When you first get a mental illness diagnosis, it’s easy enough to look up and see what the symptoms are, but no one ever tells you there’s a whole buttload of other stuff that goes along with it. The mental illness experience covers so much more than just the symptoms, and it doesn’t come with an instruction manual. It’s kind of like this jellyfish; you’ve got the head type of thing (called an umbrella) that’s like the symptoms, but then you’ve got all kinds of jelly dragging along with it. This post will look at what kind of jelly that might consist of.
Whether or not you had much sense of who you were to begin with, mental illness makes things more complicated. What’s you, and what’s illness? Is there a dividing line, or is it all tangled up together? Does that illness diagnosis fit with the way you see your condition, or does it seem off? How does the way other people see the diagnosis affect how they see you? Is it considered acceptable for you to own that aspect of your identity? Do you even want to own that part of your identity?
So many questions, so few answers.
Chances are, mental illness is going to make social relationships more complicated. Friends and family may or may not understand what you’re experiencing, and may or may not be supportive. Or they may try to be supportive in ways that are all kinds of invalidating.
Illness can also produce some behaviours that can be hard to get along with. I don’t normally experience irritability as a result of my depression, but when I do, it’s ugly. Plus I ghost, which isn’t very nice, but I’m beyond caring at this point.
Then there’s the question of what to say, and when to say it, to new friends or potential significant others about the illness. Do you put it out there up front to weed out judgy folks right from the get-go?
Changes in life course
You may have had plans for your life. They may have been good plans, and you may have been on track (or mostly) with your progress. Then the mental illness freight train rumbles on through. Priorities? Changed. Career? That might go down the toilet. Kids? You might worry about passing on your crazy genes to them.
Was money an issue before? It’s more likely to be when you’ve got meds and/or therapy to pay for. And if you can’t work because of illness-related disability, you may be stuck living in enforced poverty because of limitations on disability benefits, if you can even access them in the first place.
Depending on your individual brand of crazy, it might get better or worse over time, or it might stay the same. It might stop responding to treatment that used to work, or it might somehow manage to fade off into the background. You never know, and that unpredictability makes planning for your future that extra bit harder. Damn that lack of instruction manual!
One thing that I hadn’t anticipated in the early days of my illness was the amount of grieving I’d have to do. Abigail at No Half Measures wrote recently about all of the little deaths that result from having metastatic breast cancer. While my illness is unlikely to kill me in the near future, I’ve also had to grieve the loss of parts of myself, my life, and my future. I’ve (mostly) worked through that to get to a place of acceptance, but it was definitely a process rather than something that happened overnight.
Ah, stigma. The gift that keeps on giving. It can be pretty hard to avoid people who decide that you’re dangerous, unpredictable, unreliable, and/or incompetent because you have a mental illness. All that social baggage gets locked onto you like you’re the ghost of Jacob Marley hauling around his chains.
There are supposed to be laws to protect your rights, but not everyone is going to care about that. You’ll likely be faced with the decision about whether or not to disclose your illness at work. You’re entitled to reasonable accommodations just like anyone else with a disability, but that doesn’t mean you’ll get them.
It can be hard enough to find good health care to begin with, but as soon as you’ve got a crazy label attached to you, you become persona non grata in the health care system. It doesn’t matter whether the issue of the moment is mental or physical, you’re more likely to be deemed attention-seeking and possibly drug-seeking, and your symptoms may well be brushed off as being all in your head. Now, the brain lives in the head and controls your body, but no one cares about that minor detail.
I don’t think you’re ready for this jelly…
If other people can’t figure out how to handle all of your mental illness jelly, that’s their problem. You’ve got enough to do figuring out how to navigate it on your own.
Is there anything you think needs to be covered in the nonexistent instruction manual to mental illness life?
The So You’ve Just Been Diagnosed with… [a Mental Disorder] page brings together information, advice, and resources from people who’ve been there. New input is always welcome!