So You’ve Just Been Diagnosed with [a Mental Illness] – A Project

I’m planning on creating a page on my site with info and tips for people who’ve just been diagnosed with a mental illness, and I’d like your help. I’d like you to share what the top 1-3 things are that you’d want to tell someone newly diagnosed with your condition (and let me know what your diagnosis is). Unless you would prefer that I didn’t, I’ll include a link to your blog on the page.

Thanks for your help!

80 thoughts on “So You’ve Just Been Diagnosed with [a Mental Illness] – A Project”

  1. Accepting My Mental Illness Diagnosis
    Immediately after my psychotic break, I did not want to believe that I had a mental illness. I kept asking my psychiatrist to reduce my dosage but then I couldn’t sleep. Getting a mental illness diagnosis feels like a death sentence. In a way it is. Your old self has died. My psychologist explained to me that having a psychotic break is like having a psychological house with a cracked foundation. Not only that, there’s a pit underneath your house. So, when the foundation breaks, your entire psychological house falls down into the pit and breaks into a thousand pieces:
    • And while you are grieving who you were,
    • They are playing medical Russian roulette,
    • Your eyes are dilated and you have vertigo,
    • Your friends are telling you, “Why don’t you clean out those closets!”
    • It’s your job to put yourself back together again.

  2. I was (finally) diagnosed with Borderline Personality Disorder in late November/early December. The three things I’d tell someone who was newly informed are:

    1) Be kind to yourself. One facet of the disorder is being highly ‘sensitive’ to criticism and when one is criticized, internalizing and blaming ourselves for what ever thing it is that the complainer found ‘wrong’. It’s not easy but learn to take a position of “I can’t control what other people think, do or say, but I CAN control how I react to that.”
    2) Become educated about what BPD IS and learn to spot the triggers or signals that you’re about to have a melt-down OR go all “Attila the Hun” on someone’s butt.
    3) Take things a day at a time. Let the mistakes of yesterday go and focus on becoming who you want to be.

    I guess those are three that I’d tell someone if they asked me about BPD. I didn’t know much factual information about it except what I’d gathered from watching my mother (who also had it, in all probability) react. I decided long before they diagnosed me that I would NEVER be like my mother, yet here I am. I suspect from reactions I’ve gotten that I have some of Ma’s traits (the uglier ones) and that horrifies me. So I work on educating myself and others on the subject. I may even do that too much, at least according to some bloggers here. But refer to #1 for solving that.

  3. I have Bipolar I with mixed episodes and ultra ultra rapid cycling.
    I was first diagnosed with low-grade depression and it took a regular doctor to realize I was bipolar. I asked him for anti-depressants and he asked my symptoms. That’s when he realized I was bipolar. I figured it out on my own shortly after being diagnosed and it took the doctor over 5 years to correctly diagnosis me.
    I agree that doctors often play medical Russian roulette
    I had one psych prescribe me a medicine that my regular doctor sent me to the ER for. My resting heart rate was double what is should be. I fired the psychiatrist.
    You are the best advocate as a friend who had bipolar went to his regular doctor. He complained of chest pains, but the doctor dismissed it as bipolar symptoms. Three days later, he died of a heart attack. Had the doctor listened to his heart or run an EKG, he would have realized it was a heart attack.

  4. I have Bipolar 1 with mixed episodes.

    I would let someone know who was newly diagnosed that there are numerous resources out there that you can rely on to lead a healthy, happy productive life. It won’t always be easy, but try to be consistent with medication, psychotherapy, and self care. Reach out to people who love you, and be as honest with them as you can about how you are feeling. Keep a mood chart, and bring it with you to appointments with your doctors. Look up resources by Julie Fast (particularly her Health Cards) and Natasha Tracy.

  5. I had a psychotic break in June last year that lasted for about 4-5 months because I couldn’t get into any stress center or psych ward! I finally got a good psychiatrist and talk therapist and started a regime of pills! I’ve been diagnosed with Bi-Polar I with mixed matrix episodes, Major Depressive Disorder- moderate to severe, Generalized anxiety Disorder, PTSD, panic disorder and sleep Disorder.

    First I would want you to know that your not alone in this! Help is at the end of your finger tips, you just have to text/call/email to reach someone who can help.

    Second, if you want to feel better, you have to put the work into your therapy, you have to be willing to look at yourself and embrace that your old self is gone. That person will never come back because you are different now. You may not like that but once you start making progress in your treatment and making progress with embracing who you are now.

