The Infectious Disease Society of America (IDSA), the American Lyme Disease Foundation (ALDF), the National Institute of Allergy and Infectious Diseases (NIAID), and the Centers for Disease Control and Prevention (CDC) are largely in agreement concerning Lyme disease. The collective opinion: In its later stages, Lyme disease is easy to detect with laboratory tests and simple to treat with a 28-day course of antibiotics. [Update 05/25/2011: The CDC once went a bit further and said that some patients may benefit from a second course of antibiotics; that was the information originally given here when this blog entry was first posted. However, the web address and wording of the CDC's Lyme treatment information has changed since the time of my original writing.]
The IDSA says that Lyme disease that manifests without erythema migrans [the characteristic bull's-eye rash associated with Lyme] "is diagnosed based on the patient’s history and the doctor’s examination of the patient in conjunction with a positive laboratory test result." The CDC endorses the IDSA Lyme disease treatment guidelines, but breaks with the IDSA enough to say [Update 05/25/2011: Again, the following wording is no longer on the CDC site.] that "Lyme disease is diagnosed based on symptoms, objective physical findings (such as [my emphasis] erythema migrans, facial palsy, or arthritis [again, my emphasis]), and a history of possible exposure to infected ticks," and that its [Update 05/25/2011: And yet again, the following wording is no longer on the CDC site. In fact, all of the CDC's information about Lyme disease seems to have been rewritten since this blog was first posted. The new home page of its Lyme information is here. On that page, you'll see links to the new topic pages.] "surveillance case definition" of Lyme disease "was developed for national reporting of Lyme disease" and "is not intended to be used in clinical diagnosis."
The Columbia University Medical Center Lyme and Tick-Borne Diseases Research Center goes much further than either group and says that "the CDC criteria are not very helpful for helping the clinician to detect late stage neurologic Lyme Disease."
Many insurance companies follow the IDSA treatment guidelines and will not pay for further testing if an initial Lyme laboratory test is negative. More important, they will not pay for long-term antibiotic treatment.
Some physicians' groups, most notably the International Lyme and Associated Diseases Society (ILADS), the Lyme Disease Association (LDA), and the Lyme Disease Foundation (LDF; created before the similar-sounding ALDF), adamantly disagree with the idea that laboratory testing is reliable and with the IDSA treatment guidelines. They maintain that current testing is extremely unreliable and far too restrictive, that longer courses of antibiotic treatment are often needed to combat Lyme, and that the research backing up both of these claims is routinely ignored by the IDSA.
Many patients continue to have symptoms, or have their symptoms return, after suspending even long-term antibiotic treatment. Those doctors and organizations who say a course or two of antibiotic treatment is sufficient say this could be the result of an autoimmune disorder caused by Lyme, an unrelated disorder entirely, or a reinfection of Lyme from another tick bite.
The attorney general of Connecticut, Richard Blumenthal, even opened an antitrust investigation into the IDSA, alleging that the board members who created the Lyme treatment guidelines had various conflicts of interest. In 2008, the IDSA agreed to purge the board of those members with possible conflicts of interests and to review its guidelines. It did hold a hearing on the matter earlier this year, and it says it "hopes to issue its final report by the end of the year." Links to testimony both supporting the IDSA guidelines and urging revision can be found on the IDSA website.
Barbara Johnson of the CDC, in her "Statement in Support of the Laboratory Testing Recommendations in the 2006 IDSA Clinical Practice Guidelines for Lyme Disease," said, "Serologic testing recommended by CDC since 1995 [2, 4] and endorsed by IDSA utilizes a two-tiered procedure that includes an initial ELISA and conditional immunoblotting to be performed if the ELISA result is positive or indeterminate." However, Barbara Johnson also holds patents for more than one Lyme-testing aid.
Should our government researchers be allowed to collaborate with big pharmaceutical companies for profit? It doesn't guarantee unethical behavior, of course, but it certainly could make engaging in it more tempting.
