Blog: A disease identity crisis

[AndyPR]

Blog by Jamison Hill that discusses some issues that, hopefully, sooner rather than later our community will have to address, at least in some way.

I’ve had MECFS (chronic fatigue syndrome) for more than six years. In that time my mentality has followed a meandering path from terror to confusion to denial to acceptance to advocacy. Now, however, I find myself in a different frame of mind that is a result of new developments in my own health as well as theories of patients and top researchers in the MECFS community.

As I wrote a few weeks ago, I was diagnosed with Lyme disease in January 2017. It wasn’t long before this that I finally accepted (and understood) my diagnosis of MECFS and decided to get more involved in the community, even advocate for more government research funding. So there I was, just settling in with the singular focus of MECFS, then I had to try to understand a whole new disease. It was like studying for an algebra exam, only to find out the test was on geometry as well.

After the Lyme disease diagnosis I had to share my focus and energy between it and MECFS, which admittedly I haven’t done very well. I’ve yet to give Lyme disease nearly as much effort as I’ve given to MECFS. But for legitimate reasons: (1) I was diagnosed with MECFS first, (2) I’ve had it longer (I think), (3) I’m not entirely convinced my Lyme diagnosis is accurate, and (4) MECFS is more misunderstood and trivialized than probably any other disease, including Lyme disease.

But in addition to Lyme I have other conditions like POTS (postural orthostatic intolerance syndrome) and diabetes insipidous. So basically I’m a chronic illness collector, however involuntarily, who specializes in the misunderstood diseases. I’m scared to even consider that I might have other diseases that fit the mold, like fibromyalgia.

All of these diseases have come together in my body to thoroughly confuse me. They have created a disease identity crisis in my mind. Which one do I associate with? All of them? Just MECFS?

If my collection of chronic illnesses wasn’t enough, I’ve noticed that there is a theory within the MECFS community becoming more prevalent, and it has served to only further my identity crisis. The theory mentioned by both patients and MECFS researchers is that the disease might actually be multiple diseases, not one mysterious illness.

More at https://jamisonwrites.com/2017/09/03/a-disease-identity-crisis/

 

[A.B.]

Freud did terrible damage to patients and medicine when he claimed that unexplained physical symptoms are the result of repressed emotional issues. These ideas went on to influence medicine and psychiatry and today there are many poorly understood conditions that were never seriously researched because they were uncritically viewed as psychosomatic. If you have onset of multiple physical symptoms early in life and standard lab tests are normal you can be labelled as having conversion disorder, somatoform disorder, or something similar that suggests the problems are all in your mind. Even though this is how genetically determined mitochondrial, neurological, or immunological disorders can present. These patients have been left to the psychosomatic branch of psychiatry which is incompetent at science and still following Freud's ideas.

A while ago I read this article:
Decades of delayed diagnosis in 4 levodopa-responsive young-onset monogenetic parkinsonism patients.
https://www.researchgate.net/public...young-onset_monogenetic_parkinsonism_patients

These patients were misdiagnosed as having a conversion disorder, depression and CFS.

Medicine needs to admit to itself that classifying every unexplained problem as psychiatric was a terrible mistake.

 

[trishrhymes]

I can understand Jamieson's difficulty.

I think probably quite a lot of us have several ill understood conditions which might or might not have a single underlying cause.

For example I have ME, IBS and other gut problems, migraine, fibromyalgia, and possibly EDS and fairly mild POTS and maybe even MCAS or Lyme or cardiac problems etc.

I will probably never know about most of these, since I live in a country that can't handle me having even one multisystem illness, never mind a whole collection. Sadly in the UK I am a classic case of MUS as far as the NHS is concerned.

For me the conclusion I reach is that I have ME. That's the part that massively disables me.

 

[CedarHome]

RE: Illness identity
A year ago I would have sloughed off the idea of identifying as a CFS/ME patient. No way! I'm a- paused runner! A hiker who... can't hike at the moment. A dancer, a gardener who.... just so happens to spend all summer indoors on the couch.

After starting out looking for help here, then going in different directions as I get more test results back (Lyme! Mold! Mercury! Gut issues!), I have to say..... I find myself feeling perversely loyal to Team ME/CFS, or at least Team Phoenix Rising, because this is far and away the most helpful, easiest to navigate, best organized patient forum and kindest and most generous patient community I've come across. (Team Mercury seems pretty amazing too.)

As my real life relationships become harder to sustain, the online ones matter more. Having this community has been the most important part of my attempts at recovery so far.

Time to get the tshirt I guess!

 

[Woolie]

I'm also having to confront these same issues. I've recently been given a tentative, alternative diagnosis for my symptoms. If this diagnosis is confirmed then technically, I never had CFS.

