MH@H Mental Health

Mental Illness Life Doesn’t Come with an Instruction Manual

Mental illness life: jellyfish with symptoms as the umbrella plus tentacles as so much more jelly

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.

Identity

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.

Relationships

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 upfront 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 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.

Stigma

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 yout 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?

Mental health resource directory from Mental Health @ home

The Mental Health Resource Directory page has contains a wide selection of useful mental health websites and apps.

44 thoughts on “Mental Illness Life Doesn’t Come with an Instruction Manual”

  1. I try to maintain humor about it, which helps me cope, but it’s not always easy to do. I KNOW my OCD is silly, so it’s pretty easy to laugh at my obsession with lists, plans, checking, etc., but it’s harder to find the joke in my ongoing body image issues…

  2. I also try to keep a humorous side to it. But being bipolar can be exhausting at times. I’ll make jokes but inside I’m in pain.

    It’s tough being a Christian suffering with mental illness. I’ve had people tell me my faith wasn’t strong enough and that’s why I was anxious and depressed. “Oh just pray it away.” “Your faith is weak…” It’s such a struggle at times.

    Mental illness does NOT discriminate! It can affect Christians as well as unbelievers. The stigma around mental illness needs to be addressed more.

    1. I’ve heard that from other Christians as well. I like the comeback that I’ve heard that they can pray, but they also need to take the help God sends them in the form of medication and/or therapy.

  3. Good post Ashley… and I love the jellyfish analogy…

    Let’s face it mental illness ain’t pretty, and will never be easy to deal with, for ourselves or others, but the people behind that illness are worth holding on to.

    People are much more than a diagnosis, or a load of dysfunctional symptoms.

    We may not particularly love the mental-illness. But the person themselves we do love.

    Focus on the person, not the illness.

      1. Exactly… its a bit like having a delicious meal… and there is something on the plate you don’t like…

        Quite honestly there is always going to be something perhaps we are not keen on or don’t like… but that actually can tell us a lot about ourselves if we look at it in a healthy kind of way psychologically…

        “My perception of you is a reflection of me”

        Getting back to the meal….

        Do you turn the whole meal away because of that one ingredient you don’t like, or do you just put that to one side and enjoy the rest of the meal?

  4. Wow this is a great post! So many truths in there, things I discovered when I was “going down the hill” and in the end, finally got some diagnosis that made sense for me… 😊 Thanks for writing this! 👍🏻

      1. Many people fear the labels. They may get as they think they’ll only be seen as just that label. But for me, they helped me so much as with them, I was able to educate myself on them and in a way, get to know myself better. If I cannot understand myself, how can I expect others to do so? 😊 I reblogged this post on my site, maybe it will help some more people! 🤗

        1. Thanks!

          Yeah, label stigma sucks. But I also found that knowing what was going on made it easier to manage. It also helps to be able to connect with others with the same issues and see that others are going through the same kinds of things.

  5. Autism raises even more complicated issues regarding identity, in that it’s even less separate to ‘me’ than my mental illnesses.

    I definitely agree with grieving.

    1. I would imagine there’s some overlap in that sense between the neurodevelopmental disorders and personality disorders, both in terms of the identity itself and the stigma associated with that identity.

  6. Such an important post!! Thank you for including my post on those things we all grieve when we can no longer count on good health, physical or otherwise. Love and hugs to you!

  7. For some disorders, emotions are referenced in treatment and healing. If you were neglected, you might not understand feelings. The instruction manual could teach us what feelings are, how to feel them without being overwhelmed, why feeling them is helpful, and what useful info they might be telling us

    The manual could describe options for treatment, like Ashley’s books do. It could encourage us to keep trying new, different modalities and types of treatments under the supervision of a competent (maybe doctoral level) healer

    1. I think it would be good if, in addition to academic school, there was life school available for kids run by competent healers so there was a way for all of those kids that aren’t able to learn at home the fundamentals like understanding, working with, and communicating feelings, and the value of compassion, self-compassion, and acceptance. Given how many people don’t get the support to learn those foundations at home, I would love to see people not have to wait until their adults to try to learn those things they were deprived of.

  8. As mentioned, this was great. You’re so right – much comes alone with mental illness that isn’t perhaps covered by those giving the diagnosis. There’s a lot to know and considered. I really liked this line, “Is it considered acceptable for you to own that aspect of your identity?” I would say, in my life, the answer would be no. I always feel like they’re waiting for me to be done. They don’t get the whole “this is part of me” aspect.

    I agree with everything in the manual so far. Understanding that your life is likely going to be different is important. I’ve been lucky, mostly stigma hasn’t been a problem. An exciting career is toast though. I’d also mention battle fatigue. The battle gets old and tiring: often you’re ready to give up long before your mental illness plans to call it a day.

      1. Yes! Like when you get a panic attack while grocery shopping. Part of my brain is all, “seriously? I have to get this done!” 🙄

  9. This is good. In the coaching I lean into it and normalize it. I will admit though, when I read the title of this, I thought, “Wait! The sane got an instruction manual??!!”

  10. “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 yout head. Now, the brain lives in the head and controls your body, but no one cares about that minor detail.”

    THIS ^. Hence the invasive individual in my recent post pissing me off tremendously.

      1. Kinda wondering if telling him that he ideally should avoid disclosing his diagnosis of schizophrenia is going to be helpful or harmful. I would normally do so but I don’t want to unblock him to tell him. 😅

        The autism is fine, that’s validated and he gets accommodations due to it

            1. Next time I feel guilty about my anger towards him, I’ll remind myself: “Dude with 3 therapists at once, 1 of which is a really expensive clinical psychologist + his parents paying his bills and him living rent free… has the freaking audacity to judge me for being in DID therapy on sliding scale with my long term clinical psychologist.”

  11. “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.”- only just truly started to acknowledge this. After years of trying to include others in my navigation. And I don’t even know where/how I am going!
    This post…..brilliant!

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