I am not a scientist and cannot possibly know what the absolutes of Lyme disease testing and treatment are, but I don't think we can discard the stories of thousands of Lyme patients who say they were helped by antibiotics only to relapse after their treatments ended. The IDSA would write many of these experiences off as the placebo effect:
Long-term therapy for so-called chronic Lyme disease can involve weeks, months and even years of intravenous antibiotics. Although some people may feel better, it doesn’t prove that the antibiotic cured or suppressed infection. Sometimes, the belief that a treatment is helping can be enough to make people feel better. This is called the placebo effect and it is a well-documented medical phenomenon. Antibiotics also have anti-inflammatory effects that may help alleviate certain symptoms. Or, in some cases, patients may have another infectious disease that is responsive to antibiotics.
It isn't uncommon for Lyme patients to go years before being diagnosed. During those years, they are often treated as though they are hypochondriacs. Is it really acceptable for the medical profession to again slap some of them with labels of "unbalanced" if they assert that their symptoms return when their antibiotic treatments end?
Spend any time trolling Lyme disease forums, however, and you'll soon see that patients themselves are sometimes hurting their own case. Many follow and actively promote unscientific and even unhealthy alternative therapies.
It's also clear that there are doctors out there who are quite willing to take advantage of desperate patients. Many doctors who advocate long-term antibiotic treatment for Lyme no longer deal with insurance, and most doctors who advocate long-term antibiotic treatment prefer to keep a low profile lest they be harassed by others in the medical community and overwhelmed by new patients. These are known as "Lyme-literate medical doctors," and most seem to truly care about patient health. However, there are those who seem only too happy to make huge profits from people who never show even initial signs of improvement from antibiotic therapy. LymeNet is full of posters with such stories to tell, posters who, disturbingly, are so relieved to have someone validate their experiences that they don't question their treatment protocols.*
My plan? I'm going to ask to be tested for Lyme again using a more sensitive test; I'll also ask my doctor to consider a strictly clinical diagnosis if my tests are again negative. (The symptoms of chronic fatigue syndrome and Lyme disease are identical. One has a treatement regimen and the other doesn't; the choice is really a no-brainer.) I'll also ask to be tested for tick-borne co-infections.
If my doctor is open minded and willing to allow me to try a treatment regimen, I'll try the 28 days of antibiotics. If I feel well after the course of treatment and continue to feel well, great. If my symptoms come back, I will ask my doctor to prescribe further antibiotics off label. If he refuses, I'll find a new doctor. It's really that simple. If something helps, I should have access to it. [Update: My doctor was perfectly willing to order more-specific Lyme tests and did so. Unfortunately, even though I am willing to pay out of pocket for the testing, the laboratory his office uses flatly refuses to run them unless the less-accurate enzyme-linked immunosorbent assay (ELISA) screening test is positive.]
*Although I have tried to offer reliable examples throughout this posting, it is impossible to do so when discussing Lyme-literate physicians and their methods and motives, because the Lyme community is fiercely protective of its doctors. There are only two ways to get the names of Lyme-literate doctors: 1) through a body such as the LDA or the LDF, and 2) through a patient group. In both situations, physician names are communicated directly to seekers and are not made available publicly. The only real way to get a sense of what is happening is to spend a great deal of time reading forum postings.
Sunday, November 22, 2009
Some Interesting Links
Lyme:
An article in the Journal of Clinical Microbiology detailing how inadequate Lyme disease testing is.
A webpage from the Columbia University Medical Center Lyme and Tick-Borne Diseases Research Center site summarizing research that demonstrated the persistence of infectious Borrelia burgdorferi [the spirochete that causes Lyme disease] in mice after they had been treated with antibiotics for one month. The studies summarized also indicated it was possible for dormant infection to become reactivated.
The Columbia University Medical Center Lyme and Tick-Borne Diseases Research Center website as a whole is really informative. The center is a joint project of Columbia University; Time for Lyme, Inc.; and the LDA. The center clearly recognizes that chronic Lyme exists and that Lyme testing is far from perfect. Its FAQ is really educational, acknowledging and explaining the realities of Lyme in a completely nonsensationalistic manner.
The trailer for the documentary Under Our Skin, a look at the politicization of chronic Lyme disease. I have not yet seen this, but from reviews I've read and online discussion I've seen, it is evident that there is a clear bias toward ILADS. Most people with Lyme talking about the movie online seem to see this as justified, though others point out that a more even-handed approach would do more to open minds and educate in the long run, and that there is room for compromise between IDSA and ILADS. I have read complaints that one particular Lyme expert in the movie is known in the Lyme community as something of a charlatan and was not the best choice of doctor representative.
