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    New Diagnosis

    29.08.2019 (a message sent to a friend):
    “I think I suffer from BPD

    16.05.2022 (said by a doctor in person*):
    “I’m diagnosing you with Emotionally Unstable Personality Disorder. Do you know what that is?”

    ———————————
    * = I cannot remember the exact words, but this was the gist of it

    BPD is called EUPD here in the UK. I was told this a few months ago when I first started the fight for a diagnosis. I didn’t realise how long I suspected it until the other week, when I found the original message expressing my concern to my best friend.

    I didn’t get the opportunity to suggest it to my doctor until I moved away from home. And after that, I had to gain the strength to ask about it. A diagnosis is final. I can’t think it’s something else when I get diagnosed. But, saying “I might have BPD” to explain my difficulties gets tiring. I wanted the certainty, not living under a self-diagnosis.

    I have no issues with self-dx, especially since it’s what I had to go by for almost 3 years. However, being self-dx meant that it was just that. There was no certainty, I couldn’t argue if someone said “are you sure?” (thankfully no-one did), I couldn’t get help related to it. And I ultimately just felt uncomfortable.

    //

    I wasn’t expecting a diagnosis today. Last time I mentioned it, the doctor didn’t seem keen, saying it could be bipolar disorder instead, among other potentials. Today was just supposed to be an appointment that messed around with my medication and looked at previous contact with the mental health services.

    But I twigged about halfway into the appointment. When she started asking the questions. I met the 5 criteria she mentioned, and she didn’t have to mention any others. Even when I said one was probably a trauma response. I guess it was both.

    It didn’t make it any less surreal when she said the words though. After 3 years to be told that yes my suspicions were right.

    I’m not sure how a diagnosis will change things in terms of help. I thought maybe I would be able to be put on medication to perhaps regulate my mood, but apparently medication isn’t very effective. And I was already put on the waiting list of DBT. I guess we’ll wait and see.

    #BorderlinePersonalityDisorder #BPD #EUPD #Diagnosis #SelfDiagnosis #DBT

    7 people are talking about this
    Community Voices

    Good days

    Good morning everyone. I am feeling grateful today. After 18 years of praying, my husband and I are getting in the same page. We BOTH had trust issues as a result of previous traumatic relationships that left each one of use utilizing different defense mechanisms to cope (my husband withdrew and I needed more attention).

    Staring at the eyes of a possible divorce, we finally realized that we were seriously out if sinc and decided to ask for help. It is not immediately perfect, but is certainly going in the right direction.

    We are on a small vacation now at Sight and Sound in Pennsylvania. The play centered about the story of King David… it was eye-opening. The storyline encompasses how God worked with David with love, correction and mercy throughout his life, which finally set him free. The gist of it WAS PERFECT for our situation.

    We will continue praying and working on our marriage as the biblical book of Jeremiah teaches and having faith!
    #GodisGood #Depression #PTSD #Faith

    Community Voices

    I'm new here!

    Hi, my name is EverythingJarrett (feel free to just call me Jarrett). I’m new to The Mighty and look forward to learning from other's experiences, and gain understanding from other's perspectives. I'm very science oriented, open-minded, and unless you can scientifically PROVE something DOESN'T exist, doesn't work, "it's a negative", can't happen, or isn't true, I'm inclined to be open to the possibility in the POSITIVE. (Can anyone PROVE there are no Aliens from outer space? Then I'm inclined to believe it's quite possible they exist, though I've got no "evidence" or proof they do!) .... On a personal note, I would love to know more about your journey, your struggles, and the "wiggles" you've created/devised with success, for whatever it is that complicates your life and causes you trouble. What are your wiggles?

    #MightyTogether

    #Crohn 'sDisease

    #Depression

    #Fibromyalgia

    #RheumatoidArthritis

    #PTSD #GIST #Stroke

    1 person is talking about this
    Sky Taylor

    Do I Still Deserve Help for My Mental Health If I Can Work?

