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Living with a disease of unknown etiology is, let’s say, problematic. The lack of a well-defined cause stymies efforts toward a cure, and opens up a gaping void that gets filled, at best, with wide-ranging science, but more prosaically with a substantial amount of speculation, theories, and supplements. This becomes a morass that is incredibly challenging for patients to try to wade through, both intellectually and emotionally, especially because we’re talking about an affliction that includes both cognitive dysfunction and anxiety.
For me, not knowing the cause of my illness is fodder for my tendency toward rumination. Because there’s been no conclusive answer to the question, “Was that why?” over the past nine years, whenever I’ve read something about the illness that contains a fact that’s true of me, it’s gotten added to a mental list of possible hits that eventually – perhaps – did me in. It’s a fairly long list now. Moreover, I don’t even know if all of them were necessary. If I’d missed a few, might I have stayed well? And if there were some like that, which ones were they? After I got sick but before I understood the illness well, I did some dumb things I wish I could take back. Reflecting on all this is a habit that’s unhelpful in improving or curing me and has the side benefit of letting me feel guilty about things that are impossible to change.
So, my history of “if I had known then what I know now” moments –
- My father was diagnosed with Stage IV Hodgkin’s disease in 1978, when I was three. He had enlisted in the Navy more than a decade before I was born, and a later study in which he was included found that people with his job (machinist’s mate on nuclear subs) had double the average risk of developing Hodgkin’s. The cause was theorized to be exposure to solvents, metal dust, or radiation. He survived it, but went through 21 rounds of chemo and two additional recurrences before entering his most recent remission from it in 1982. I wonder if I have some of the same genetic chinks that he has, or if those exposures contributed some still-imperceptible genetic damage.
- He (my dad) is an engineer by training but also a gifted artist and excellent with his hands. When I was small, he built a wonderful set of cubby shelves that occupied one wall of my room. They were made of particleboard, and I wonder if the long-term exposure to so many square feet of it offgassing – not something that was generally worried about at the time, but certainly a problem for me now – influenced my health.
- I was not an athletic child – I was always the second slowest (generally right in front of the class’s overweight kid) when we had to run long distances in P.E. Likewise, during my couple years of youth soccer, I was always placed at left fullback, because I could haul off a good sprint but had no endurance. In later years, at summer camp, I was perennially at the back of our mountain hikes, with the counselors doing sweep exhorting me to push and me struggling to keep up. Was I just terrible at these things because I much preferred to read books and do crafts, or did I have some minor mitochondrial or other issue that contributed?
- I had terrible enamel – my childhood dentist told me it was hereditary – and had 10 fillings by the time I was 18, most of them amalgam. (Weirdly, besides one that developed under an old filling, I’ve had no cavities since then.)
- I took Ritalin for a number of years for ADD – did years of stimulants affect my growth and development in such a way that made me vulnerable to illness later?
- I was always prone to side effects, even with OTC meds. Was that an indication of sensitivity/metabolic issues that someday we’ll understand as an early warning system?
- Chimp, whom I met in 1997, had juvenile rheumatoid arthritis that segued into ankylosing spondylitis. There is some research that indicates that viruses may influence the development of those conditions. Did I catch some immune-influencing stealth virus from Chimp that caused AS in him but something entirely different in me?
- One night in April 2001, I went to bed with clear skin and woke up the next morning with sudden, terrible acne. What tipped in my body at that moment? Were there hormone issues that, if they’d been understood, could have kept me from heading down a path of chronic illness?
- Despite my misgivings about resistance, when the acne hit, I let a dermatologist put me on antibiotics for some months until I could get someone to take seriously the idea that my acne was hormonally motivated. (I was diagnosed with PCOS the next year and given anti-androgen treatment.) I wonder if this decimated my gut flora and thus opened some hole in my immunity that would not have otherwise.