Author Amy Tan discussing her chronic Lyme. This is the video of a Tribeca Talks Panel held after the screening of Under Our Skin at the Tribeca Film Festival. It's 40 minutes and 20 seconds long, but has a lot of interesting information. Tan really gets into how the disease affected her and how it still affects her at around 17:08.
An article by actor* Joanna Kerns discussing her daughter's chronic Lyme disease and promoting Under Our Skin.
Multiple Sclerosis:
MyMSMyWAY, a site that offers free games to improve cognitive function.
Fit Brains, another site that does the same.
*My use of the word actor instead of actress is not a reflection of my cognitive difficulties. Journalistically, the old masculine term is the new gender-neutral term.
An article in the Journal of Clinical Microbiology detailing how inadequate Lyme disease testing is.
A webpage from the Columbia University Medical Center Lyme and Tick-Borne Diseases Research Center site summarizing research that demonstrated the persistence of infectious Borrelia burgdorferi [the spirochete that causes Lyme disease] in mice after they had been treated with antibiotics for one month. The studies summarized also indicated it was possible for dormant infection to become reactivated.
The Columbia University Medical Center Lyme and Tick-Borne Diseases Research Center website as a whole is really informative. The center is a joint project of Columbia University; Time for Lyme, Inc.; and the LDA. The center clearly recognizes that chronic Lyme exists and that Lyme testing is far from perfect. Its FAQ is really educational, acknowledging and explaining the realities of Lyme in a completely nonsensationalistic manner.
The trailer for the documentary Under Our Skin, a look at the politicization of chronic Lyme disease. I have not yet seen this, but from reviews I've read and online discussion I've seen, it is evident that there is a clear bias toward ILADS. Most people with Lyme talking about the movie online seem to see this as justified, though others point out that a more even-handed approach would do more to open minds and educate in the long run, and that there is room for compromise between IDSA and ILADS. I have read complaints that one particular Lyme expert in the movie is known in the Lyme community as something of a charlatan and was not the best choice of doctor representative.
Author Amy Tan discussing her chronic Lyme. This is the video of a Tribeca Talks Panel held after the screening of Under Our Skin at the Tribeca Film Festival. It's 40 minutes and 20 seconds long, but has a lot of interesting information. Tan really gets into how the disease affected her and how it still affects her at around 17:08.
An article by actor* Joanna Kerns discussing her daughter's chronic Lyme disease and promoting Under Our Skin.
Multiple Sclerosis:
MyMSMyWAY, a site that offers free games to improve cognitive function.
Fit Brains, another site that does the same.
*My use of the word actor instead of actress is not a reflection of my cognitive difficulties. Journalistically, the old masculine term is the new gender-neutral term.
Timeline of Symptoms, Possibly Relevant Information, and New Doctor Update
The following is a timeline of the symptoms I've been dealing with for the past 11 years, as well as information I think may be relevant to diagnosing this illness. I'm giving this to my doctor; it is complete, but since this blog is a record open to my family and friends, I have deleted some of the more personal symptoms. If you think my story might be helpful to someone going through a similar ordeal, however, I will happily be forthcoming through email.
1. I have had all of these symptoms for years:
fatigue (about 11 years; constant, but worse some times than others; after any expenditure of energy, it is much more severe for an inordinately long time.)
muscle pain and stiffness and knots that never go away (about 11 years; extreme and getting worse; constant, but worse some times than others)
joint pain (worsening over the past 5 years or so; neck [always], fingers [often], hips [always], toes [often])
TMJ (6 or 7 years)
excruciating shooting pain from lower tooth; nothing shows on dental x-ray (3 or 4 years)
night sweats (about 3 years)
deleted
odd feeling shooting down arms (intermittent over the past 11 years or so, initially off and on for a few weeks or months, now happens frequently; numb but painful and weakens my grip)
forgetfulness (6 years or so; I will forget everyday words and tasks, like what the remote control is called or what to do after I've put the car in park [turn off the key].)
trouble concentrating and comprehending (3 years or so; I have to read and reread articles and work of the type I used to understand immediately.)
muscle cramps (3 years; legs, toes, and ribcage; at one time, I had low potassium, but it’s fine now and I still get the cramps.)