    Yes, I hold a full-time job. Yes, I graduated college. Yes, I pay my bills. Yes, I have good friends and support. But yes, I also have depression . And yes, I think about suicide every single day. I have for years. No, you can’t see any scars, but yes, I have them. There’s a reason I wear long sleeves. I’ve been “managing” my depression and suicidal thoughts for over a decade now. I’m in therapy, I’m on medication — “doing the work,” or whatever you want to call it. But I haven’t been OK in a long time. I’ve always respected the heck out of people who take time away from work or school to focus on their mental health or receive treatment. When I talk to people who are able to make that decision for themselves, my first thought is, “Wow. That’s amazing! Power to you, I’m so proud of you.” And my second thought is, “I could never do that.” Not because I think I’m “better” than them, God no. It’s not that I don’t need a break or need more intensive treatment — I don’t think it’s “normal” to think about killing yourself to the extent I do every day. I don’t think going days without washing my hair or changing my clothes is healthy by any means. It’s probably not a great sign I’m isolating more. Crying myself to sleep because all I want is to die isn’t ideal. But, I’m managing, right? The lines on my arm might beg to disagree… But how could I walk away from my job to put my mental health first? What about insurance? What about paying rent? What would I do about my parents? How can I just leave a job? What if it’s not waiting for me when I come back? What will people think? No one will ever look at me the same. What if I waste all this money on a program that ends up hurting me more than helping me? Wouldn’t be the first time. What if I’m overreacting and I’m actually fine? Who am I kidding, thinking I can take a few weeks off and do a partial hospitalization program (PHP)? I’ve been working this long while dealing with my depression , suicidal thoughts , post-traumatic stress disorder (PTSD), and an eating disorder . Isn’t that proof I don’t need this? Or don’t deserve this? OK, let’s pause and rewind a second, because no, these aren’t hypothetical questions. I hit a low on New Year’s that led me to ask a friend to take me to the hospital (that’s a story for another time). While I didn’t end up choosing to stay inpatient, the plan was to do a PHP or intensive outpatient program (IOP) after. I had reached my limit. There was no more coping. I couldn’t do it anymore. The thought of going back to work and continuing at the rate I was going was impossible to entertain. I was done. And if I had access to something I could have used to die, there’s a decent chance I would’ve taken it. But, let’s be real: This is the American health care system we’re talking about. I didn’t leave the hospital that day and start a program the next. It’s been almost three weeks trying to set this up, and it’ll be at least one more before I finally start the program. I’m grateful I have access to care at all, don’t get me wrong, but going three weeks after hitting a low like that waiting for treatment has been hard. And yet, I’ve been working. I talked to my HR department about taking time off to do the program, and the assumption was I would just work until then. I don’t think either of us thought it would be this long. Working the last few weeks has felt like absolute hell on top of everything else going on in my life right now, though. And while my boss knows the gist of the situation, he doesn’t seem to register the fact that between when I told him I was taking leave for more intensive medical treatment, to the time that treatment starts — I didn’t automatically get better. I’m not operating at 100% right now. And while everyone else in the company (who knows) has been understanding, it’s tough when the boss you work with every day doesn’t seem to be. (OK, my work rant is over, sorry.) The point is, though PHP is for people who are struggling to function and need more support, I’ve also been working. Does that mean I don’t need the treatment? Does it mean I don’t deserve to do it? Am I “crazy” for doing this? I’ve certainly felt it at times. But, I don’t think ability or inability to work is a great qualifier for needing support or not. I certainly wouldn’t ever question anyone else who decided they needed more intensive treatment but was working in-between. Because you never know what else is going on. Just because someone seems like they’re “high functioning” despite their mental illness , doesn’t mean they are. Functioning is incredibly subjective, and while our society may equate working to functioning, I call BS. Everyone deserves to receive the care they need. If you’re hurting, you’re hurting. That’s it. You don’t need to justify or explain it. You’re worthy of help simply because you’re human. And I write this just as much as a reminder to myself as I do to all of you. So, if you’re thinking about asking for help but feel unsure if what you’re experiencing is “bad enough,” take the step. I’m taking it right here with you.