- When we moved to Fresno in 2003, we found out after moving in that our apartment complex had roof rats. They ate the peppers and tomatoes off our plants, scampered along our gutters and inside our roof, and left piles of droppings in our garage, where our car was, the car I spent an hour and a half commuting in a day. They’re not known to harbor any diseases harmful to humans, but if there is a hidden virus that causes ME/CFS, and we don’t know what it is yet – maybe they carry it.
- Early in the diagnostic process in 2004, I underwent a stress test. I still had enough remaining fitness that I was able to make a pretty good showing, but afterward, it took two hours for my heart rate to come back down to normal. I was surprised and didn’t understand why that happened. I asked the cardiologist and my GP about it, and neither of them had any explanation for me. That, in retrospect, seems really dumb – it is obvious to me now that I was sick and my heart was saying so in the form of post-exertional malaise.
- Another thing I didn’t understand early in the disease was the frequent dizziness and vertigo I suffered, with the world pitching and yawing around me. I tried to figure out what activities in particular were causing the dizziness, because it seemed like sometimes it showed up when I had overdone things, but I know now that it’s just a symptom of the illness, and overdoing it was what caused it to worsen.
- I’ve mentioned this before: I didn’t know how to find an ME/CFS doctor early on (and I didn’t think having one was important, because there not being a cure, I didn’t think there was anything they could do for me), and as I’ve mentioned before, I wonder if early intervention might have resulted in me being less disabled than I am now.
- During the summer of 2006 I had a terrible crash and was no longer well enough to go to the office every day. My employer was willing to have me work from home, but only if I went to being a contractor, because they didn’t want to deal with other people asking to work from home (this had happened once before). So I went to contractor status, and in the process, of course, dropped my disability insurance coverage, which was through my employer. I already knew I wouldn’t be able to get any privately, but I figured I was going to work from home a while, regain my strength, and go back to being a direct employee. Things didn’t work out the way I was expecting. By the end of 2007 I was bedridden. I don’t know if I could have gotten the disability insurance to pay out in 2006. I kind of suspect not – I was mostly housebound but could still make it around the supermarket and such. I had to spend another year and a half running myself into the ground before I think I really would have qualified for disability.
- I will always wonder what would have happened if I hadn’t pushed it so much, for so long. Would I be where I am now? No way to say, and there was nobody in my world who knew these things to warn me then…
I know I’m not alone in this kind of thinking. What are some of the moments like this in your life?
No Poster Girl 
This was a really interesting post to read and consider. It can be hard not knowing, but I think it is important that we don’t beat ourselves up over what we could/should/would have done if we’d known better. That’s not to say it isn’t worth considering, as it might help us, or even someone else, in the future.
For me, I too had a lot of struggles with exercise growing up, especially when we were expected to run distances at school. I would always end up near the back and gasping for breath, along with the asthmatic kids, but because I didn’t have asthma I was expected to just get on with it.
One of the things I am certain was doing me damage was staying in a very stressful job (both the job itself, and because of an abusive boss) for too long. When I finally got up the courage to leave and moved into a job I enjoy, and which I am only working a couple of hours a day, my health improved somewhat, and even on the bad days it’s easier to take knowing I am at a workplace where I don’t have to push myself past my limits.
I also wish I hadn’t fought trying diet changes for so long, it turned out to be a major turning point when I allowed a doctor to put me on an elimination diet (which I hated, but at least I did it, mum had been trying to convince me to do it for years) and it was discovered that I had a number of food intolerances (to most of my favourite foods 😦 ). Since then however, I have learnt to love a whole variety of foods I never would have tried otherwise, and gained a love of cooking my own food (when I can) as well as the health benefits, so for that I am very much grateful.
One of the things that I am sure helped me, and will help me in the future, is that I accepted early on that this was not going to go away, and that I may be dealing with it for the rest of my life. This has allowed me to take the time to plan for a future where I may not be able to work anymore, despite my efforts to manage my health. I have made sure I have decent health and disability insurances, and with the help of family I nearly own my half of the house I own with my parents (due to the way the disability system works here, you are almost guaranteed to struggle to live if you don’t already own the place you live).
