Jamie H says:

      Sarah, I like your post. It is well said and I agree with it… most of it. Respectfully, I’d like to say that the level of CFS that you experience may not be akin to late stage AIDS or cancer, but some people are much, much sicker than others with this disease. Have you seen Voices From the Shadows? Some of them are so desperately ill that late stage AIDS is indeed an apt comparison. And I believe it was a doctor in an AIDS clinic treating both AIDS and CFS patients who said that if she had a choice between the two diseases she would rather have AIDS. I fully agree that justifying and excusing are a waste of emotional energy. Educating and explaining, however, are worthy endeavors. I believe the comparisons to AIDS and cancer are simply attempts to educate the public regarding how serious the more extreme cases of CFS can be, and I have rarely heard those comparisons made without a qualifying statement to the effect of explaining that CFS can cause many different levels of disability and not everyone is effected so extremely, only some of the more unfortunate. To those unfortunate CFS patients who ARE that ill, who DO experience a level of disability that extreme, your comments could hurt them just as the comments of the healthy people in your world have hurt you in the past. Please don’t invalidate those patient’s very real, very extreme experiences.

      • Irene says:

        Thank you and well said, Jaime, with all due respect, Sarah. I have been hunting for the name of the researchers all evening. Did the last name begin with a P? I can just see the quote…it’s from around 1997 or even earlier, a time when AIDS was much rougher than even today, when AIDS was still pretty much a fatal disease, best drugs notwithstanding, when that quote was made. I wasn’t going to write back because i don’t want war amongst ourselves, but boy, I just couldn’t stop thinking about it. maybe now I can “rest in peace.” I don’t want AIDS but I don’t want this DD either. I’m sick of it…37 years of crud is enough! And Kathy D., I’m originally from NYC; when I moved back, I was already sick in NYC running around to everyone with this mess. The rest of my wonderful nucleus family goes back to NYC way too often…I now have an excuse not to go with them.

        • Sarah says:

          No need to “start a war”, as I see it. We each have our own opinions, and it’s a painful subject for all of us. I knew when I responded that people would disagree- I also know we all have felt at times that we are in a “war” against those who deny our reality. Perhaps I don’t “get it” because of where I am on the scale, sick enough to not work to have lost friends, not sick enough to be bed-bound 24/7. Peace, fellow-sufferers.

      • rosa says:

        It was an expert and long term experienced CFS/ME doctor who made the comment you are referring to. As she made this comment in a very public interview I am sure she thought it was important to draw this comparison. Some people sadly are this ill and often have no carers. It is simply devastating to think of this happening to anyone. I have a number of close relatives who I watched dying of cancer, one in a hospice, and understand fully the severity of the comparison.

        • Irene says:

          Ok…I think that I have part of the “mystery” solved.
          First, I am inclined to believe the reason we all have this quote we’re tossing around and giving an almost “urban myth” feel to it all is because, in my research tonight, I’ve found that there have been a few doctors who made similar comparisons and quotes. I’m not getting into whether it’s right or wrong to compare and/or to “explain” how bad ME is…just that these quotes are out there.
          Secondly, I wrote earlier that I thought the last name began with a “P” and knew it was before 1997 for a number of (personal landmark/hallmark?) reasons.
          EUREKA! I have found the two doctors – I’d thought that they were husband and wife but didn’t want to push my luck and poor memory (understatement?!) by mentioning that and then have to backtrack and make apologies for any “misinformation.” I found the names of the doctors whose quote I discovered (absolutely?) no later than early 1997: Drs. Audius Plioplys and S. Plioplys. I do believe that they may very well have been the ones to have made this sort of statement first.
          It was an absolutely stunning and incredibly brave and daring thing to do at the time…hard for many, now, to understand/remember how much so. I need to track down the quote I was looking for and to find out what they were doing at the time as it looks as if their careers have had several twists and turns. But it’s good to have part of this “nutty” thread figured out. Frankly, I personally am satisfied so much so in finding their names that I don’t even need to go hunting any more. What was bugging me was that I remember so few things that it was frustrating to forget something I remembered so well.
          Huh? I think that last part of the previous sentence can only be understood by a person w/ an ME brain! ;)