clumsiness (3 years; I have always been clumsy, but for the past few years I have definitely walked into objects and door frames more. It's as though I misjudge the clearance I need. I also drop more and have trouble typing that I did not have before.)
more frequent urge to urinate (2 or 3 years; deleted)
trouble sleeping (as long as I can remember; insomnia and less restful sleep at night than I can get if I sleep in the daytime)
dizziness and racing heart when taking hot baths (3 or 4 years; largely alleviated since my vitamin D level has come up)
random shooting pain in odd spots in my body (2 or 3 years; intense and short lived)
bone pain (2 or 3 years; began as sharp temporary pain but now includes aching)
2. The following are more recent:
vertigo (one severe bout a year ago; it lasted for three days and sometimes made it impossible to stand or walk. It caused nausea and vomiting.)
hot flashes (frequent only in the past year)
deleted
deleted
peripheral vision problems (past year or so; I will think I see a flying insect, mouse, or shadow at the edge of my field of vision, only to turn and realize nothing is there.)
shortness of breath (past year or so; sometimes after exertion, but sometimes not; I sometimes feel as though I'm breathing in enough air but am not getting enough oxygen)
burning in thighs with any kind of exertion such as climbing stairs (past year or so)
alcohol intolerance (past year)
muscle twitching (past few months; mostly at night and in the muscle groups that cause me pain)
using the wrong words (past few months; I will say “expensive” when I mean “rich,” or “cut” when I mean “tear.”)
more sensitive to sunlight and loud noises (past year)
3. deleted, involving acne and other hormonal issues
4. Within several months of the onset of my symptoms, I had an extremely itchy, non-contagious body rash.
5. I’ve had several blood tests and a brain MRI and all tests have been normal. I have no tender points.
6. Earlier this year (2009), a blood test showed that I had low vitamin D. I have since gotten my vitamin D level up, but my symptoms remain.
7. I did see a neurologist this year; he looked at my MRI and told me it was not possible for me to have MS. I asked about the MS Society’s assertion that 5% of MS patients have negative brain MRIs and was told, “The MS Society lies.” I asked about the possibility of spinal lesions and was told that spinal lesions would only be a possibility with a symptom like vertigo. I responded, “It’s on the list of symptoms I just handed you,” and the neurologist simply repeated that I could not possibly have MS.
The neurologist also told me that the neurological exam he was giving me was standard and complete, but I am certain that it was neither. It lasted less than 10 minutes and did not include any balance test that required me to close my eyes.
8. I saw a rheumatologist after I saw the neurologist. He told me that I could not have chronic fatigue syndrome unless I had endured a serious trauma (his example: being raped as a child). He asked if I had several symptoms, among them bruising and fluid retention. I answered yes to those two particular symptoms and also told him that all my symptoms are worse when I am ovulating or menstruating. He went on to tell me I had no symptoms related to lupus.
The rheumatologist went on to tell me that he believed my problem was in my central nervous system; however, the letter from his office that ended up in my medical file speculated that perhaps I have chronic fatigue syndrome or fibromyalgia. I believe the letter was probably sent by the nurse practitioner I saw the first time I visited the office; my full consultation with the rheumatologist was a follow-up appointment made after I completed my prescription for vitamin D.
9. No one has suggested further testing, but they have been willing to prescribe muscle relaxers and antidepressants. This is unacceptable to me. Muscle relaxers do not relax the muscles that are tense, but they do increase my fatigue exponentially. The only depression I have is related to having chronic pain, cognitive difficulty, decreased quality of life, and little hope of change. In short, any depression I deal with is the result of this illness, not the cause of it.
A small percentage of patients with rheumatoid arthritis, lupus, multiple sclerosis, and Lyme disease all consistently test serologically negative, but no one has yet seemed willing to consider the possibility that I might be one of these patients. Unlikely or not, I have a real, physical illness. I need to know what it is so that I can begin a course of useful treatment.
I have read that false negatives are more common in Lyme disease tests than they are in autoimmune tests. Before my symptoms made it impossible, I was a very active person who spent a lot of time in the woods. Because of the higher false negative rate of the Lyme tests and because of my history of possible exposure, I very much want to have a C6 Lyme Peptide ELISA (C6LPE), a Western Blot from a laboratory that tests all bands, and a Polymerase Chain Reaction (PCR) test.