    How to Use Pain Scales to Explain Pain (Even Though They All Suck)

    The fucking pain scale. If you’ve ever sought treatment for pain, you’ve heard this more than once. Ten means the worst pain you’ve ever experienced. Or else ten means the worst pain imaginable. Unless it means “bad enough to go to the ER.” Or just “very severe.”  My new favorite is “Unspeakable / unimaginable. Bedridden and possibly delirious.” That seems closest to the gist of it. There’s even a visual scale for kids with faces! The pain scale and its inescapable fuckery All those things are completely different, of course. I mean… go look at that sentence again and think about how far apart some of those are. I’ve never given birth, had a kidney stone, or had my arm cut off without anesthesia, but I can imagine how badly those would hurt. If I truly went by “the worst pain you’ve ever felt,” my entire scale would have changed after my L5-S1 disc herniated. Does that mean that what was my 7 was now a 5 because the scale was stretched? “There are lots of problems that come with trying to measure pain,” Professor Stephen McMahon of the London Pain Consortium told The Independent in 2018. “I think the obsession with numbers is an oversimplification. Pain is not unidimensional. It doesn’t just come with scale […] it comes with other baggage. How threatening it is, how emotionally disturbing, how it affects your ability to concentrate.” What does “the most pain you’ve ever been in” really mean? I’ve been thinking a lot about this since I saw a post by someone new to chronic pain who said that they couldn’t understand the arbitrary value of a 1-10 scale of pain. She elaborated in a comment: “Especially when they say ‘10 being the most pain you’ve ever been in’ because yes the pain that I’m in all the time is the most pain I’ve ever been in but I always doubt that it’s a 10.” My response was: “Your instincts are right, you should lowball it. Don’t ever say 10, because they will dismiss you. If you’re not literally on your back screaming in pain, or flat-out unconscious, it’s not a 10. I say that not to be mean, but because I have been through this. Your normal everyday ‘worst pain’ is an 8. At MOST. That’s how you get a doctor to take you seriously.” And don’t ever, ever, ever say it’s an 11. Unless you’re Spinal Tap. Turns Out Doctors Care About the Pain Scale Numbers, Not the Words Here’s what drives me up a wall: the doctors who make us do this don’t know or care about the technicalities. A 10 is a 10 is a 10, I’ve discovered, no matter what the “definition” happens to be. Unfortunately, as someone who lives by words and who is very literal-minded in some ways, that realization took me faaaaaar too long. The Pain Scale: Choosing the Best Version for You (Sorry, They All Suck) Some people like to write their own pain scales, and there are a whole bunch of other all-slightly-different scales that do one thing or another.  For instance, with the McGill Pain Index, created in 1975, doctors ask patients to select from among a list of sensory, affective, and evaluative descriptors for their pain, and assign a number describing their intensity. I’ve filled out this form so many damn times, even in my own medical journey over the last 20+ years (good lord, it’s really been that long, hasn’t it).  But it’s still a subjective measurement that’s treated as objective and forced onto a numerical scale that truly doesn’t describe the situation. Things I Wish I’d Known About the Pain Scale I wish someone had told me at the start that my affect was being judged and noted every time I came in (“affect” in this case means the visible reaction a person displays toward events, often described by such terms as constricted, normal range, appropriate to context, flat, or shallow). I wish I’d known that the numbers on the scale matter more than the definitions that go along with them: even if a poorly-worded definition traps you at a 6, if your pain feels more like 7 out of 10, you should go with 7. Describe Your Pain (Seriously, Actually Describe It) But honestly, it’s better to just get done with the number and move on to the actual description. And that’s the right word, too: don’t just say your pain is bad. Describe how it’s bad. Describe the effect it has on your day-to-day activities. Describe the actual pain as best you can: not just “it hurts” but “it burns, it stabs, it clenches.” My chronic pain started when I was 15. I wish, at the start, that I had the words to describe just how different my pain was at night than it was at 10 a.m. when I might have a doctor’s appointment. My affect at 10 a.m. and my affect at 10 p.m. are, well, like night and day. But just saying “it gets worse as the day goes on” doesn’t really communicate that. Turns out most pain gets worse as the day goes on, but not to the extent mine did, and it took time to figure out how to get that across. Pain Scales: An Imperfect, Objective Measurement of a Variable, Subjective Experience And that’s the crux of it: all these things are trying to objectively classify something that resists that categorization. There are so many types of pain, but even if you only have one (“only”), pain isn’t neat and tidy. So as you answer pain scale questions, keep the bigger picture in mind. Stress out less about the technical wording of the scale you’re using and more about how you’re going to get across the information you need to get across. Think of the pain scale as an intro to a conversation that might really be useful to both you and your doctor, rather than as the be-all-end-all. Or just scream “BEES!!!” and hope they get the joke.