And I have been very lucky to have such a wonderful and supportive family to help me, which I am sure makes a difference 🙂
I’m glad you have a supportive family! My family is my rock too, I just don’t know what I would do without them and their care. Probably living in a gutter somewhere!
I’m sure every person with a chronic illness has considered these questions at some point. I agree that it is very important not to dwell on what could have been and beat yourself up about your illness. These kinds of thoughts used to plague me until I realised that plenty of people get sick for no reason at all and I wasn’t responsible for my illness. This is a change from when I was healthy and thought that a good diet and lots of exercise was the panacea for every malady known to man! (Yeh, I was a bit of a jerk.)
A few things really used to bother me:
– I had a very active lifestyle before I got sick and pushed my way through glandular fever, mostly because no doctor would give me a diagnosis or even consider testing for Epstein-Barr. If I had rested initially, could I have recovered instead of getting sicker and sicker? But plenty of people work/study through glandular fever and recover fine, I was just unlucky.
– Initially I was very slow in seeking help as no doctor had any answers for me. I thought I would just recover on my own. Especially when I started seeing alternative health practitioners who seemed to have all the answers, I really worried that if I had seen someone sooner, I would be better. However, most of these naturopaths/osteopaths/acupuncturists/Chinese herbalists were nothing but a big con job, robbing me of money and creating a false sense of hope. Now I am much more aware of the science behind illness and the scams that these kind of practitioners sell, and I don’t think I would have benefited at all from seeing them sooner (except, of course, I may have learnt that alternative medicine is a fraud more quickly).
– The worst one – I used to think CFS/ME was a punishment for pushing myself too hard. I just thought that once I had learnt my lesson and paced myself that I would get better (this probably ties into my erroneous beliefs about diet + exercise = perfect health). Actually learning that this is not true was a great weight off my mind.
Rejecting these ridiculous assumptions has really helped me make peace with my situation, and I hope you can leave your theories aside too for greater peace of mind. Don’t we already have enough on our plates without blaming ourselves?
I actually wish I had fought the over severe elimination diet that Dr Myhill put me on. That together with EPD injections really damaged me.
I also was the very worst at sport in school. I was worse than the asthmatics.
I put it down to liking bookreading and crafts, just like you noposter girl.
My fillings at the dentist were exactly the same as you too… a lot as a child and then no more.
I deeply wish I had rested when I first got ill. But even if I had the knowledge then that I have now, I would have had little choice because I was only 15 when I got ill.
I find it very depressing to look back in that way. I am a ruminator too. I have to push it out of my mind whenever it pops in, otherwise I get depressed.
There was a study done that said that more lethargic, less athletic children get this. I took it with a grain of salt b/c the docs that did it were psychiatrists. Now I wonder.
I got it and I was a non- lethargic child so am not sure they are right about that. Prior to getting it at 10, I danced, had a horse that I had to look after and ride, rode my bike everywhere, climbed trees and went for long walks with our dog. I was extremely active. It was hard to go from that to bed bound overnight. The thing I found was I was no good at team sports as my coordination was awful. I couldn’t catch or hit anything!
I think about this ask the time. Not to beat myself up but because that’s what I do- I analyse everything. I was sick as a kid, I lived in a very damp house, I lived with cats that I’m allergic to, I had constant sore throats and headaches as a teenager,I smoked, I restricted my diet, I drank too much, I took antibiotics all the time, I ate almost exclusively restaurant food for twenty years, I was on Accutane and the birth control pill continuously, I turned myself inside out working in a war zone of a job with all responsibility on my shoulders, I never slept properly, we also had rats in our attic, I have two dogs I’m allergic to, I had a penchant for drinking water in plastic bottles, I got a TON of awful dental work done shortly before I got sick, we bought a new cheap couch, recliner, carpet and particle board Ikea wardrobe shortly before I got sick, my thyroid is dead from ablation… wow, I didn’t mean for this to go on so long. I should just write my own blog post on this subject. I guess it’s not shocking at all that I’m so sick. 🙂
I completely empathise on this type of thinking. Even my own mother engages in it for me. We both wonder about cause, influencing factors, and things we could have done differently. I agree with others that it’s not worth over-dwelling on, but I do think it is a part of the process of coping with what’s happened to us.