Because of my cognitive difficulties, nerve pain, vertigo, and balance issues, and because I have an aunt with multiple sclerosis, I would also like further evaluation for multiple sclerosis, including a spinal MRI, lumbar puncture, and full neurological exam.
UPDATE: My new doctor was better than any I've ever seen (his nurse, however, was ignorant and dismissive - told me I couldn't be in as much pain as I said I was because I didn't look as though I was). The doctor listened, took me seriously, and was happy to order the Lyme tests I wanted (though he is holding off on the others until the bloodwork comes back). However, what my doctor ordered does not matter to the laboratory. The lab does not offer the C6 ELISA, only the standard ELISA. And though my doctor specified he wanted the Western Blot regardless of ELISA results, the lab refuses to do either the Western Blot (its version of which does not include all bands) or the PCR test without a positive ELISA. I offered to pay out of pocket for these tests and was flatly told the laboratory would not run them under any circumstances without a positive ELISA. (The entry entitled "The Lyme Controversy" explains why this refusal to test is so egregious.)
1. I have had all of these symptoms for years:
fatigue (about 11 years; constant, but worse some times than others; after any expenditure of energy, it is much more severe for an inordinately long time.)
muscle pain and stiffness and knots that never go away (about 11 years; extreme and getting worse; constant, but worse some times than others)
joint pain (worsening over the past 5 years or so; neck [always], fingers [often], hips [always], toes [often])
TMJ (6 or 7 years)
excruciating shooting pain from lower tooth; nothing shows on dental x-ray (3 or 4 years)
night sweats (about 3 years)
deleted
odd feeling shooting down arms (intermittent over the past 11 years or so, initially off and on for a few weeks or months, now happens frequently; numb but painful and weakens my grip)
forgetfulness (6 years or so; I will forget everyday words and tasks, like what the remote control is called or what to do after I've put the car in park [turn off the key].)
trouble concentrating and comprehending (3 years or so; I have to read and reread articles and work of the type I used to understand immediately.)
muscle cramps (3 years; legs, toes, and ribcage; at one time, I had low potassium, but it’s fine now and I still get the cramps.)
clumsiness (3 years; I have always been clumsy, but for the past few years I have definitely walked into objects and door frames more. It's as though I misjudge the clearance I need. I also drop more and have trouble typing that I did not have before.)
more frequent urge to urinate (2 or 3 years; deleted)
trouble sleeping (as long as I can remember; insomnia and less restful sleep at night than I can get if I sleep in the daytime)
dizziness and racing heart when taking hot baths (3 or 4 years; largely alleviated since my vitamin D level has come up)
random shooting pain in odd spots in my body (2 or 3 years; intense and short lived)
bone pain (2 or 3 years; began as sharp temporary pain but now includes aching)
2. The following are more recent:
vertigo (one severe bout a year ago; it lasted for three days and sometimes made it impossible to stand or walk. It caused nausea and vomiting.)
hot flashes (frequent only in the past year)
deleted
deleted
peripheral vision problems (past year or so; I will think I see a flying insect, mouse, or shadow at the edge of my field of vision, only to turn and realize nothing is there.)
shortness of breath (past year or so; sometimes after exertion, but sometimes not; I sometimes feel as though I'm breathing in enough air but am not getting enough oxygen)
burning in thighs with any kind of exertion such as climbing stairs (past year or so)
alcohol intolerance (past year)
muscle twitching (past few months; mostly at night and in the muscle groups that cause me pain)
using the wrong words (past few months; I will say “expensive” when I mean “rich,” or “cut” when I mean “tear.”)
more sensitive to sunlight and loud noises (past year)
3. deleted, involving acne and other hormonal issues
4. Within several months of the onset of my symptoms, I had an extremely itchy, non-contagious body rash.
5. I’ve had several blood tests and a brain MRI and all tests have been normal. I have no tender points.
6. Earlier this year (2009), a blood test showed that I had low vitamin D. I have since gotten my vitamin D level up, but my symptoms remain.