    Third, having a hobby to help you let out your emotions and feelings in a good way is essential. I’m a crafty person so I have painting, coloring, making cards, and scrapbooking. I’m also an avid reader so I try to read a book every month.

  6. When it comes to depression and anxiety, remember to breathe, you are not alone, and make sure you have at least one person that you can always contact that can help you get through things.

  7. Schizoaffective disorder, bipolar type although original diagnosis was bipolar !. I also have social anxiety

    My advice:
    You may not be able to get your old life back, but you can create a new one.
    Decreasing stress was an important way to decrease my symptoms
    It may seem like you are a guinea pig testing different meds, but it is worth it to get the right combo
    One more, not everyone can do this but pets are great coping tools (companionship, responsibility, alarm clocks etc.)

  8. OCD

    I have OPINIONS about getting a diagnosis but my advice without getting on my soapbox…

    1. You know you best – you are the only one that truly knows your experience. If the diagnosis doesn’t feel right or you don’t understand why you were given it, ASK QUESTIONS. Ask for the criteria to be explained to you and how the provider feels your experience reflects that. It’s OK to ask for a second opinion. Differential Diagnosis is a thing for a reason.
    2. If you feel worse with treatment and/or don’t notice a change in any direction, ask for the treatment to be reevaluated and for alternative treatment. The answer to “These pills aren’t working” or “This therapy isn’t working” may not be stronger pills or more frequent therapy. It definitely could be, but it could also be that you are on the wrong pills, or in the wrong therapy.
    3. No matter what your diagnosis is, find a provider that will, above all else, listen to you and see you as an actual human being in front of them instead of whatever diagnosis you were given. The last thing you need is someone who will pathologize everything you say, think, and do.

    Getting a diagnosis is messy and complicated and we are taught that the doctor’s have the answers because they have the education and training. A lot of the time they do, but they are also human and make mistakes.

  9. Are you counting autism spectrum disorder? It’s not technically a mental illness, but lots of people think it is, and it’s comorbid with a lot of mental illnesses.

          1. I’ve been trying to think of three things today. I’m really sorry, but I think I’m still too close to my own diagnosis and haven’t fully come to terms with it myself, so I can’t do this. I’d be interested to read what other people suggest for it though.

  10. Diagnosis Schizo-affective Disorder Bipolar Type, BPD. The three things I would say to someone newly diagnosed with what I have would be: There are chemical issues and then there are character issues, You are worth it, Dont be naive to people.

  11. Johnzelle Anderson

    1) Be open-minded to the possibility that you may need to treat your illness in multiple ways. Don’t put all your eggs in one basket; for example, only doing medication and not trying therapy or vice versa.
    2) The diagnosis my be a lot to digest but this is the time to step up your self care game. Some of my favorites are massage therapy, books, writing, podcasting, and having a hobby instagram account.
    3) Not everyone is safe. You don’t need to explain your struggles to anyone who may weaponize it. Find your safe people and place boundaries with those who may magnify your distress.
    *Ashley you can link to my panoramic counseling blog 😊

  12. 1) understand you are in control of what to discuss in therapy
    2) do the ‘homework’ between therapy sessions
    3) being open and honest in sessions can be scary, but in the long run beneficial

  13. For PTSD, one thing that took me a while to understand was that just because you don’t have a specific trauma, it can trigger a response in your brain in the same ways.
    For instance, it’s common for veterans to have a trauma response to fireworks because of the noise.
    I am not a vet, but have the same trauma response to fireworks and sudden loud noises.
    You’re brain responds in similar ways to trauma, and even if you think there’s absolutely “no reason” to have a trauma response to something, your brain still does respond to it.

    Also, with addiction. And I’m still wrapping my head around these.
    1. You can’t get sober for anyone else. It has to be for you. And you HAVE to be ready. If you’re not really ready, it won’t stick.
    2. You very likely WILL fail. Nearly everyone does. But that doesn’t make you a failure. It takes the majority of people multiple attempts to get sober.
    3. You can’t do it alone. You have to do if for you, but you CAN’T do it alone. You need support. And that’s okay.