– I realise now I was weakening before contracting the infection/virus whatever it was that changed my life. My mum remembers me having randomly swollen/puffy hands for no reason between age 8 and age 10 when I got sick.
– I remember prior to becoming obviously ill that I was under a lot of pressure. I was being prepared to take a school entrance exam, but I was cognitively struggling to process the information. As a child who had not struggled with studies or my brain before, I found this baffling and very difficult. I didn’t know what to do. I remember not wanting to let my parents down by failing. So I was obviously quite stressed.
– I continued in education until 18 taking massive chunks off and at one point a whole year off (for surgery). I felt that pressure the whole time. We both wonder if I had been pulled from school completely and home schooled, would I have gotten better.
– I was misdiagnosed at the beginning as having ‘just a virus’ and not EBV. I was being made to go to school for 9 weeks until the doctors realised their mistake (I had EBV) and ordered my immediate bed rest. I do wonder if that was my life sentence….
– I seemed to develop some form of dyspraxia -so I was hopeless at sports involving catching hitting running etc. That happened slightly before I became sick.
– I pushed myself to work at times when I think I should have just been resting.
– I was never seen by an M.E. specialist and still haven’t been. There were none that we knew of in 1991 (were there any?!) and it never occurred to us. I just thought I’d get better. I really wonder if they could have treated me for any co-infections etc.
– I grew up around crops and animals. I was exposed to flea treatments (including spraying the carpets!) containing organo phosphates. They sprayed the fields around here. Other people on my village developed M.E. (we have a high incidence here) and I wonder if I had lived elsewhere might I have avoided it?
– Even before I got sick I remember hating the smell of paint. My dad redecorated our house when I was 6 and I was exposed to loads of paint. Goodness knows what was in that but it stunk to high heaven.
I could go on, but will leave it there.
Yup.
Most particularly, what if I hadn’t been advised to do Graded Exercise in 2005? I went from mild to moderate, and never came back.
What if I hadn’t shared a drink with my sister in 1996? I got glandular fever and was really ill and wiped; she was fine. Was it because I was stressed about my A Level exams that I was so much worse than she was? Was it something genetic in me? Was this virus ever really defeated by my body?
What if I had had a C-section instead of trying to push my baby out? Would I not have become housebound?
Interestingly, when I was a teenager, despite being able to run long distances, my heart rate would go alarmingly high, and take ages to return to normal. My face would go bright red with patches of white when I ran, even for hours afterwards. Some kind of circulation problem?? Why was my heart acting like I was really unfit when I could run long distances and was underweight?
It’s that kinda stuff that gets you at 2am…
Yeah it does get you at 2 a.m…
I beat myself up about and carrying on school psrt time from 17-19 years old when I wasn’t well enough …and even agreeing to on a trip with my parents that worsened me.
I had doubts at the time but every bloody doctor told me these things were good. I beat myself up for ignoring those doubts.
Other things I ruminate on:
– Doing rat dissection in Biology at school after I was ill.
-Painting while inhaling painting fumes at age 14, a year before I got ill.
– Why was it just me that got a cold/flu after every swimming lesson at school?
-I contacted EBV from my first kiss at a party with a boy at age 15. I often wonder what would have happened if I had never gone to that party.
Then I try to push these things out of my mind because it just brings me down.
Vicky – I see you got ill around the same time as me. I got ill in 1992. Yes, I also wondered if there were any CFS docs were in existance in 1991/92.
