Why did I get sick?

There is so much that we don’t know about what causes mental illness, and very little that we do know.  This means that asking why is rather futile at this point, but it’s hard not to.  It feels like maybe if I had some idea where my depression was coming from I’d have a better idea how to manage it.

We know that there is often a genetic element to mental illness, but we know very little about how that actually works.  One way of examining this is twin studies.  Monozygotic twins come from a single egg and sperm, and so have identical DNA.  Dizygotic twins come from 2 separate egg/sperm pairs, so they do not share the same DNA.  The concordance rate (probability of sharing a specific trait) for major depressive disorder in monozygotic twins is almost double that for dizygotic twins.  For schizophrenia, the concordance rate is even higher, suggesting an even stronger genetic link.  In my own family, there was one great-uncle (possibly two) on my dad’s side with schizophrenia.  That’s it  There is no other known mental illness in the family.

Childhood trauma may be a contributing factor, and there’s some really interesting data from the Adverse Childhood Experiences research on this.  Stress and trauma, particularly in childhood, can cause “epigenetic” changes.  We have the genes we’re born with, but it’s more complicated that that.  Sections of genes code for various proteins, but when and how our bodies decide to actually make protein based on that code is studied in the field of epigenetics.  Interactions with our environment are a major factor, but there is still so much more to learn in this field.  There is even some research suggesting that epigenetic changes can even be passed down to offspring.  It’s a really interesting area that I suspect is going to be the source of some major discoveries as the science moves forward.

Yet I didn’t have any childhood trauma.  Yes, I had the “normal” challenging experiences that people are likely to have, but I was not abused, neglected, or bullied.  I was lucky enough to have parents that were caring, affectionate, and supportive.  We were financially secure enough that I had opportunities that might not have been available to others.  I did well in school, and although I was kind of geeky and unpopular, I was generally quite comfortable in my small circle of close friends.  The really challenging stuff that’s happened in my life, including bullying, came after I got sick, not before.

Substance use was never an issue.  Yes, I drank a lot of alcohol in my late teens and early 20’s, but there were no apparent negative consequences other than the odd hangover, and I had no problems stopping drinking when I moved on to the next stage of my life.

I was not someone who was prone to low moods.  I’ve always been emotionally sensitive, but overall I was a happy, optimistic person with good self-esteem.  I didn’t have my first episode of depression until age 27, although looking back there may have been an earlier hint of things to come.  When I was around 15 I had a period of 2-3 months with unexplained physical symptoms, including weakness and fatigue severe enough that I could barely get in and out of bed.  Various tests were done, but no physical cause was identified.  From what I can recall, I was terrified by what I was experiencing, but my mood at the time was numb more than anything.  Still, physically there is a definitely a resemblance to what I experience when my depression causes psychomotor retardation (significant slowing of movement and thoughts).

When I had my first episode at 27, it came on over the space of maybe 4 months, triggered by situational stress.  My ex-boyfriend and I had remained very close friends after I’d broken up with him, but then he started dating someone and all of a sudden my best friend didn’t want to be in my life anymore.  It was difficult, but something that I had sufficient coping skills that I would’ve expected to be able to handle it.  I had two suicide attempts in the space of a couple months, then ended up in hospital for 2 months, psychotic and continuing to try to take my own life.  Later that year I went off meds because I felt they weren’t working, but I ended up achieving full remission despite that.  I stayed well for 4 years, and then got very sick again very quickly, with no apparent trigger.  I noticed symptoms coming on and got started back on meds quickly, but within four weeks I ended up in hospital.  It took a year and a half, 3 hospitalizations, and many different treatment trials to get into remission.  It wasn’t a stable remission, though; there were a lot of bumps that were mostly manageable with increases in my medication dosages.  That is, until I had another relapse almost 2 years ago.  My illness is now more treatment-resistant than ever.

So where the heck did this come from?  I doubt I’ll ever know the answer.  In the end I suppose it doesn’t really matter all that much, but I wish I knew more about this beast that has intruded into my life.  How did it sneak up out of nowhere, and why did it pick me?  Is it the ghost of that distant great-uncle’s genes swooping in to haunt me but sparing everyone else in the family?  There can be no answers, only more questions.  I hope that some day science is able to start to answer these questions for others, even if it comes too late for me.

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26 thoughts on “Why did I get sick?