          • cfids warrior says:

            Hi. I just wanted to send you a couple links to quotations, in response to the question of what doctors had referenced the level of debility in ME/CFS and HIV/AIDS. (I received an email that there was another post or comment in your blog, in which someone is trying to get to the bottom of the source of MD quotations, but I cannot see it in the blog to reply to it.)
            First, the following is a quote from Dr. Nancy Klimas in response to “Readers Ask/ Consults” in the NYT Oct. 15, 2009. http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/
            “But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.
            I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it. ”
            Secondly, here is a link to a wiki in which someone has compiled similar quotations. http://www.mecfsforums.com/wiki/Quotations_about_M.E.
            I hope this helps.
            Warrior.

    • Whitney says:

      I respectfully, but fully disagree with your comments about CFS and AIDS Sarah. I’m honestly quite shocked by this comment

      How can you say we don’t need to explain or justify the illness to anyone? Most of the population doesn’t even know it exists. There’s a complete lack of funding or support. The last thing you should be doing is downplaying the seriousness of CFS/ME because you happen to be lucky enough to be better off than others. AIDS and Cancer have a lot of awareness. Yes, they are also serious illnesses, no one is denying that. But what Dr. Nancy Klimas is pointing out to people is that CFS/ME can be just as debilitating as late stage AIDS (as it was at the time of the quote, it may in fact be better now). The difference is that CFS/ME can last, in a similar state, for decades or entire lifetimes. And not only that, people with cancer and AIDS are for the most part cared for and understood. No one with AIDS is thrown into a mental ward, given psychotic meds and nearly drowned in a swimming pool in attempt to make them “stop pretending to be sick”. In today’s world they are for the most part, understood and cared for from day one.

      I can’t walk, and I can’t even get a wheelchair from my insurance company…

  9. Kathy D. says:

    Wow! What a heart-wrenching post. It’s so hard for me to think of sister ME/CFS sufferers being so mistreated by immediate family members, yet I know that it happens. It’s just terrible.
    I don’t think anyone owes anyone else an explanation or justification. I think we have to be strong and firm with our limitations or needs, i.e., “I have a migraine; turn out the light, keep the curtains drawn. Don’t put on music.”
    There’s a lot more material out now on symptoms, biomarkers, etc., I always say “Dazzle them with documents.” If one wants to (or can), direct people to the studies by Dr. Komaroff, the Lights, etc. Now even the CDC, very late to the game, did a recent test showing less blood flow to the basal ganglia of the brain in people with ME/CFS than healthy people. The CFIDS Association research page has lots of information up on research. (Even direct people to Drs. Malle and Fluge’s research information.) (And if language is a problem, some articles may be translated by Google — I just used that for something.)
    Also, my opinion is “Do not take any crap from anyone,” relative, friend, whomever. We don’t owe it to anyone to do what they want since we are ill. They don’t get it. Too bad. It is hard enough to cope with this disease, and not fair or necessary to cope with ridiculous behavior by anyone.
    My mother didn’t get it, but now she’s nearly 95, is out of town and has dementia. I can’t travel to see her. My sibling sort of gets it, but we don’t talk much.
    Of friends, a few get it. One gives me blank stares when I don’t feel well. I say something and I get a blank stare, so I get it. She’s yelled at me for not doing things, but I have said I can’t and not to ask me again. (And she was the health care professional! But this wasn’t in the textbooks 25 years ago, so it doesn’t exist.)
    So mostly I sit at home in my room (or at the computer) and read my mysteries, watch tv, go online to the ME/CFS community and my favorite mystery reviewing bloggers. I make a few calls, but not many any more. And I go out a few times a week. One walk to the bank, library and Whole Foods (all within four blocks) wipes me out. That’s the way it is. I love my apartment, TV and books.
    I have complete sympathy with everyone who is faced with this not only insensitivity, but callousness. And you know what? Do not take it.
    Also, Jeanette, with Aimee, the most important thing is that you are there for her, you show her affection and attention. So do not feel badly about anything, including the birthday party.
    I have a feeling one day there will be a moment when things come to a head with your parents and you just say what you have to say, fiercely and protectively of yourself. And you have a right to do that! To say it loud and proud! Protect yourself, the first rule of living. (Maybe you have to declare a vacation from each other for awhile or just say, “Until you understand my limitations and needs, we should have a break.”
    And just be with those who are supportive of you.
    I wish you the best with the Ampligen, and hope that you find a good support network in Incline Village. You certainly have one online. (You can email me if needed).