7. I did see a neurologist this year; he looked at my MRI and told me it was not possible for me to have MS. I asked about the MS Society’s assertion that 5% of MS patients have negative brain MRIs and was told, “The MS Society lies.” I asked about the possibility of spinal lesions and was told that spinal lesions would only be a possibility with a symptom like vertigo. I responded, “It’s on the list of symptoms I just handed you,” and the neurologist simply repeated that I could not possibly have MS.
The neurologist also told me that the neurological exam he was giving me was standard and complete, but I am certain that it was neither. It lasted less than 10 minutes and did not include any balance test that required me to close my eyes.
8. I saw a rheumatologist after I saw the neurologist. He told me that I could not have chronic fatigue syndrome unless I had endured a serious trauma (his example: being raped as a child). He asked if I had several symptoms, among them bruising and fluid retention. I answered yes to those two particular symptoms and also told him that all my symptoms are worse when I am ovulating or menstruating. He went on to tell me I had no symptoms related to lupus.
The rheumatologist went on to tell me that he believed my problem was in my central nervous system; however, the letter from his office that ended up in my medical file speculated that perhaps I have chronic fatigue syndrome or fibromyalgia. I believe the letter was probably sent by the nurse practitioner I saw the first time I visited the office; my full consultation with the rheumatologist was a follow-up appointment made after I completed my prescription for vitamin D.
9. No one has suggested further testing, but they have been willing to prescribe muscle relaxers and antidepressants. This is unacceptable to me. Muscle relaxers do not relax the muscles that are tense, but they do increase my fatigue exponentially. The only depression I have is related to having chronic pain, cognitive difficulty, decreased quality of life, and little hope of change. In short, any depression I deal with is the result of this illness, not the cause of it.
A small percentage of patients with rheumatoid arthritis, lupus, multiple sclerosis, and Lyme disease all consistently test serologically negative, but no one has yet seemed willing to consider the possibility that I might be one of these patients. Unlikely or not, I have a real, physical illness. I need to know what it is so that I can begin a course of useful treatment.
I have read that false negatives are more common in Lyme disease tests than they are in autoimmune tests. Before my symptoms made it impossible, I was a very active person who spent a lot of time in the woods. Because of the higher false negative rate of the Lyme tests and because of my history of possible exposure, I very much want to have a C6 Lyme Peptide ELISA (C6LPE), a Western Blot from a laboratory that tests all bands, and a Polymerase Chain Reaction (PCR) test.
Because of my cognitive difficulties, nerve pain, vertigo, and balance issues, and because I have an aunt with multiple sclerosis, I would also like further evaluation for multiple sclerosis, including a spinal MRI, lumbar puncture, and full neurological exam.
UPDATE: My new doctor was better than any I've ever seen (his nurse, however, was ignorant and dismissive - told me I couldn't be in as much pain as I said I was because I didn't look as though I was). The doctor listened, took me seriously, and was happy to order the Lyme tests I wanted (though he is holding off on the others until the bloodwork comes back). However, what my doctor ordered does not matter to the laboratory. The lab does not offer the C6 ELISA, only the standard ELISA. And though my doctor specified he wanted the Western Blot regardless of ELISA results, the lab refuses to do either the Western Blot (its version of which does not include all bands) or the PCR test without a positive ELISA. I offered to pay out of pocket for these tests and was flatly told the laboratory would not run them under any circumstances without a positive ELISA. (The entry entitled "The Lyme Controversy" explains why this refusal to test is so egregious.)
The Non-Physical Toll of Invisible Illness
One of the issues relating to this illness that has been, and continues to be, among the hardest to deal with is the feeling of isolation that comes with it. I can get angry when doctors don't listen or try to understand, but I'm much more likely to feel both angry and hurt when family and friends are dismissive.
If I try to describe what I'm going through in a matter-of-fact way, people simply don't understand. Pain? Oh, that must mean the aches and pains they've started getting now that they're a little older. Fatigue? Well, everyone gets tired; exhausted, sometimes.
Trying to make someone understand what I'm going through is almost sure to backfire. I'm still, in his or her mind, that person with common uncomfortable ailments, but now I'm also an attention-seeking whiner. This misunderstanding isn't entirely the listener's fault; people generally have to have some kind of frame of reference for something in order to understand it. A person's understanding of muscle pain and exhaustion is limited to the pain and exhaustion he or she has experienced. What most people forget to consider, however, is that people with autoimmune or neurological disorders have likely experienced the pains and the exhaustion that are sometimes part of daily living as well - so they have a very good frame of reference for what is normal and what is not.
