Monday, May 11, 2015

Comorbidity: ME, MS and Exile in Silicon Valley

The following post is written for the Myalgic Encephalomyelitis Awareness Day, May 12th, as part of the #May12BlogBomb effort to unite bloggers and spread awareness.


After 12 years of ME and numerous clean MRIs I began to develop new clusters of symptoms last year. I thought it was simply a new ME decline, the beginning of a long slide into oblivion, into very severe ME. Nothing to be done. It was encouraging, then, when my MRI scared the wits out of the ER doctors in my small-town hospital on a Sunday afternoon in November. An ambulance ride, admission, second MRI, a unpleasant neurologist later ("I don't believe in that" he spat, regarding ME/CFS.), I was diagnosed with Multiple Sclerosis. I demanded a second opinion, spinal tap, everything I could think of. I didn't trust these people not to misread ME.

Eventually I folded in the face of overwhelming medical evidence. After six months of disease modifying MS treatment I have some feeling back in my feet, most of the function back in my left hand and a return to normal excretory functions. Be late with a treatment, though, and they start to creep back. But the PEM, lack of stamina, cognitive impairment, the core of my ME symptoms remain unimproved.

There are lots of pamphlets and articles about coping with a new MS diagnosis. They say you will feel a range of emotions or perhaps one emotion in particular. Mine is anger.

I felt a tremendous amount of anger and rage. Not because I had suddenly had my life as I know it taken away from me by a progressive illness with no cure. Not because my future became uncertain and I would have to grieve the loss of plans I had made. I was angry because all of these things a newly diagnosed MS patient is supposed to lose, experience losing, fear losing, instability, I had already lost. Stripped away slowly over the course of 12 years, not with the support of the medical community and disease modifying treatment, but alone and under fire. And I was angry for everyone I knew and loved because our lives didn't have to be that way: in MS diagnosis I was experiencing an option we had been denied. The contrast was deeply upsetting

Now I had a "real" diagnosis and I was getting all sorts of privilege my people are still denied. I have the option to shed my CFS label (or SEID, whatever), legitimately say I have MS and receive kind and caring, even sympathetic, medical treatment. But every time I do this I am so angry for all those years of being ignored, dismissed, verbally abused. I am furious on behalf of my community that is still being neglected and abused as I betray them by hiding behind a privilege they do not have. I realize I am surprised by the lack of disgust and contempt in my clinician's expression.

People who knew me well were amazing, supportive, and the outpouring of love was humbling and touching. Beyond that, though, no one wanted to believe I could have both these diagnoses. As I searched for someone in a similar situation I no longer felt at home in the ME community. I can understand the reticence. I have always found it insulting that people with other primary illnesses pad their resumé with "CFS." To have ME/CFS is to be abused by medicine, left on your own for health solutions, to become a pariah as one's body undermines one's ability to take care of oneself. It's not a mantle one gets to wear because one is chronically fatigued while being taken seriously and receiving appropriate treatment for another primary illness. That is an insult to all of us. And I want to shout "But I've done my time! I suffered and was shunned as my body fell apart and I watched my world fall away. I am one of you! It's just that this other thing eventually also happened." Some were rude and condescending and I'd feel petty. "Yeah? That cure you're raving about? I tried it twice before you even knew ME existed," I didn't say. So many people have been sick for so much longer, I feel this is never okay.

I tried MS communities. Several members chastised me for believing in ME, for being in denial of my "real" diagnosis. They underscored the seriousness again, as if I had somehow misunderstood. Others politely wished me well. I advised and comforted someone whose world was exploding because she had become housebound. People talked about dealing with MS on vacation. I was stunned by the luxury of it, while at the same time recognizing that these were legitimate concerns, just very, very far from where I was.

It turns out many well people feel entitled to be sanctimonious jerks regardless of diagnosis. This is both comforting and disturbing. Socially, my "real disease" privilege is inches instead of miles. True, they look more ridiculous when claiming it can be cured by grapefruit. They can no longer deny it exists. They can no longer tell me its ALL in my head. It's a start. They can't take the illness away in favor or an assailed and denigrated character. Instead they minimize it to assert weak character:

"My daughter's friend has MS and she just had a baby," the dentist says accusingly and then laments modern life and extols subcutaneous B-vitamin complex injections.