    Community Voices

    What does it take to get well

    <p>What does it take to get well</p>
    12 people are talking about this
    Katie Sanford

    4 Tips for Disclosing a Schizoaffective Disorder Diagnosis

    If disclosing your schizoaffective disorder scares you, you are not alone. The stigma alone can make it feel unsafe to share your diagnosis, but in some cases, it can be better or even necessary to disclose. Here are a few tips on opening up about your schizoaffective disorder diagnosis. 1. Start disclosing with people you feel safe with. If possible, start by disclosing to people close to you who you think would be the most supportive, whether that’s friends, co-workers, or any other person with whom you feel comfortable. For me, it was two close friends. While I wasn’t convinced they would respond well and I would have been devastated had they not been supportive, they were two of the people who I felt most strongly connected with and who had been through other life trials with me, including mental health-related ones. They were some of the only people with whom I felt I could always be honest. 2. Think about what you want to say before disclosing. Don’t focus too much on the exact words you want to say because if you go off script, it may throw you off and trigger more anxiety. But think about what you want the other person to understand. Maybe you feel it’s important to say something to let them know you are still the same person. Or maybe you want to ask for specific help or support or explain any past or future issues. Be prepared to explain schizoaffective disorder to some degree. Most people aren’t familiar with it so giving the gist of it may help the other person have a better idea of what you are going through. If there are parts of your experience or this disorder you’re not ready to open up about, that’s OK. You don’t need to share everything, just what you need them to know. 3. Consider sharing some of your experiences with schizoaffective disorder. It is by no means your job to educate everyone you come into contact with unless you choose to do so, but sharing some of your experiences with someone you plan on disclosing your diagnosis with may help erase stigma and any stereotypes they have in their head. Most people don’t actually know much, if anything, about schizoaffective disorder. So, sharing real experiences can paint a more accurate picture, which might be different than what they thought schizoaffective disorder or psychosis entailed. When opening up to employers and teachers, I typically keep the information I share limited and quite simple, but when it came to disclosing my diagnosis to friends, giving some detail usually helped them better understand and support me and reminded them it was me, their friend, living with this rather than a picture painted by the media. 4. Choose a moment that’s private and in a place where you feel most comfortable. When I told my friends, I chose a moment where we were in one of their bedrooms. It was a place where we regularly had personal conversations. It helped me relax to be in what I considered a safe space. But not everyone you disclose to will be a friend. When it comes to sharing your diagnosis with teachers or employers, it’s often helpful to do so in a private setting where you have their full attention and at a point when both your mind and theirs are calm. And if you’ve set your plans on where and when, then the moment comes and it doesn’t feel right, it’s often OK to change your mind and try again later. But this conversation doesn’t necessarily have to be planned either — you may find yourself in an unexpected moment that just feels right. The truth is, it may never feel like the perfect moment to disclose that you have schizoaffective disorder. No matter where, when, or how you choose to do it, there’s a good chance disclosing your schizoaffective disorder diagnosis is going to feel awkward and uncomfortable. But take a deep breath. Say what feels right at that moment, whether it’s the full story or just highlights. Understand there are some who may not respond well. But if you do get a negative response, don’t give up on telling others. Just because one person isn’t supportive doesn’t mean no one will support you. I was absolutely terrified when I started sharing my diagnosis and there are still situations where I’m very nervous about sharing. But as frightening as it is, in some cases disclosure is necessary. You need people, especially locally, who are there for you, and you may need accommodations at work or school that require some level of disclosure to select individuals. No matter how scared you are, remember there are people out there who love you and support you no matter what. If those aren’t the people around you now, don’t give up — they’re out there. No matter who you are or what your symptoms are, you deserve support. You can follow Katie’s journey on her blog, Not Like the Others.