The truth is, I'm neither a person with the typical aches and pains of aging nor someone looking for pity. I'm merely attempting to explain what is happening to me and defend myself against the uncharitable judgments others might make when I cannot do the things a person who is as healthy as I look to be can do. I want people to understand that when I cut back on my hours at work, it isn't because I'm not a hard worker. I want them to know that when I can't go shopping with them, it isn't because I don't care about spending time with them. I want them to know that if I overexert myself for a short time, I will be largely incapacitated for a long time.
Most people can work for eight hours and come home tired but functional. I can work for four hours, and I struggle to climb the stairs to my door. There have been a couple of times, when no one was around to see, that I allowed myself to crawl up the steps instead of walk. My staircase only has 13 steps.
My collection of symptoms isn't something I can push through, and that's not because I'm weak or lazy or undisciplined. I have an extremely high tolerance for pain and for most of my life was incredibly strong. I have pushed for years, probably longer and harder than most people could. I am no longer stronger than the force that is pushing against me, and all the effort and patience in the world are not going to change that. And though I can no longer push through this, I still push back with everything I have.
Once, after going through a round of blood tests, I said to a friend that I would rather have one particular condition more than another condition, since the latter condition was known to be disfiguring. My friend then proceeded to berate me for "wanting" to have the former condition. I didn't want to be exhausted and in pain, and I didn't want to be confused. I was those things, however, and figured I'd just as soon not look bent and broken on top of it all. The unspoken implication from my friend, however, was that I was seeking attention.
No one should have to deal with that kind of insulting implication from loved ones; unfortunately, most people with invisible illnesses do. (And for the record, I do sometimes seek attention. When I'm up to it, I do this by socializing and submitting my writing to literary journals. At one time, I engaged in both of these activities regularly and was also heavily involved in community theatre. There is no way I would have ever willingly traded a life that allowed me to participate in activities I loved for one that didn't.)
I've had family members tell me that what I feel "isn't that bad." How am I supposed to respond to that? What I feel in every moment is very much that bad and worse; if that isn't evident, it's because I'm exercising a great deal of the discipline people are far too likely to assume I don't have.
I don't feel bad because I am stressed, though I am sometimes stressed because I feel bad. I can be passionate and quick to react emotionally to things, true enough - but stress usually manifests itself physically when people are unable to express their emotions otherwise, not when they are more than adept at doing so. Beyond this, common sense alone should make short shrift of the stress theory. Every stressful element in my life absolutely pales in comparison to stressful elements in my past. Traffic stinks? Check! It's really bad when you don't have a car and must weave your way through traffic while carrying your laundry baskets. Money is tight? Check! Former single mom - need I say more? So I get a little peeved when I hear people suggest that I sometimes list into walls because I'm stressed.
Similarly, depression is also out as the cause of this disorder. I'm happier than I have been in years. It's true, though, that my quality of life has been drastically slashed, and I do find that depressing. I often feel guilty for not doing more at both the office and at home, and for the unfair burdens my inability to do more has placed on those I love; this guilt does sometimes lead to bouts of depression. I've generally become depressed each time I've seen yet another doctor who has been lazy, disinterested, condescending, or some combination of these. But my depression in all of these instances is situational and reactive, not causative. And so far, I've been able to compartmentalize it fairly well. That is, I still find great joy in my family and home, and I'm still capable of gratitude for the many blessings in my life. My family and I laugh together hundreds of times daily. Whatever is responsible for this illness, it isn't depression.
As I said earlier, explaining this ordeal almost always backfires. So why do I try again now? Because if I don't do what I can to educate, I don't have much room for complaining if misunderstandings persist. Just as I've had to become an advocate for my health, I now have to become an advocate for a greater understanding of the effects of invisible illness.
If I try to describe what I'm going through in a matter-of-fact way, people simply don't understand. Pain? Oh, that must mean the aches and pains they've started getting now that they're a little older. Fatigue? Well, everyone gets tired; exhausted, sometimes.