  10. hello everybody,

    just a really quick note. i will reply to all comments probably on the weekend. ed and aimee are moving back to the bay area on friday because it’s just been too hard here in Incline Village with aimee. incline is just this really weird place (i may write about it) and raising a 2-year old is very hard here. anyway, I am trying to direct packing/moving traffic right now. i am incredibly sad because i will not be able to visit them often, but this is what we need to do to give ampligen a chance to work. i need to get more rest than i have been getting since moving here. so, after the move, i will come back to this blog.

    hugs to everybody. your comments mean a lot to me. can’t tell you how much.

    jeannette

    • Irene says:

      Best of luck, Jeanette! You are making a very difficult decision, but deep inside, from what I know of a couple of people who went through the Ampligen thing (about 10 years ago?) it was really rough and moving closer was wise, family staying behind was best after trying the other way. A hugely big decision only you can make, everyone is different, but I just wanted you to know about this to make you more comfortable with this last development and difficult decision. I know Aimee needs her mom as healthy as possible…so you are making a supreme sacrifice! My thoughts are with you! Positive energy (only half joking to make you smile!) and all the good stuff! :) and ;)

  11. Kathy D. says:

    Jeannette, it’s understandable that your spouse and child had to move back to the Bay area.
    However, one suggestion: Skype with a camera attached. Aimee could see you and you could see her and talk to her every day or several times a day. This technology has helped so many families I know who are separated.

  12. Shirley says:

    I am so sorry to hear that the person you were talking about in your FB post who gave the blank stares was your mother Jeannette. I had no idea. Makes me sad. “Blank staring” from your own mother is the worst, it must be devastatingly painful. Since my own mother had a lot of German in her, I can get an idea of the criticalness, the lack of praise and the self centeredness. She did not live to see me become ill as I became ill late in life, but she did see me struggle to go back to school as a single parent without much support or discussion, and then get through graduate school. When I became pregnant at 15 her only response was ” How could you do this to me?” So I get what you experienced Jeannette (and others). But whenever I would get particluarly disappointed with her, I would remember that that is how she was raised and it helps me to have some empathy for her. But I agree with what others have said above, maybe letting her know that because of your needs right now that you and and she will need to have some distance. If you can’t do this in person maybe in writing? I like “dazzle her with documents” too! But only what your stress level will tolerate right now. I can’t imagine what stress you will be under in the next weeks and months. But hopefully by then the ampligen will start to kick in. Yay!! (If you get lonely in Incline by yourself pm me anytime!)

    Big hugs to you Jeannette. And to all the others here too!

  13. Shirley says:

    PS Irene you do NOT in any way sound like a moron!!! I loved reading your story!

    • Irene says:

      Shirley, you are a sweetie for saying that! Thank you!
      I’m sorry, but I had to laugh about the pregnancy at 15 and your mom saying, “how could you do this to me?” since that would have been my mom and definitely WAS in many other situations. I only laughed because it is just sooooo crazy and there’s a bit of the “misery loves company” mixed in as well, the validation (such an important word to those in our community of ME’s) of knowing not all moms are out there cheering us along every step. I am, however, so very sorry for all you had to go through in all of your “stuff.” But you sound like an incredible human being coming out of it all, and even understanding where a lot of these things come from. I hope I get to know you better!

