Chronic Illness Fucks with Your Head

Something I haven't written about much yet in this blog are the challenges that are associated with living with chronic illnesses.  This is my first attempt to do so.  Please forgive any looseness in the thinking; it's my first attempt to articulate to others what these challenges are.

While mention of the daily challenges haven't appeared much in my writing here, these challenges are ever-present in my life.  Some of the challenges are straight-forwardly physical:  sleep repeatedly interrupted from pain, daily headaches, muscle spasms, loss of balance leading to falls down the stairs, and stiff, swollen joints.  In this post I want to focus on a few challenges of a different kind, challenges I call mind-fucks.  The straight-forwardly physical challenges suck, that's undeniable, but the mind-fucks suck in a much more complex and troubling way; personally, I find them more difficult to cope with than the physical challenges.

Living with these challenges, psychological and otherwise, can be very isolating and one way that I have dealt with this is by seeking out the accounts that others give of their experiences in books, blogs, and online bulletin boards.  While this sources have been helpful in dealing with the feeling of isolation in general, the mind-fucks are challenges that remain isolating--I have yet to find others writing about them.

Mindfuck #1:  Distrust of the self: This one is huge and could be broken down into multiple mind fucks.   It includes distrust of my general cognitive abilities, distrust of my emotions, distrust of my judgments about myself and the world.

Part of this distrust of self involves doubt about my own judgment of my capacities.  Some days, I'm filled with energy and the pain is just a background hum.  On these days, I try to do all those things I can't do on other days.  Inevitably I overdo it and must deal with the consequences:  I'm exhausted and my body hurts for the next several days.

Sometimes when I feel really horrible, I ask myself, "Can it really be this bad?" as if there's some objective standard against which I can determine how bad my pain actually is so that I can then know whether I'm feeling the right degree of bad.  But this is absurd; pain doesn't work this way.

This way of thinking is also exacerbated by isolation;  I know that when I'm in communication with others who also live with chronic pain, I have much less self-doubt about the nature and degree of my own pain.  While they don't provide an objective standard against which I can measure my own pain, they provide a kind of reality check that does confirm that yes, many autoimmune diseases do involve living from one day to the next with a great deal of pain, and the very chronicity of this pain can itself exacerbate the day-to-day experience of pain.  That is, it's exhausting to need to make near constant use of coping mechanisms to deal with pain.

When I'm doubt my judgment about the pain I'm experiencing, I wonder if others feel like this and they just don't say anything.  I tell myself that it can't be as bad as it seems, and I should just try harder and stop being such a lazy cry-baby.  There's a lot of self-hatred revealed in this kind of self-doubt, and it also reveals a complete loss of sense of what's normal.

Another mind-fuck related to self-doubt involves feelings of guilt and self-hatred associated with having hidden disabilities.  Others who appear much worse off than I do work full time and do many things I can't do.  People who use canes and wheelchairs, who are blind, have cancer,  are missing limbs--they get up and go to work.  If I can't that must mean that I'm being lazy, and I've just somehow fooled my doctors into thinking that I have chronic illnesses that make work very difficult or impossible.  The process of writing out these doubts and mind-fucks, at a time when I'm not caught up in directly experiencing them, reveals their absurdity to me.  But this absurdity is nowhere to be found when I'm caught up in the repetitive patterns of thinking.

Another kind of mind-fuck is one about the judgment of others:  It shouldn't be surprising, given the degree of self-doubt I've just described, that I often become caught up in worrying about whether others believe in my illness, and I become angry at any indication that someone might doubt me.  This worry isn't created out of thin air.  Historically, certain kinds of illnesses have been associated with women and dismissed as being the product of over-active female imagination.  Women are, by nature, hysterical.  The linguistic root of hysteria is uterus.

Interestingly, autoimmune diseases disproportionately affect women, for as yet unknown reasons.  Many of these diseases are difficult to diagnose; as yet, there are no specific tests that can be done that identify a particular autoimmune disease.  Rather, a diagnosis is reached after other possible diseases that can be tested for are excluded. For example, psoriatic arthritis. like rheumatoid arthritis, can be detected by markers of inflammation in the blood,  x-ray evidence of bone erosion and soft tissue swelling, and visible signs of joint redness and swelling.  Psoriatic arthritis is reached as as diagnosis when rheumatoid arthritis is excluded, as r.a. is associated with Rh factor in the blood and psoriatic arthritis is not.