  14. Such a great idea! I can’t think of anything right now, but will get back to it when I don’t feel like I’m so drowsy. Hey, maybe drowsiness from meds can be #1 😀

  15. I have been diagnosed with dysthymia and AVPD (avoidant personality disorder), both in 2018 and both after a lot of upheavals, searching for the right answer and trying to make sense of things, on my as well as my then-therapist’s end.
    To people who are newly diagnosed with dysthymia, I’d say:
    1. The fact that your condition may often be referred to as high-functioning or milder depression, which is often just a way of explaining it shortly rather than a definition of what it actually is, doesn’t mean you have less of a problem than someone with for example major depression or bipolar does. Your struggle is simply different than theirs. You may not actively thinkk about suicide most of the time or you may not struggle to get out of bed every single day, but you may still have for example constant passive suicidal thoughts, or feel no pleasure out of things, or your energy levels may be low, even to the point where it could be disabling like major depression or even a physical illness could be. THe fact that it’s sometimes labelled high-functioning doesn’t mean that you are expected to be higher-functioning in all areas than a person with a different type of depression would. You may be able to do all you’re expected to do in life – go to work, raise children, prepare meals etc. – but struggle with social interactions and expressing any positive emotions, or engage in closer relationships, or do anything in life just for the fun of it, because of all the clouds hanging over you. Or vice versa. And even if you are able to do all these things, it doesn’t mean that this high functioning doesn’t cost you a lot. And sometimes despite having this so-called high-functioning depression, there will be days, or longer periods, where you may not be high-functioning at all, and indeed struggle to even get out of bed or take care of your basic needs. That’s shitty, but it’s okay, it happens. At least in my personal experience, dysthymia is not something fixed, it can change over time and respond to all sorts of things going on in my life or in my brain, or it can just change randomly. So don’t put pressure on yourself that you should be able to do certain things, or feel a certain way, because you have the “milder” depression. Overall it may indeed be milder than some other forms of depression, but it sticks to your brains like glue for years, sometimes for life, so in a way it may take even more of a toll on you, and your symptoms may fluctuate and change a lot over time.
    2. Don’t believe that you’re doomed to being unhappy your whole life because you have dysthymia. Maybe you have never felt happiness or not much, maybe you’ve even thought that it’s just part of your personality or something, which seems to be common when one has dysthymia, but this doesn’t have to be the case for the rest of your life, if you get the right treatment or therapy, or even if you just try to understand yourself better and work with your brain and remove yourself from situations or circumstances that worsen your mental health if possible, depending on what’s necessary for your current needs. Trust me, unhappiness doesn’t have to be the default state with this illness. Perhaps you might not be able to feel very noticeably happy all the time either, but it’s possible to enjoy life and various aspects of it with dysthymia, to feel pleasure and even strong positive emotions, and for your baseline to go up a bit, even if your baseline will still be lower than an average person’s.
    3. If you haven’t found it yet, try to find something that will drive you in life and work like your emotional/mental fuel. It can be a hobby, an interest, a pleasurable activity, your faith, your children, your pet, your job, even a TV programme that you like and always look forward to, anything that gives your life a purpose and keeps you going and fills your life with some positive and pleasant feelings and experiences and that motivates you. It doesn’t have to be anythhing huge at all.
    To people who are newly diagnosed withh AVPD, I’d say:
    1. Even though it probably very much feels like this to you, you are NOT alone. Seriously, there are people going through very similar, maybe even some of the same things as you. The whole new diagnosis thing can feel huge and overwhelming, especially so when you suddenly hear “PERSONALITY DISORDER”, but there’s also another side to it. If such a diagnosis exists, there are also other people who deal with this shit. It may be difficult to find us, because, duh, we’re avoidant, and, I don’t know about you, but for me it feels very exposing when I tell people that I have it because it’s basically like saying out loud all the things I struggle with the most and all my weaknesses, so we may not always want to share our diagnosis, but we are here.
    2. Embrace your inner child. I’m sure you can hear your inner critic well every single day, but when was the last time you listened to your inner child? Or went along with what he/she wanted? If you don’t have much of a relationship with your inner child I would highly recommend you to revive it. ALlow yourself to be child-like and do things you weren’t able or allowed to do as a child, even if they’re crazy-looking things for an adult to do, as long as they’re not some unhealthy coping strategies and obviously don’t harm anyone or anything like that. If your inner child wants to climb a tree, soak in a bubble bath for three hours, or just curl up in bed with your old teddy bear and cry everything out, let him or her do that. I get this may be out of your comfort zone if you struggle a lot with how other people see you and think of you, but you don’t have to do this in front of anyone and you don’t have to rush it. It seems to me like so many people with AVPD have inner children who never got to truly be themselves, so what better time to allow them for that than now, when you’re an adult and can decide about yourself?
    3. If you don’t have a lot of people in your immediate surroundings that you feel more or less comfortable talking with, I would advise you to find a penfriend. People say online interactions aren’t the same as offline, and perhaps it’s true, but even so it’s always something, and for many of us even talking to people online is already stepping outside of our comfort zone. Penpalling is something I’ve been doing for years and I think it’s a really good way to keep one’s peopling skills from going totally rusty while living a hermit or semi-hermit lifestyle. Given that our peopling skills are in vast majority of cases lacking to begin with, it’s important to preserve what’s still left. And in the meantime you can learn a lot of interesting things about other people.