  14. dfids warrior says:

    Trial post to see how I have to sign in.

  15. cfids warrior says:

    Oops. Wrong letter in name. Must use magnifier. Never mind anyway. I was going to post a reply to the sideline about AIDS and level of disablement. I have particular qualification to address the issue, as a health care provider who deals specifically with quantifying functional ability and disability, and a person w/ HIV/AIDS for 15 years, but ME/CFS for nearly 25 years.
    So I can say I do have first hand knowledge that ME/CFS is far more devastating to one’s health and life, over the long term than HIV/AIDS. And having worked (when I was still (barely)able to work a few hours per week (in order to keep my all-important health insurance for meds, as I am uninsurable privately) with many elderly patients with CHF, I have seen the look of concern and alarm on their faces, as they sat waiting for me to catch my breath after kneeling beside their wheelchairs (dysautonomia not yet recognized even by me) asking me, “are you OK honey?”
    I finally had to collapse and quit work altogether when I was much more ill than my home health patients. After pushing myself too hard, I could barely get out of bed except for toileting and very short meals prepared by someone else (or simply cold cereal).
    Oh, and by the way, to Sarah, regarding hospice, IF one gets sick and is dying of an opportunistic infection, if you have HIV there is often the better option of hospice. If one only has ME/CFS, or most likely no diagnosis and is likely misdiagnosed psych, there is no hospice option. Hence the long lonely struggles at home with no support nor treatment (especially if one lives alone as I do, at times barely able to acquire healthy food or to bathe) the suicides, and the deaths in hospitals, of people w/ ME/CFS.
    This is the first time I have ever in any format disclosed my HIV status on the internet. I am probably not in my right mind tonight. But I am just in that place between hopeless despair and hope, that makes me think that maybe is the way I will be able to help the community. Although it probably puts the nail in the coffin of any hope for a return to my career, perhaps if it helps anyone, I can feel that my life is of some use to someone again.
    In the years since I have been able to work, I have gotten somewhat better (finally getting an ME/CFS specialist, formal diagnosis, and some treatment) and then worse again, and now perhaps am a bit headed back toward a midpoint.
    If this is as well as I get, I will take it, over the wretched existence I had for so many months of each year. I only hope that I can begin now to put every ounce of health I have into helping others w/ ME/CFS, especially those w/ ME/CFS who are as ill as I was or more severely ill, especially for long durations, with no social support whatsoever. They are out there suffering alone, barely able to lift a finger, or look at a computer screen, perhaps with no income whatsoever, as the have no access to proper physicians or diagnosis to acquire even meager social security benefits.
    OK. I have gone on too long. And I am lost my train of thought – going into a blank stare. haha. oh, funny, that was the title of the blog entry…
    Thank you anyone for listening.

    • Irene says:

      Not too long and beautifully written, “Warrior”! You are ever so brave for telling us all you are going through, to explain the subtle (ha!) differences of each topic you brought up and I can only say that you’ll be in my thoughts that you get better – and I so hope you can… because you truly are helping so many out there. I salute you, very brave and clearly compassionate and empathetic woman!

      • cfids warrior says:

        Thanks for the thoughtful reply.
        I keep thinking of how beautifully the author (Jeanette?) put into words what the “blank stares” convey in the original blog entry – they “scream indifference” and that people do not bother to ask questions to try to understand, or would rather not be faced with knowing about such unpleasantness, even if it increases our suffering. I think we all know the feeling. I always want to scream back, “if you only knew!”
        It does help so much at least to share our compassion and and empathy with each other.
        Peace,
        a warrior