I like it here, but will I be a fraud if I continue to come here as a non-CFS patient?

Also, whether I turn out to have this other diagnosis or not, the whole thing's got me thinking about how heterogeneous we all might be. I'm back to the idea that many pathways might lead to a similar configuration of symptoms.

 

[daisybell]

I'm also having to confront these same issues. I've recently been given a tentative, alternative diagnosis for my symptoms. If this diagnosis is confirmed then technically, I never had CFS.

I like it here, but will I be a fraud if I continue to come here as a non-CFS patient?

Also, whether I turn out to have this other diagnosis or not, the whole thing's got me thinking about how heterogeneous we all might be. I'm back to the idea that many pathways might lead to a similar configuration of symptoms.

No - I don't think you'll be a fraud if you still come here... I'm sure that there are many of us who actually have other diagnoses, but we haven't had enough investigation/medical interest and belief to actually find that out.

If you do get a firm diagnosis, and you're happy to share what that is, I think that is a useful thing to us all.

My father had a muscle biopsy a couple of months ago, and he's still waiting for the results. I've been reading some of the stuff about mitochondrial disease, and so I'm waiting with interest.... it's a stretch but not impossible that I might have a mito problem, if his results ever appear.......
And, according to Prof E, I have enough anti-nuclear antibodies for that to explain my fatigue at least... so who knows!

 

[Diwi9]

Good on, Jamison! I'm in the same predicament and he's bringing up great points. DX'd with Reynaud's, POTS, and Generalized Hypermobility...along with all sorts of immune deficiency stuff, and at least one Lyme co-factor...so what do I have? I'm being treated for POTS and MCAS. Whatever it is, treatment is helping. Why am I returning to remission, we are not all the same...? The diagnostic label is not a group, it's a way to castigate the unknown...when it's too much burden to try to figure it out for the individual. I feel loyalty to this community: Lyme, EDS, ME/CFS, POTS, Fibro, and Autoimmune. We are all in the same boat and I have a feeling that many of our symptoms will in time be tied to a common dysfunction/disease process.

 

[Woolie]

If you do get a firm diagnosis, and you're happy to share what that is, I think that is a useful thing to us all.

Yea, if its confirmed I will.

 

[lafarfelue]

Thanks for sharing this, @AndyPR. I feel relatively new to the 'diagnosed with xy+z chronic illnesses' caper, however this is something I've thought about a lot. (I mean, what else is there to think about, what with all the insomnia..?! )

Thanks to everyone for sharing how they feel, too. It's reassuring and validating knowing I'm not the only one who finds this aspect difficult.

The diagnostic label is not a group, it's a way to castigate the unknown...when it's too much burden to try to figure it out for the individual. [...] We are all in the same boat and I have a feeling that many of our symptoms will in time be tied to a common dysfunction/disease process.

This is how I'd LIKE to imagine I feel, however the doubt is forever creeping. Hearing these things from others really matters.

(ps. Best of luck @Woolie !)

(pps. AndyPR, before I forget.. your new profile pic is )

 

[trishrhymes]

I'm also having to confront these same issues. I've recently been given a tentative, alternative diagnosis for my symptoms. If this diagnosis is confirmed then technically, I never had CFS.

I like it here, but will I be a fraud if I continue to come here as a non-CFS patient?

Also, whether I turn out to have this other diagnosis or not, the whole thing's got me thinking about how heterogeneous we all might be. I'm back to the idea that many pathways might lead to a similar configuration of symptoms.

Whatever happens with your diagnosis, please don't go away from PR. I always value your knowledge and wise contributions.
I hope the diagnosis enables better treatment. It will be valuable to have your story told here. There are probably lots of us misdiagnosed who can learn from it.

 

[alex3619]

I take a more pragmatic and scientific approach. I have ME. That is not a statement of fact. Its a working hypothesis. Show me a better hypothesis and I will go that way instead. I like to think I would not ignore ME though, its right this is one of the most marginalized, trivialized and stigmatized diseases. That would still need addressing.

Like many of us I have a string of diagnoses that are objectively confirmed, and another long list that is always pending because doctors do not do the tests.

We need biomarkers. There is a lot of focus on that now. Its something I find fascinating. Its also important to recall that biomarkers are not all diagnostic. So what if an abnormality is not diagnostic of ME or CFS? It shows something is wrong. It can be used as a treatment marker.

 

[A.B.]

We need biomarkers. There is a lot of focus on that now. Its something I find fascinating. Its also important to recall that biomarkers are not all diagnostic. So what if an abnormality is not diagnostic of ME or CFS? It shows something is wrong. It can be used as a treatment marker.

A large biomarker and subtyping project, preferably an international collaboration, could be quite useful. It's a shame MEGA was led by the worst ME/CFS researchers on the planet.