  16. Diagnosed with Autism ADHD, Chronic depression and some things that I’m seeking help for now that are still without diagnosis…
    Many things have already been mentioned by the people that commented before me… But the most important thing, for me, was also the hardest thing: learn to accept that your old life is a chapter you’ve closed upon and a new chapter is ready to be written! You may feel helpless and alone, but once you’re truly ready, you’ll reach out and help may be provided. If the first help you get isn’t giving you a good feeling, don’t be afraid (I know, this is hard to do!) to ask for other options of help. Many things may help many people, but it doesn’t automatically mean it’s all ready and good to help you as well.
    It’s not really three things, more my experience. I also struggle with physical health ailments that sometimes make my mental ones more challenging.

    And no, I don’t see my autism as a mental health illness! It is a mental health matter though, in my opinion, and I figured there may be more people struggling with this as well.

    I hope this helps you a bit! 🤗

    1. Thanks for sharing! That journey to acceptance can be a difficult one, but it makes a big difference. I hope you’re able to get the cyclothymia diagnosis to better reflect what’s going on with your mental health.

      1. You’re very welcome! I hope it helps your new part of your blog. 😊
        Yes I hope to get more diagnoses, not because I love the labels but because then, I am insured for the help to overcome whatever they may be!
        I wonder if they’ll ever change that chronic depression to Cyclothymia though… That would mean I’d be eligible for more specialized help (meaning costing more), so they are not “handing” those diagnoses out… Even when they admit it’s a less severe Bipolar 😔 so weird! But yeah, medical word evolves around the wallet… 😔

        1. So short-sighted that the people in charge of funding don’t realize that actually getting people proper treatment is likely to cost less in the long run than leaving them to flail about under-treated.

          1. Yes it truly is… But it seems to be the way our mental health system “works”. We may all have (very expensive) insurance, and we may be covered for even more expensive things, but with mental health, it’s a sore battle.
            But also for other health issues…
            If I get a BMI over 40 they will help me any way they can to lose weight. I’ll be eligible for so much help. But when my BMI was 37 and I wanted help, I was all on my own, could not claim any insurance help 😔 they rather wipe you up than prevent you from drowning or so it seems. Very sad indeed.

          1. I’ve been diagnosed with depression and anxiety since about age 30, 27 years ago.
            1. Routine is a great foundation, regular meals and sleep. If these get off kilter, you’re not in your strongest position from which to handle your mental health diagnosis and treatment.
            2. Find professionals you trust, psychiatric, therapeutic, counselor, etc. Do not waste your time or your energy w/someone you don’t feel good about just because you don’t want to deal with finding another provider. Worth the trouble.
            3. Alcohol really does not help. It interacts with medications and exacerbates your illness. Took me 25 years to get this even though I knew it. Adding alcohol makes a tough road much steeper. This is a journey.

            Great support here. Breathe.

            1. Feel free to link to my blog on your webpage. This is such a great idea, Ashley! After you get where you want to be with it, we gotta spread it far and wide. I would’ve really appreciated such a resource way back when.

          2. I just wrote my response but fear it may have been lost in the ether. If you haven’t received another response (before this) on this thread, let me know. Not long so not a big deal to rewrite.

  17. Ashley, your voice sounds as though it’s moved from “fucking fuck” to maybe “yeah, fuck.” I’m sure seeing your fur family fed your soul. Kudos to brother, and niece!, for being there and mom showing up. You do the things that feed your soul, not those that add stress. Time for concentrated self-care, a personal retreat if you will, which just happens to be taking place on a psych ward. Even on day one, ER hell, you advocated for yourself. That, my friend, is strength.

    I would never have guessed you speak in a soft voice because, to me, your voice through your writing is assertive, clear, and moderately toned. Very interesting. Keep breathing.