  16. Natalie says:

    I cannot begin to express how much courage this blog post and its comments have given me today. I went back to work as a massage therapist six weeks ago — long story why — and this week I am sick with a cold I cannot knock, and have to be at work. It has felt so good to be able to function again, even minimally; it took two years of rest and a lot of supplements to get here. Staying positive is so important right now, but this week, little doubts are creeping in about whether I can keep this up or not. Like many of you, I have had little to no support from family. My mother, now deceased, could match sharp-tongued comments with the best of them. I have siblings who think I am “just mentally ill.” My Mercedes and BMW driving brother at one point when I was homeless pointed an angry finger at me and screamed, “I don’t care if you’re on the streets!” He was angry that I had broken off contact with family ten years previously, for good reason as this post illustrates so well. Fortunately, two of my sisters woke up to the truth of my situation, one because her husband is now on disability with cfs and SHE had to go back to work at age 54 with a heart condition; the other, because one of her best friends is on disability with cfs and tells her a lot about it.
    I am now in the process of dealing with an employer who does not know I am ill.
    Two days ago, I had the wonderful triumphant experience of signing on an apartment, my first real home in seven years. (Room rentals most of that time — the stories I can tell!) Now I am ill, probably from stress. I had almost no sleep last night with the cold, and this morning it is all I can do to pep talk myself that this is a speed bump and not the beginning of a bad run. This post just really has buoyed me up for the challenges ahead, like keeping my new job and my new home. Thanks so much to all of you!

    • cfids warrior says:

      Bless your heart. Hang in there! I’ve been right there so many times – the employer who can’t know you’re ill, etc. It can feel so lonely. Sleep is so important. Sleep disturbance/ insomnia is always the first sign to me that I have overexerted and am in the beginning of a relapse.
      It is sad how some of us have even known homelessness. Too bad people think we are “just” mentally ill.
      I had an ex-boyfriend in Florida (changed his mind about marrying me when I collapsed and had to stop working and had no income – also no more sex as too ill) whose ex-wife had a sister who lived in a car at a park we used to go to. I always wondered if she were also struggling with ME/CFS.
      Anyway, it’s true, this blog and the comments do share so much courage.
      Peace

  17. Kathy D. says:

    Jeannette, how are you? How is it going on the Ampligen?

  18. This is such a good post, I totally agree with you, sometimes the way people treat you is worse than the illness itself

  19. Julie says:

    Jeannette,

    Thanks for writing your blog! I love your writing style and pray you respond well to the Ampligen. I’m so happy you have a loving husband and a daughter! I was married and hoping to have a child but that is not in the future any more. Do you have help while you’re staying in Incline Village? I hope so because I know I would not want to be alone while going through treatment.

    I’ve read a few of your posts as well as the comments that followed and they resonated with me in so many ways. I started to write a lengthy reply that essentially echoed the disappointments and traumas others have experienced – only to delete it. It was depressing but it did have a benefit. It reminded me of lessons learned over the years that I seem to have forgotten.

    We can’t change people but we can change our reaction to people or how we deal with them. I love my parents and they ARE giving and compassionate in many ways. They and many/most others just do not understand my/our illness.

    I’ve worked in clinical laboratories and healthcare information technology for years and I have the ability to articulate this illness to my parents (and others) but they are impatient, unwilling, and often “too busy” to understand why I’m barely able to do anything but work anymore. I truly think many today have tried to cram too much into every day/week/year without acknowledging the importance of rest, reflection, and redirection.

    Whether it is parents or “friends”, the recurring themes seem to be: 1) medical “experts” in magazines and on the TV indicate this illness is possibly all in your head or remedied by exercise and a good psychiatrist, 2) the inability to comprehend medical information, 3) impatience – or unwillingness to listen or learn if they do have the ability to comprehend, and 4) “my time is precious, I would love to see you if you fit into my schedule but I don’t have time to listen and learn about your life – I have to much to do!”.

    Having been successful and active prior to becoming ill, I do know I was not always as patient with people outside of the hospital (who appeared healthy) as I was with those I knew to be severely ill physically or mentally. Many with this illness enjoyed life to its fullest and were “Type A” personalities. I was one myself. Still am mentally but the body ain’t willing!

    So much for a “brief” comment! Your blog obviously touched me in so many ways as it has others. Please continue to blog as you are able!

    Thank you again for your courage and perseverance! I’m thinking of you, your daughter, and your husband. Praying for your healing!

    ~ Julie

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