  1. Donnalee says:

    I feel that everyone has a degree of ptsd, and certainly if your boyfriend and you broke up, that could cause a degree of it. My views tend to be buddhist-psychological in nature, and they say that the three ‘poisons’, of attachment/greed, ignorance/denial, and hatred/aversion cause all suffering. So my personal suffering comes from me being very unhappy that certain good situations in my life have ended, plus somethings exist that I don’t like, and me denying that that is true, and me wanting things to be different than they are now. If I had the less-ptsded skills to loosen up and let the world be the way it seemingly is, and know it changes all the time, I’d feel less freakout and stress, so I am trying to do that. Sometimes it works for me and sometimes not, but buddhism lays out what works and what doesn’t to reduce suffering–things like practicing the virtues and avoiding bad actions ( I can list them sometime if you’d like, but they are pretty basic like no stealing, killing, or ‘sexual misconduct’, which means not to go against vows you have taken and not to molest others). I think various versions of things fall into these categories and help people at different times. It pretty much boils down to having compassion for self and others, rejoicing in any good that anyone does, and trying to gain wisdom about what works and what doesn’t, and the skills to apply them. That’s buddhism 101 and I hope it helps someone. I go to a Tibetan medical doctor and he gives me little balls of medicine, and they help me with everything from repairing the braina nd nervous system to sleep. It treats the whole body and system, and I have had good results with it, although I don’t always like the taste of them and have to grind them up in a little coffeegrinder to make them easy to swallow.

    It’s just another way to view possible situations–

  2. Meg says:

    Is it possible you had mono at 15? It could even be chronic fatigue syndrome, which, when triggered, is messing up your brain chemistry. Have you had a complete neurological work-up? I’m curious… I’m like you in that mysteries just drive me nuts!! I always want to KNOW!!

    • ashleyleia says:

      Yeah, interesting mystery. No, it wasn’t mono (although I did have mono later in life). I was worked up by neuro and internal medicine, and they found nothing. I wondered about chronic fatigue but it didn’t end up being chronic. I’m kind of inclined to think it was depression for lack of another explanations, but who knows, maybe it was some obscure virus or something.

  3. Karen Horsley says:

    What you write about epigenetics is very interesting, I will have to read more about that.
    Interestingly, my first diagnosed depression was around age 30 (I can’t exactly remember) in response to infertility and failed ivfs. But like you, armed with the knowledge I now have of my illness I am aware I had episodes around age 15 and age 20, both in response to trauma.
    I think when you’re a child it’s very hard to know what is wrong except that you don’t feel right,

  4. LiveNotExist says:

    Its so important that we kill the rumor that only ppl with rough childhood or massive abuse in any way get depression or anxiety. That there has to be so much “wrong” to get panic attack etc. it can hit you like a lightning from the clear sky and without any warning…

  5. Revenge of Eve says:

    I have read that depression is a loss of soul. Along with the genetics. What I read actually made sense for those who never showed signs of mental illness.
    I know for me, I was born “difficult”, “different”(bipolar) and that can be traced back to my childhood. It is evident in my family tree just from looking at my immediate family. Although theirs isn’t as serious as mine, It exists. Substance abuse skipped all in my immediate family except for me but runs heavily on my Mom’s side of the fam. She was the only one not to abuse drug’s and alcohol in her family of five.
    This is a very interesting post Ashley, I enjoyed it.

    • ashleyleia says:

      Thanks. It seems like there are so many different factors at play and they can be totally different from one person to the next. The mind is such a complex thing.

  6. Brazokie says:

    I still don’t accept depression 100% of the time. If the “why” could be answered I bet it would make this easier. But it can’t. While I understand my past better today, I still can’t accept it. The logical side of me does, but how I really feel when I think about it is to curl up in the floor and hope I can just disappear. I write and read in the hope it will help me accept who I am.

    Depression feels like having a parasite so deeply rooted that removing it entirely would disfigure me beyond repair. An invisible parasite that makes this journey ever so lonely. Thank you for sharing your journey.

  7. howikilledbetty says:

    I just don’t know where mine came from … I don’t know if there’s any genetic link because stupidly I just couldn’t talk to my mother about it when she was alive and everyone else is dead. Thanks for this post, it helps ☀️

  8. lavenderandlevity says:

    I just go with the standard “genes and environment both play a role. With low genetic disposition and no trauma or environmental exposure, you are usually fine. With trauma and low genetic propensity and/or high protective factors you might be fine. With high genetic predisposition and low trauma you still might not be fine. With high both – totally my family history, with chronic history to boot – you probably won’t be, but even then I have high protective factors and am probably more okay than you might expect given my ACE score. Also, I don’t assume genetic predisposition means rampant family history. A researcher into other types of genetic predispositions towards chronic physical illness recently reminded me on her blog that often the most severe symptomatic presentations of an illness stem from new genetic mutations triggered for the first time (either epigenetically or because, hey, mutations happen in gestation anyway) in one family member in a family that otherwise has only modest overall propensity.

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