It Shouldn’t Be Like This (But It Is)

Go with me on this…

Someone finds a funny lump on their testicle or breast so they call the GP to book an appointment and get it checked out. Once the GP has checked it out and is suspicious, the person is catapulted onto a cancer pathway that presumes it is cancer until proven otherwise.

This happened to me recently, and in the UK this is called an ‘urgent suspected cancer referral’ and, thankfully, 90% of people do not receive a cancer diagnosis. Panic, panic, panic, and breath, no cancerous mole for me.

What about the 10% that do get a positive diagnosis of cancer? If this frightening news was treated in the way that many MS diagnoses are then the following is a rough approximation of the next steps:

Try to imagine that this newly diagnosed testicular or breast cancer patient were dispatched from clinic by the oncologist, or possibly even the oncology nursing team, with a handful of leaflets about the available drugs (some of which, if we are frank,  are the modern equivalent of having surgery after a hanky with chloroform has been held to your face) and then offered an appointment in several months’ time to check how the tumour is growing and discuss options and choices.

So far, not wildly shy of the mark for many MS patients. By the way: the drugs? All of the drug options for MS sound horrendous to the uninitiated, and with no idea how to interpret the dreaded side-effects listed it is little wonder if you baulk. Grasping the leaflets about these Disease Modifying (not curing) Therapies the vast majority of patients realise that they have to learn a totally alien language at the same time as coming to terms with the diagnosis of chronic disabling disease. The faster the better. The newly diagnosed patient is on their own and with a complete freak-out diagnosis having been handed to them they do what everyone does these days and Google it despite being told to stay away from Google (for the record the most facile piece of ‘advice’ ever). 

Is it lacking context? Definitely.

Are you confused? You will be.

Are you scared? Guaranteed.

Of course, that doesn’t happen with cancer (except the Google bit!). No one would dream of treating a cancer patient like this. However, that is the exact experience of far too many newly diagnosed MS patients.

Compared to the relatively well-funded oncology services in the NHS the MS service is the poor relation and when the MS patient finally gets their confirmed diagnosis of an incurable, lifelong, and progressively disabling condition there is relatively little support. The nurses are amazing but they have a ridiculous patient load.

It’s odd though. For all the patient-centricity that is talked about you still hear about the occasional diagnosis by post, the gaslighting of patients who want to get on the most efficacious therapies the soonest (a proven beyond doubt way to mitigate the long-term effects of this ghastly disease), the patients who are told to choose their own medication (you are assumed to be an expert in pharmacology, pharmacodynamics, immunology, neurodegeneration etc) and to try and get the best outcomes the MS patient is going to have to become expert in the disease and the treatments, and if they have read much they’ll know that whilst things take the time they take their brain and nervous system is deteriorating at an unknown rate. With every day that passes they are a stage nearer to a host of repeatedly proven disabilities, both physical and mental. 

In case you are wondering, in the UK once cancer is confirmed there is a two-week target to start treatment. Two weeks from diagnosis. Two weeks! Not always hit I grant you but a stated ambition nonetheless.

“But (at least?) it isn’t cancer” or variations thereof are trotted out at this point as if comfort is to be taken from this spurious and slightly odd comparison. Odd,  because at least many cancers are curable whilst MS remains an incurable disease. The available drugs merely – to differing degrees – modify the disease course. There is no cure. MS is progressively robbing the patient of everything they took for granted, usually when they are in the prime of life.

The sad fact is that cancer is, rightly or wrongly, strongly associated with premature death, and in our society especially, we are very scared of death. A bit like Harry Potter’s  Voldemort it is customary to call it something other than what it really is. Death is powerful, frightening and to be avoided. We go so far as to publicly lionise people whom we feel have given their lives to preserve ours/others. It is called the ultimate sacrifice and valourised through the award of medals for bravery. Life is to be treasured and celebrated, the selfless giving of it for one’s fellow man doubly so.

You see, MS doesn’t kill you. You tend to die with MS and not from MS and this fact alone makes it infinitely less scary to an outsider, be that a friend or a neurologist. I can only imagine that this is the reason why MS is not taken as seriously as cancer.

Let’s return to death for a moment; the uncontested outcome, the undeniable and unavoidable endpoint for us all. I believe this is the real problem when holding the approach to MS care against that of cancer care. The focus is on the endpoint and isn’t really on the journey. MS patients are set for a long and difficult journey and yet that journey seems overlooked, devalued, unimportant when held against the fact that it is unlikely to lead to premature death. With MS the journey doesn’t seem to matter, only the denial of death. 

There has been no serious systemic change in MS care, as there was with cancer treatment. Perhaps it’s time we started that conversation? 