Trying to make someone understand what I'm going through is almost sure to backfire. I'm still, in his or her mind, that person with common uncomfortable ailments, but now I'm also an attention-seeking whiner. This misunderstanding isn't entirely the listener's fault; people generally have to have some kind of frame of reference for something in order to understand it. A person's understanding of muscle pain and exhaustion is limited to the pain and exhaustion he or she has experienced. What most people forget to consider, however, is that people with autoimmune or neurological disorders have likely experienced the pains and the exhaustion that are sometimes part of daily living as well - so they have a very good frame of reference for what is normal and what is not.
The truth is, I'm neither a person with the typical aches and pains of aging nor someone looking for pity. I'm merely attempting to explain what is happening to me and defend myself against the uncharitable judgments others might make when I cannot do the things a person who is as healthy as I look to be can do. I want people to understand that when I cut back on my hours at work, it isn't because I'm not a hard worker. I want them to know that when I can't go shopping with them, it isn't because I don't care about spending time with them. I want them to know that if I overexert myself for a short time, I will be largely incapacitated for a long time.
Most people can work for eight hours and come home tired but functional. I can work for four hours, and I struggle to climb the stairs to my door. There have been a couple of times, when no one was around to see, that I allowed myself to crawl up the steps instead of walk. My staircase only has 13 steps.
My collection of symptoms isn't something I can push through, and that's not because I'm weak or lazy or undisciplined. I have an extremely high tolerance for pain and for most of my life was incredibly strong. I have pushed for years, probably longer and harder than most people could. I am no longer stronger than the force that is pushing against me, and all the effort and patience in the world are not going to change that. And though I can no longer push through this, I still push back with everything I have.
Once, after going through a round of blood tests, I said to a friend that I would rather have one particular condition more than another condition, since the latter condition was known to be disfiguring. My friend then proceeded to berate me for "wanting" to have the former condition. I didn't want to be exhausted and in pain, and I didn't want to be confused. I was those things, however, and figured I'd just as soon not look bent and broken on top of it all. The unspoken implication from my friend, however, was that I was seeking attention.
No one should have to deal with that kind of insulting implication from loved ones; unfortunately, most people with invisible illnesses do. (And for the record, I do sometimes seek attention. When I'm up to it, I do this by socializing and submitting my writing to literary journals. At one time, I engaged in both of these activities regularly and was also heavily involved in community theatre. There is no way I would have ever willingly traded a life that allowed me to participate in activities I loved for one that didn't.)
I've had family members tell me that what I feel "isn't that bad." How am I supposed to respond to that? What I feel in every moment is very much that bad and worse; if that isn't evident, it's because I'm exercising a great deal of the discipline people are far too likely to assume I don't have.
I don't feel bad because I am stressed, though I am sometimes stressed because I feel bad. I can be passionate and quick to react emotionally to things, true enough - but stress usually manifests itself physically when people are unable to express their emotions otherwise, not when they are more than adept at doing so. Beyond this, common sense alone should make short shrift of the stress theory. Every stressful element in my life absolutely pales in comparison to stressful elements in my past. Traffic stinks? Check! It's really bad when you don't have a car and must weave your way through traffic while carrying your laundry baskets. Money is tight? Check! Former single mom - need I say more? So I get a little peeved when I hear people suggest that I sometimes list into walls because I'm stressed.
Similarly, depression is also out as the cause of this disorder. I'm happier than I have been in years. It's true, though, that my quality of life has been drastically slashed, and I do find that depressing. I often feel guilty for not doing more at both the office and at home, and for the unfair burdens my inability to do more has placed on those I love; this guilt does sometimes lead to bouts of depression. I've generally become depressed each time I've seen yet another doctor who has been lazy, disinterested, condescending, or some combination of these. But my depression in all of these instances is situational and reactive, not causative. And so far, I've been able to compartmentalize it fairly well. That is, I still find great joy in my family and home, and I'm still capable of gratitude for the many blessings in my life. My family and I laugh together hundreds of times daily. Whatever is responsible for this illness, it isn't depression.
As I said earlier, explaining this ordeal almost always backfires. So why do I try again now? Because if I don't do what I can to educate, I don't have much room for complaining if misunderstandings persist. Just as I've had to become an advocate for my health, I now have to become an advocate for a greater understanding of the effects of invisible illness.
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