“When you’re sick the act of living is more act than living” Meghan O’Rourke
Meghan O’Rourke’s piece in the Aug. 26th, 2013, issue of the New Yorker “What’s Wrong with ME”: “I had an autoimmune disease… then the disease had me” is about her struggles with an autoimmune disorder, not chronic fatigue syndrome (ME/CFS); but her story of her boundary leaping disorder, her malleable test results, her soul sapping fatigue, her difficulty navigating the medical world, and the crucial online support she received was too relevant to pass up.
Meghan’s story, and some of the blogs over the past month, have pointed out the broad range of ME/CFS-like illnesses that exist. Some are autoimmune (Sjogren’s Syndrome), some are more neurological (POTS), some have anatomical components (Chiari malformation), and some don’t have any labels. The number of ME/CFS-like patients plagued by fatigue, orthostatic intolerance, pain, and cognitive problems who drift in and out of the medical world never quite fitting a standard category, (and rarely finding relief) must be enormous.
We are not alone. Meghan’s and Lauren Stiles’s story (earlier) indicate that many people with chronic illnesses are grappling with the same unsure diagnoses, the disease overlaps, the old disease boundaries that often obscure, and the lack of good treatment options. We’re like separate communities, mostly unaware of each other, circling around the same concerns.
A Chronic Fatigue Syndrome-like Illness
The very chronic fatigue-like beginning to Meghan’s story includes a stress-filled year of her mother’s death (see her memoir “The Long Good-Bye“) that ended up with debilitating fatigue, aching lymph nodes, and finally a diagnosis of Epstein Barr virus reactivation in 2009.
Migraines, fatigue, buzzing feelings in her throat, numbness in her feet, and no less than three recurring viruses (all associated with ME/CFS; EBV, cytomegalovirus and parvoviruses) followed. She doesn’t state what treatments she tried or didn’t try, but at this point she would have fit right into Dr. Peterson’s subset of immune dysfunctional patients. Let’s just say she had ME/CFS.
Skip forward three years, though, to February 2012 when, three days after noticing a little rash on her arm, her fever begins to be followed by headaches, dizziness, and cognitive issues. By March, her brain enveloped in a “thick gray fog”, this poet, critic and journalist can no longer read or write. She doesn’t feel apathetic and wants to work, but she just cannot; her mind and body are too out of sync.
“To be sick in this way is to have the unpleasant sensation that you are impersonating yourself” Meghan O’Rourke
She’s coping with a fatigue so intense it can only be described as mind-altering, and this brings on a state she describes as a’ loss of self’ (that I vividly remember from my own experience). Like a puppet on a string, some innate inner guidance system keeps her showing up at her friends’ homes, at her doctors’, at her work but showing up is about all she can do. The thinking, interacting, participating being that made up Meghan O’Rourke in the past is gone, replaced by a shadow–a wraith–of her former self. Her body is there but she isn’t.
Despite her increasing debility, her doctors don’t get it–and you have to wonder if a gender bias is showing here–offering up medical platitudes like “you’re a little anemic,” “your Vitamin D is a bit deficient,” etc. Meghan finally hits pay dirt when a Women’s Health Center doctor looking over her family history (rheumatoid arthritis, ulcerative colitis and thyroid disease) suggests she has an autoimmune disorder.
She does have an autoimmune disorder–autoimmune thyroiditis (AT)–but the diagnosis quickly starts to crumble. The thyroid drugs make her worse, not better; her blood pressure tanks, she faints getting out of bed, and she gets itching sensations.
Her dreams of a simple fix die. It turns out that she just doesn’t fit the designated categories; she has autoimmune thyroiditis and some form of another–never specified–autoimmune disorder. She finds out that the antibody counts aren’t the last word in autoimmune thyroiditis (AT) either; that people with full-blown AT sometimes have low antibody counts, and some people with high antibody counts are as healthy as can be.
Welcome to the grey area of chronic illness and autoimmunity.