The world is rife with stories of women who have been told by their primary care doctors, rheumatologists, and neurologists that their symptoms are 'all in their heads,' a consequence of overly stressful lives or childhood abuse, or merely a bid for attention.  While this diagnosis may be accurate in some cases and to some degree, many of these women are mentally healthy (apart from their distress at being demeaned by their doctors) and found by more discerning doctors to have specific autoimmune diseases such as lupus, multiple sclerosis, and   psoriatic arthritis.

I have two stories of my own I can share:  First, while growing up, I remember my father being scornful of a female relative who had multiple allergies:  I heard him repeatedly scoff and say that they were all in her head, and that she was just making them up to get attention.  Second, I once went to a very well recognized rheumatology and neurology center to get second opinions about my psoriatic arthritis, fibromyalgia, and demyelinating disease.  I was skeptical that I would have three separate diseases, and thought it worthwhile to investigate whether or not all my symtoms might be attributed to a single, more broadly systemic disease.

I was examined by a rookie rheumatologist in the presence of an experienced rheumatologist.  I should say that I was at that time taking very strong drugs that had reduced my symptoms of psoriasis and arthritis, and I told the doctor this.  I described to the examiner the symptoms I've had since I was a teenager (hot, swollen joints, especially in the fingers and toes, skin rashes, sore spots in specific areas throughout my body, and severe fatigue), the confirmation doctors have had through x-rays of my feet and hands, and the drugs I was taking as prescribed by my other rheumatologist.  The examiner looked me over, pronounced that he saw no current evidence of inflammation or rash, asked what I did for a living, and then said that many women, particularly professional women like myself, were under a lot of stress, and that was likely the  cause of my not feeling well.  The attending physician nodded his agreement.

I later saw a neurologist at the same center.  I came to the appointment with a list of the symptoms I had been experiencing.  Unfortunately, as I found out after asking him, my medical records had not yet been received by him, so he was not able to see for himself my multiple MRIs showing extensive demyelination in my brain.  I did tell him about the MRIs, though. He asked many, many questions, and then I left his office.  More than a month later, after I hadn't heard anything from him, I was able to obtain a copy of his report that had been sent to my regular neurologist.  I couldn't believe what I read; it was a collection of statements essentially saying that I had psychological problems and no demyelinating disease.  He used the fact that I came with a list of my symptoms as evidence of hypochondria.  He referred to the fact that I used a cane, even though I could walk unsupported during the short period of the exam, as evidence that I was exaggerating.  He referred to my mother's schizophrenia and depression as evidence that I likely had psychological problems myself.  He said that the fact that I had symptoms affecting multiple body symptoms could indicate that I had a systemic autoimmune disease such as post-Lyme syndrome or neuro-Behcet's.   More likely, however, I had some non-organic disorder (i.e., it was psychological disorder); this was further supported by the fact of my ongoing depression (I had mentioned that I had a period of depression in college, over twenty five years ago).  He went on to say that this non-organic etiology would be even more likely if I could also be found to have some symptoms affecting my reproductive system; perhaps my recent disinterest in sex (I had mentioned ongoing fatigue) could be considered such a symptom, he helpfully offered.  No evidence was given to support his diagnosis, and no explanation was offered for the lesions scattered throughout my brain.   In the years since, I've gone back to my old neurologist and rheumatologist, and learned to be content with the diagnoses of specific multiple auto-immune diseases, and the non-specific diagnosis of demyelinating disease of the central nervous system.  Even though these diagnosis don't tie everything together into one simple diagnostic package, they are consistent with the findings of repeated MRIs, x-rays, and blood tests.   And they're a hell of a lot better than being dismissed as a hysterical female who would get better if she reduced the stress of her professional life.

So, given these experiences that many women have had, yes, there's a bit of a mind-fuck that involves worrying whether others will take your seriously or if they'll just dismiss you as a hysterical, stressed-out female in need of the attention of a man.

Frankly, I'm tired of asshole doctors who, when faced with females who have the kinds of symptoms that accompany many auto-immune diseases, chalk the symptoms up to stress, depression, fallout from childhood sexual abuse, or good old-fashioned hysteria.  It's bad enough to live with the pain and symptoms of the diseases, and the self-doubts that come with chronic illness.  We don't need the burden of additional self-doubt that's contributed by sexist doctors who practice bad science.