(Is the system perfect for cancer patients? Undoubtedly not. However, my point is that the professionals treating cancer or MS tend to have quite different feelings about the seriousness of the disease. This is a historical thing and the entire system surrounding the perception of the seriousness of MS is structurally flawed, or it would be taken more seriously, as a rule, not an exception.)

By: with the capable help of top-notch proofreaders Rachel and Kathleen

6 thoughts on “It Shouldn’t Be Like This (But It Is)

  1. Excellent post and agree the MS model needs more urgency and the cancer analogue is not unreasonable. I am in the US and what you’ve described is the same here as well.

    Multiple studies have shown that an MS diagnosis in itself can also lead to PTSD for up a year or two. So in addition to asking shellshocked newly diagnosed laypeople to make decisions they’re not informed enough to do, we’re asking them to make these decisions in the context of a cloudy emotional state. Ironically, rather than preventing PTSD and other results we are making outcomes worse by doing this. Definitely less than ideal.

    MS is a life altering and potentially severely disabling disease when undertreated. 100% agree there needs to be more urgency at diagnosis to treat aggressively and quickly, with an effort to improve the patient diagnostic experience in the pursuit of better long term outcomes.

  2. You may think, this guy hates doctors, you are not wrong, that should not preclude my treatment.
    Diagnosticians do not exist in pcp offices. I mean a broken bone doesn’t need to be diagnosed, just seen. Walking into a doctors office to say, my brain does not seem to be working and I’m so TIRED, is terrifying. All the staff sees is an able bodied whiner, WALKING in. I often thought, How am I not crawling?

    But, my PCP books a 15 minute slot so, how could he possibly figure this puzzle out? I was sure I was dying, how could he just send me home… to be like THIS! FOREVER?
    My symptoms, my research while out of my mind, took me to MS, quite frankly, it seemed an attractive option, My symptoms, 8 of 8. By attractive , I mean life expectancy is much better than some of it’s mimics and know this, I thought this was the end. My head is much worse from my view. My tongue had turned sharp, my patience had abandoned me and I was NOT being heard. 20 days into laying in bed, only getting up to puke, and I snapped. I wrote a scathing indictment of my PCP accusing him of sending me home to die. A challenge he denied but there was evidence. How could I have known you were ‘that sick’? he would ask me. HOW COULD YOU NOT?
    Now, a note of anger issues in my file and mental health starts asking how depressed I am 😡
    “Don’t bother trying to fix my mood if you are letting my brain rot.” I’m not trying to DIE! I am trying to get well !!!
    My visual symptoms, one eye staying dim in the morning was the red line, “Isn’t that interesting” He would say.
    I convinced him to order an MRI, head only,
    Nothing. I was truly being gas-lit at this point. Am I really sick? Here is the thing, nobody was looking at ME. Just looking at this one piece, today’s piece.
    I then went to hematology,
    HAHAHA! don’t be stupid, not cancer, GET OUT
    Now, a year and a half in, my ophthalmologist said, “not in here” of my brain, but instead of sending me home he listened. I had been watching MS videos and realized I was not starting my story over.The next doctor has no idea what is wrong. “My brain is not working right” was not triggering any tests or treatment plan but my condition left me unequipped to be more specific and my brain WAS failing.
    A professor of Neuroimmunology reviewed my case. 1st, lets get your brain working 50,000 u/week of vitamin D3 I was taking 2,000 U/day, Clearly not enough. Now that I’m thinking, I see some things.
    !. I am not ‘drug seeking
    2. I am NOT crazy
    3 not all neuropathy is related to my diabetes
    4 It’s ok for a doc to be unsure but not ok for him to stop looking

    some other tests… Monoclonal proteins … free light chains and…back to hematology… Myeloma? Amyloidosis? Before checking my oncologist decided to vent back on me. “Listen, I am sick of hearing I don’t care or I’m not doing enough to help” he started…
    I would finish…What the actual Fu@% You are YELLING at me because you failed to consider some thing, it makes my point, you were dismissive of me and did an incomplete examination because of it? I did not ask for more tests, I did not CHOOSE to BOTHER YOU Dr GEORGE!!!