Rachel – wrote a reply and lost it. 😦
Are you located in the US? I’m in the UK. In the short stretch of houses along my road (12 houses) 6 people (children/teenagers) since 1991 got ME and one adult has a CFS like illness (may or may not be ME). In my village I know of at least 19 cases of ME. I do wonder what is the link?! Most cases occurred in the 1990s or early part of the 2000s. These figures seem so high for a place that is not large! I do think maybe if I had lived elsewhere I’d have avoided ME or perhaps gotten sick a lot later in life.
I wonder also what would we be like if we’d had the medical intervention of an ME specialist?! I have never had any ME-specific help at all. It’s frustrating eh?!
Perhaps the planet has been screwed up to such a degree (e.g. with chemical emissions, adulteration of the food chain, extreme pharmacopoeia, etc.) that anyone with a particular susceptibility (genetic and/or environmentally caused) was not going to escape the crud, no matter what.
Shrinks, in particular, seem to blame this illness on the patient. Perhaps the greater blame lies with the greed and ignorance of humankind.
Jocelyn , I wonder if you could ask Dr Cheney about something he said at a talk he did a few years back. No one in the audience seemed to pick up on it, but he mentioned that prior to the 1980s most people who got ill with say Lyme Disease or other infections generally recovered, but after that time people seemed to be becoming chronically ill with these infections. He has said in the past that impaired immune function in ME/cfs might be due to chronic low level exposure to extremely low frequency electro magnetic fields. I’m thinking maybe he means that the widespread use of computers, and cell phones became commonplace around this time. Wondering if he thinks there is a connection there, as he does seem to think we are unable to gain electrons through reduction and that we are in a oxidising state. I would be grateful if you could perhaps ask him about this and whether we, as sufferers, should be limiting our time around laptops etc.
He does still have some suspicion around EMFs, though in my conversations with him, he’s never linked it to acute vs. chronic Lyme. He suggests that people eliminate them from their sleeping area as much as possible. He’s also done his trademark echocardiogram comparing someone with a live cell phone on their chest and with it totally turned off, and says there is as difference (forgive me for not being able to elucidate it better at the moment). I know I can’t sleep with a live computer or cell phone in the room, though I haven’t gone as far as eliminating my clock and turning off the circuit breaker to that part of the house, which he suggests.
Thank you so much for replying. I guess the lesson here is that anything that interferes with immune cell signalling is detrimental to us on an ongoing basis. I have certainly heard that gut and (subsequently) brain inflammation can lead to sensitivity to electricity.
Thank you for this and for all your posts, Jocelyn. Despite the caring support of family and friends, this is, as we all know, a very isolating illness. Your thoughtful posts are a source of information, insight, and comfort for me.
On the “Hindsight” theme – For me the factors that come to mind are two things I had little or no control over – an out-of-whack immune system and viral illnesses, and one thing that I could have controlled – going back to work after I got sick with CFS.
Immune system: severe childhood allergic reactions to horse serum and penicllin; as an adult, the development of allergies to several other antibiotics; in 2000, severe onset of chronic idiopathic urticaria with angioedema.
Viruses and going back to work: I came down with CFS in February 2010 (but was not diagnosed at that time) following a mild viral illness and had to take a medical leave from teaching the remainder of spring semester. Feeling better over the summer, I returned to teaching in the fall, and even though my department gave me the lightest possible teaching load, it was too much. It wore me out, and another virus at the end of that semester sent me from functioning at maybe 70% to a scant 50%, which is where I’ve stayed.
I wish I’d known the risk of overdoing: I’d been told I had “post-viral fatigue” and would recover completely. Had I known about CFS and the importance of rest, I wouldn’t have gone back to work (I was close to retirement anyway, and my spouse could have supported us both). It was a year and a half after onset that CFS was first mentioned to me as a possible diagnosis, but by then damage had already been done. I know I’m not the only person to have had a delayed diagnosis – it is frustrating to me to think that others who are developing this syndrome now may also be in the dark about the consequences of doing too much.