Another mind-fuck (and this is a big one) is the fear of being a burden.  It's incredibly difficult to admit that you can't do everything you want to in the course of daily living, and that you used to be able to do.  It's frustrating and sometimes humiliating to need the help of others to carry out ordinary life-tasks like carrying groceries, driving.  It can destroy your image of yourself as a competent, worthwhile human being.  For long periods, I found it impossible to extinguish the sense of guilt that came with needing and asking for help.

I've found that it's helpful to remind myself that I don't mind doing things for others, and to project that perhaps they might be telling the truth when they say they don't mind helping me.   Personally, I know that the people who are the biggest pains in my ass who won't stop apologizing for asking something of me when doing the thing for them is not a big deal in the first place.  Yet even thinking about things from this perspective cannot entirely alleviate the desperate feeling of needing to apologize for asking for help, and the feelings of guilt for not being able to take care of yourself.

Another mind-fuck involves guilt about efforts to increase health and fitness.  If I can walk up a hill or a flight of stairs without pausing, rather than feeling like I've achieved something laudable, I feel guilty.  I worry, maybe people will judge me and think that I'm not truly disabled.  I doubt myself:  maybe I'm no longer disabled?  But the only reason I can become this fit, a fitness level that most people have by default, is that I have the time to take care of myself.  For example, after increasing the distance I can walk each day, I was able to walk more than two miles the other day.  But I had to stop every 75 feet or so, and I paid for it by being too sore to sit in the car on a trip to the grocery store, sleeping more than 12 hours that night, and needing a nap the next day.  So what's the solution?  Don't exercise and stay unfit and fit the stereotypical model of the disabled person?  Or exercise, become more fit relative to myself, yet risk being judged a faker, even as I experience additional fatigue and pain as fallout from the exercise.

Another mind-fuck:  Everyone feels entitled to comment about how your illnesses could be cured if only you would adopt the practices they advocate.  When you refuse, then they feel as if they can say that your continued illness is your own fault.  Here, even those with chronic illnesses are guilty.  They adopt some practice,  their symptoms improve, and they think they've discovered the cure for multiple sclerosis, lyme disease, fibromyalgia, etc.  But these diseases go through flairs and remissions, so there's no way to safely conclude that the practice was what led to the remission. They're guilty of two errors; they confuse correlation with causation, and they think that a single case can be generalized to prove something for larger populations.   Yet I want to be respectful, to listen to what each person has to say, to respect their experience, and to remain open to the possibility that there is some merit to their suggestion.

Finally, there are those people who engage in diatribes against medications, the health care system, and the pharmaceutical industry. They would never take these medications or have tests done on themselves.   They say things like, "those medications are the product of a conspiracy by the pharmaceutical industry to convince people that the pains of day-to-day human experiences and the consequences of our degenerate modern life are symptoms of individual physical sickness that must be treated with unnatural chemicals.  You should use only natural products and natural healing processes, or change your life so that it's more in line with the way humans used to live before modern civilization."

There are lots of problems here, although there are some kernels of truth as well.  Is there corruption?  Are some medications and medical services ridiculously over-priced, and do some people receive medical care that is unnecessary?  Undoubtedly.  Does modern civilization aggravate or create certain symptoms?  Yes.  Does this mean that there's nothing wrong with me medically, or that I should refuse medical treatment?  No.  Without those medications and tests, my life was and sometimes still is, hell.  The drugs open a space for me to take pleasure in the world around me, to enjoy the beauty of a sunset, to cook dinner, to and to dress myself.

And the naturalness of something doesn't guarantee its goodness.  [In my view, it's all natural, human-made or not, given that humans are part of nature.  But I get what they mean.]  Many natural products and processes are deadly--cancer is natural, so are typhoid, cholera, and death from septicemia from an ingrown toenail. Nor does the human-madeness of something guarantee its badness.   Think penicillin, modern sewage disposal systems, and soap.

But the problem remains: even though I reject the overall validity of their arguments, the mind-fuck remains:  There's a constant battle to reject the judgments of others, to avoid transferring those judgments into my own view of my self.

I know this post reads a bit like a rant.  I apologize for that, though I do think that writing this was of value:  it was both therapeutic for me and I think it will be educational for those who may not realize how they inadvertently make things more difficult for those with chronic illnesses.