Her belief in the effectiveness of our enormous and enormously expensive medical establishment begins to crumble. Big buildings and expensive machinery don’t confer certainty and hefty fees don’t necessarily translate into results . You can see the best of the best and still not get better.
Despite the fact that autoimmunity is the leading cause of illness in young women, the average time to diagnosis is five years. The system is clearly not working well. Sensing that her doctors don’t really know what to do, Meghan does what so many others do: she turns online.
“I fell into the rabbit hole, and emerged in another world, online.” Meghan O’Rourke
Like so many others she took refuge in the online world which suggested, like a page right out of the ME/CFS playbook, that genetic susceptibility, combined with toxins, stress, gut problems (caused by an ‘inflammatory diet’, bad bacteria and food sensitivities) were the source of her illness. The thyroid supplements simply masked the problem.
Dropping out of the workforce, Meghan goes to work on her diet with a passion; no gluten, no refined sugar, little dairy, organic meats and vegetables started her new treatment regime. Jumping on a trampoline and natural bristle body brushes stimulated her lymph system. Dairy free kefir (from coconut) mixed with cinnamon and ground flax seeds focused on the gut. Supplements from a nutritionist followed.
She felt worse at first, but after three weeks the fog began to lift. For the first time in years she could eat without headaches, her blood pressure normalized, and she even began to jog occasionally. A doctor visit indicated her thyroid levels were still off, but her previously-observed antibodies were gone.
She was on her way to recovery… or was she? A relapse in November (fatigue, fever, muscle aches, itching, joint pain, bruising) sent her back to the doctor to find her labs normal except for thyroid. By April her headaches and dizziness had disappeared and she was feeling less run down, but she began having painful burning sensations in her head, neck, and back and neuropathy in her hands.
A New ‘Normal’
“You can’t muscle your way through the enervation and malaise of autoimmunity” Meghan O’Rourke
Her doctor’s suggestion this was the ‘new normal’ left her deflated. A rheumatologist discovery of more autoimmune issues left her no new options. Her neurologist’s suggestion that her autoimmune system was destroying her small nerve fibers provided no new opportunities for treatment.
“I had joined “The First Assembly of the Diffusely Unwell”
Given all her symptoms – which came and went without pattern – she wondered if she was to some extent crazy (her doctor informed her she was not), and she trod a balancing line between being focusing too much on her symptoms or being too dismissive of them She knew that getting a diagnosis often makes peoples symptoms worse but her experience taught her she was also dealing with a medical community that could, all too easily, let her fall to the wayside…
“I had an autoimmune disorder but now it had me” Meghan O’Rourke
By now her diet/nutritionist work has left her about 80 percent better, however, and this is where her story diverges from many people with ME/CFS. She’s not well but she’s gotten healthy enough to relax a bit. She realizes she’s become trapped in her identify as a ‘sick person’ that her ‘search for clinical illumination had grown claustrophic’. Not healthy but not as sick as she was she starts to withdraw from the search.
“I want to go for a day without thinking of my body” Meghan O’Rourke
She still misses her life before her damaged body shoved itself in between her and the world; when she was able to simply be there, feeling the sun and the wind on her skin, without the yammering of a damaged body obscuring that. That long list of uncompleted medical tests her doctors suggested probably isn’t going to be completed. She’s getting off the hamster wheel. Like her aunts before her, she’s going to accept and move on…
Did she stop too early? Only time will tell; there’s certainly no telling with autoimmunity what the future will bring but for now she’s much better.
The Diet Week
For me Meghan’s story reinforced the power of diet – something I’ve known about but flinched from for decades. Diet certainly isn’t the or perhaps even an answer for many people with ME/CFS, but if a diet change can get someone with two autoimmune disorders back to 80% that’s something to think about. We’ started off with Niki’s first blog on celiac disease and gluten sensitivity and we’re going to be looking more at diet throughout this week.
- Next up – the Story of a Boy with a Thorn in His Joints…..