    My inability to communicate symptoms was exacerbated by my PCP not reviewing my health records and only relying on the information I communicate at each visit. That failed me. I thought he at least knew my wrist xray stated “atherosclerosis” I tough he knew what all those high and low test meant in context of my symptoms but no, every visit is a new day to him.
    Left to my research the 1st thing I learned is a doctor has NO respect for ANYONE who would go online for medical diagnostics. I wasn’t checking FB though. I was watching top experts in the field. My symptoms are real, though undefined.
    I stopped working after my last trip to the ER. I cannot be sure, the stress of work wasn’t making it worse, I don’t know if I’m contagious and I don’t was to die working. The PTSD of diagnosis comes from the abuse we feel. I am dying inside and you smile and say, “I’ll see you in 60 days”
    2 more months! Like THIS! and then what? My finances have diminished and now, my fears have blossomed into full grown monsters, With the end of my insurance, ends all hope of treatment for a situation that is yet undefined.
    “It Shouldn’t Be Like This (But It Is)”

  3. Let me finish opening up this can of worms you seem to have started (inadvertently or otherwise)…

    There is one point in your essay which is not accurate, and I believe it is important to the issue being discussed, which is something like “How to improve reaction to a diagnosis”… “How to get a better patient response…” I’ll get to it after my intro.

    OK, I am challenged to respond, although my good sense tells me what I say seldom makes much of a difference and often gets me into creating my own distress of one form or another. Nevertheless, I continue. I’m new here and came via the MS Research Blog where your essay was also posted. I followed the links back here. I don’t like MS videos. Sorry Dominic. Fine line between knowledge and entertainment when info is put in a video, I believe. And I’m tired of seeing people with MS do things that seem miraculous, become “warriors”, etc. I’m waiting for an MSr to fly on one of those rockets to the edge of space and return and tell us all what a great experience it was because they have MS.

    I liked your essay because I like existential stuff. I was a licensed psychologist here in The US until MS made it too difficult for employers to hire me. So I went on disability. My education included a masters in Psychology at an existential – phenomenological program, then on to a very conservative-conventional PhD education at a major university, such that I could be licensed.

    So there’s the background and feeling behind what I say. We live in societies where the obvious is either strictly avoided or buried deep, and paid as little attention to as possible. I believe that MS knowledge is often treated in a similar manner, as it involves some of the same issues (that you mention). And there can be negative consequences to speaking the truth as well. Trust me, I know.

    You do a great job pointing out how MS, especially in the beginning years, begs our notions of survival, life and death. I like the idea of MS as a process disease. One point you make is not accurate however. You imply we all accept that death is inevitable. I totally disagree. The majority of people may say that all people on this earth today will die, but upon further clarification you would eventually get a different answer. Yes- we are very scared of death. But that quandary for most of us has already been resolved (long, long ago) and most people, if you were able to strap them in and force them to speak, would tell you that their “moments” will continue on, add infinitum. This is totally different than starting with a limited, finite number of “moments”, where the spending of each one is uniquely accounted for. The other method, who cares? The moments will never stop coming. Your indestructible physically unaccountable, miracle stuff “soul”, will continue onwards indefinitely, and while you are stuck in this moment, there is an ever present and watching presence of a non existent being who is managing all your difficult situations so they don’t get too difficult. It is all this “gobbledygook stuff” that gets totally rattled, shaken, turned up side down and tested, during a process of MS (or other) diagnosis, and for many, they are not going to change any of it. Period. So if information on a plan for survival comes along that does not fit this belief system, the new plan simply will not be accepted. There will be lots of excuses.

    So while I am not advocating for it (because it would never be done), the existentially oriented counselor might begin the conversation by saying something like, “How do you look at issues of life and death, including your own, because…”, and take it from there. Are they capable of making true changes or will ordinary supernatural belief systems get in the way? Keep in mind, that when the cure for MS is realized, and all you need to do is take a pill (which we all hope for), then everything I have written becomes unnecessary (in terms of MS, only).

    I do like an idea of changing the idea of MS to a process disease that needs to be taken seriously, with the payoff being impacting the longevity of your life. I think this is done by some, but there is so much baggage to the idea of MS. In my younger days, the first thing you had to do was separate the ideas of MS and MD (muscular dystrophy).

    • Dear Tom,

      I appreciate the effort you have made to comment. Thank you.

      “I don’t like MS videos. Sorry Dominic.” Not all videos are created equal so assuming you have watched them and they aren’t for you then there is nothing to be sorry about. I am not at all put out.

      “You imply we all accept that death is inevitable.” – I agree. I am being a bit fast and loose for effect, not applying academic rigour to a polemic like this.

      Given your background, you may enjoy “Denial Of Death – Ernest Becker” as it was a formative book when I studied the cultic dimension of lone-actor terrorist radicalisation for my final year of undergraduate studies.

      “And I’m tired of seeing people with MS do things that seem miraculous, become “warriors”, etc. I’m waiting for an MSr to fly on one of those rockets to the edge of space and return and tell us all what a great experience it was because they have MS.” I couldn’t agree more. On the ‘Warrior’ point I find that hard to square. I am inherently lazy at heart and being a warrior implies a lot of fighting and that in turn sounds like awfully hard work. Given that it is an unwinnable fight – especially with the inevitability of death howsoever arrived at – thrown in there.



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