  18. I would want people to know that they are not alone. I have had severe ocd since I was a kid back in the 80’s. Ocd wasn’t talked about then. I kept my ocd a secret for many many years. I felt so alone as a teenager going through this unknown illness. I don’t want anyone to feel alone when finding out about their mental health.

  19. Ashley, this is such a wonderful idea and i applaud you for thinking of it. thank you for raising and welcoming awareness on mental health. thank you.

  20. Hi Ashley,

    I was diagnosed with BPD at the age of 15. Then when I was in my twenties PTSD, and major depression was added.
    I guess that the first thing I would want to get is a full simple explanation of my disorder, I would want to know the truth, and mostly that I am not alone. That someone truly understands how I feel.
    I know I felt alone for a long time and I think that was the worst feeling. Having family try to arm-chair-psychologist me was awful too. Even now at 57 years old I still get the feeling of being unheard and alone.

  21. I have been diagnosed with bipolar illness and have been managing those symptoms since 1984/85. I would tell a newly diagnosed person that 1) the stigma you may encounter for having a mental illness is likely going to be half the battle; 2) Whenever possible find a good way to ensure you have the health insurance that you need. This may mean working at a job you otherwise would not prioritize or may mean getting on a family member’s plan or may mean getting care through a national healthcare program. 3) I believe there is a rock bottom to mental illness as there is with addiction. My sense of things is that a person may not get better until having hit what rock bottom is for them.

  22. Talking about arm-chair psychology, my Mom for the first half to two thirds of my life was always questioning what topics I was covering in therapy. She wanted to know what when where why who and how. I did not react to this well and it made things between us more difficult, About the time I became pregnant or shortly after the birth of my daughter my Mom was introduced to NAMI (Natl Alliance on Mental Illness). She took a several week course through NAMI called Family and Friends or something like that. My Mom is a very bookish person so studying about the problem, taking notes and internalizing the lessons were a natural fit for her. After she took that course at NAMI, it was like 100% turnaround. Or it felt like it…. She no longer asked about my therapy topics or progresses or lack there of. She got much much better at listening and also much much better at just giving support without having to be the problem solver. I credit NAMI for this stark reversal. It really and truly helped our relationship a lot. I think it also helped her let go of some of the blame she later admitted that she sometimes felt as playing a part in my diagnosis which came out of nowhere in our family…..

  23. PTSD from childhood abuse:
    1. Read the book _It wasn’t your fault_ by Beverly Engel
    2. Being present can be a challenge but is essential to surviving flashbacks. Learn something(s) for mindfulness, like meditation, breathing, using senses
    3. Coping skills are essential so get a manual like DBT by Linehan for distress tolerance

    DID: 1. do not do EMDR either until you can be present on-demand or ever
    2. Find DID expert therapist if possible. Ross Institute at UBH Denton (Texas, USA) has in-patient and PHP programs with expertly DID-trained staff
    3. The little (young) people inside you may have different needs and feelings than the bigger people. Learn internal communication (we still are learning).

  24. I think you came up with a really interesting and great idea.

    I’ve been thinking about it myself in terms of my ADHD and figured for someone newly diagnosed:

    1. The meds don’t do what you think they do. It doesn’t mean you can concentrate, it means you’re given the choice to do so. You can still get distracted and do dumb stuff because ADHD was never restricted to only a short attention span.

    2. This goes in general for what seems to be a lot of mental disorders, but it’s more so about knowing yourself and being smart about what you do with it before doing more of something you think is good for you. For example,
    Forgetting a bunch of stuff each day when you go out?
    Get a box and put all your outgoing items in it and near the door, make the box brighter than its surroundings so it’s hard to miss.

    1. Great tips. I also find myself paying attention to what my deficits are so that I can take steps to compensate, like what you mentioned about putting stuff in front of the door so it’s hard to miss. I think my level of functioning would be quite a bit lower if I didn’t put the effort into knowing myself.

  25. I have a diagnosis of bipolar affective disorder type 1. A few things I’d share with the newly diagnosed are:

    1. You are NOT your illness! There’s way more to you than that.

    2. Don’t stop medications cold turkey, especially if you’ve been on them for a while. If you really despise a medication, you tell your doctor that and ask to be weaned off and/or slowly switched to another medication.

    3. Don’t drink too much alcohol or take illegal drugs with bipolar medications. It can be dangerous and it makes judging medication efficacy difficult.

  26. I suffer from bi-polar: My three things. 1. You are not your mental health you are a human being first, 2 Self- care and resting if you need to is okay. 3. Reach out to others who suffer as well. For me talking helps.

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