    Community Voices

    #oh no it’s back

    TRIGGER SUICIDAL: Hi everyone, I am so sorry I’m writing this as I haven’t written in sometime, because I’ve been well, that being said I am now in so much pain and really need support from those who get the illness. I was diagnosed 21 years ago with bipolar and most of those years have been more hard than good. It’s been a couple of weeks I haven’t felt well and foresee myself crashing, I think I already am. So I have all the symptoms of depression spiraling out of control. My suicidal thoughts are consuming my thought process. I can’t tell my husband as I don’t want to burden him, I know if I die that would be the worse for him. But it’s now about me as with the illness I have a tremendous mount of guilt. I don’t/refuse to go to hospital, been hospitalized many times and it’s no fun. I am so sick of this illness, I think I don’t have any more fight in me.. I could go on but I think you get the gist.. Thanks for reading and understanding

    24 people are talking about this
    Community Voices

    What to call my #ChronicPain issue?

    I have a chronic pain issue with my left arm. The gist of it is that my shoulder is very tight. That sends #nervepain down my hand. There isn’t really a diagnosis on it, but it’s a form of a #BrachialPlexusInjuries

    Anyway, I don’t know how to describe it. It’s not really an injury. That gives the implication that it was caused by one specific thing and that it’s temporary.

    But it’s not truly a #Disability . It slows me down. My typing is a little slower. It’s tough to grip something too long. I work out a lot and my left side is measurably worse than my right. But there’s nothing I can’t do because of it. So I feel like I can’t use the term disability to describe it. I also know people who know me would be floored if I called myself disabled by it because again I’m not. There’s nothing I can’t do.

    So what is it? It’s not even a fully diagnosed condition.

    5 people are talking about this
    Community Voices

    Paranoid!

    So besides all of the normal issues I deal with daily I am also dealing with severe paranoia lately. From opening up and sharing about my childhood and life before my diagnosis, into today where I am finally taking the steps to learning more about my diseases and how to control it in a much healthier way.

    This comes with the return of all the nightmares, flashbacks, fear of sounds, hearing voices of either men or women. Either directed toward me or my husband. A lot of insecurities overall surrounding me. I know that delusions occur but how to I come back to reality? I fear abandonment so much that I swear everyone is plotting to get up and leave me. Start better healthier, fulfilling lives without me.

    I think my husband is going to run off with anyone else because I am exhausting to deal with and to understand. I cant even understand myself, how can I expect him to understand me. I dont share because I dont want to be labelled, yet not venting, talking and getting it out feels like I am driving myself to a worse place.

    I dont want to be known as "crazy" I know I am different and I have to live different, I have to deal with situations and life in different ways then others and without understanding and support how do I do it alone?

    My family unintentionally blame my diseases for just about everything. "oh its ok I know you see things in a weird way sometimes." of course I can not remember exact words at the moment (completely drawing a blank but you get the gist), either way I feel attacked or the reason everyone has to use when things go wrong and it hurts. I dont want to always feel lkike things that go wrong are me because I dont get the credit for all the things that go right. So how can one person as little as me be responsible for all the negative? I just dont want to be the scape goat anymore.