"You're going to get your life back. There are people that have MS in town that no one even knows they have it," says the receptionist from my former neurologist's office.

"That's fantastic. Were they already disabled when they were diagnosed?"

She falters, " I don't know. I wasn't there then, but you have a chance to have a life."

"You understand MS medication doesn't undo damage that's already done, it slows down the progression?"

"You have to think positive! Of course you're not going to get any better if you think like this. How you think has a real effect on your health. They've done studies." 

I shouldn't be surprised. Her employer gave me the same speech 9 months earlier while refusing to order an MRI. Has medicine stopped considering magical thinking a sign of mental illness? Careful, there, don't they commit people for that? I managed not to say it. To either of them.

The other problem is that I'm still doing my time. The ME doesn't cease to exist when one receives a "more acceptable" diagnosis. It's still there. Eventually things don't add up. My MS is not severe enough to cause the disability I exhibit. I have severe symptoms and functional limitations, activity parameters that need to be taken into account for treatment, which have nothing to do with MS. An explanation is required.

How can I be disabled? I can walk. The gait is a little off, but I can. The doctors are sympathetic until they do my neural exam, which is nearly normal. And the room changes. Why is this hysteric using a wheelchair? The contempt and disgust return. No one believes "CFS" could do that. They tell me I've had MS all these years and that's why I've been chronically tired. "MS patients have fatigue." No one has a good answer for why my MRI would be clean for a decade while having MS. I am expected to commit to hours of daily physical rehab. I explain PEM and that "CFS" is a misnomer. One doctor throws the ICC at me. Another explains to me that this is very important and without it I will deteriorate, become stuck in my house, trapped in a bed, lose the use of my hands. They are basically threatening me with my own life! This is both very annoying and deeply insulting. I am now a bad MS patient, crazy and clinging to a controversial non-diagnosis out of fear and denial of having MS. It is implied that I am not taking this seriously. But I am. It may not appear so as, to me, this is just another in a long line of health disasters, The confusion, terror and loss experienced by a newly-diagnosed MS patient is expected to be new and even temporary, but it is where I and many other severe ME patients live. It is our normal.

And I am indignant. Disabled ten years, housebound five, mostly bed-bound and this is what is supposed to destroy my life? This? This thing with 100 million research dollars annually and medications, diagnostic tests and understanding physicians?

But I have a spinal lesion in my neck. Doctors' eyes widen when they look at the MRI. They try to hide it and don't tell me that in this place a lesion can cause quadriplegia. I no longer have the choice of shrinking away from the medical world in favor of being neglected rather than abused. I have to take care of that lesion (and the dozen or so others), but I have to do it in a way that minimizes the worsening of severe ME. And I am the only one concerned with the later.

I can't go home. There is no longer a neurologist to treat me and I am too motion-sensitive to make the 60 mile car journey to a neurologist (especially one who doesn't believe in ME or CFS) for every appointment. Even 10 miles is too much. Life has become a string of temporary housing on our way to the Mecca of ME/CFS treatment, where, hopefully, an ME specialist can convince an MS specialist that my "concerns" are real and need to be taken seriously. (Still working on this...)


Thanks to Sally Burch for organizing the May 12th Blog Bomb!

Use #May12BlogBomb on twitter and Facebook to find more blogs.


  1. Wow Emily.. that is a powerful post... xx
    Thank you for sharing - it cannot have been easy to write.

    1. Thanks Sally! Loving all your work. You've been up to so much lately. :)

  2. Hey Emily, I agree with Sally. Very powerful and I'm sure a dilemma that many in our community are struggling with. It's kind of fitting that I came across this blog though, because I don't feel the responsibility should fall on single individuals to change the stigma and medical ignorance associated with this disease.

    Happy May 12th friends,

    It is with great pleasure today that we announce the creation of "Advocating4ME", a multi-national group of grassroots activists working together to raise funds for the most promising scientific research studies for Myalgic encephalomyelitis anywhere across the world. If possible, I would encourage you to come over and check out what we have planned in the near future :)

    1. Thanks Lacey. Best of luck with your advocacy efforts! We need everything we can get.

  3. Emily.....Thank you for inviting me to read your blog. I believe it is helpful to vent our feelings, not only for ourselves, but it also, in my opinion, helps/validates others also suffering from this illness! Dar