Newly diagnosed…kind of annoyed it took this long!

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This topic contains 8 replies, has 7 voices, and was last updated by  mommy0f3ADD 1 week, 4 days ago.

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  • #107877

    oodna
    Participant

    I would love to hear from women who had a similar experience or who have advice/perspectives on how it gets better from here.

    At age 27 I was told by a psychiatrist that I had ADD symptoms, but that I was “too high functioning” to be diagnosed. Until that time I had never considered the possibility. I always knew that I was a bit intense and I believed that I was an unreliable, lazy person.

    Since her comments I spent time reflecting on the idea that I had ADD and was in fact not so high functioning after all. I had struggled terribly at university, and always felt that I was falling short of my potential. So with this in mind I decided that I would seek a diagnosis if I ever enrolled in postgraduate study.

    Last year I enrolled in postgrad and went to see my GP. She referred me to a psychiatrist and I was diagnosed (age 32) and started taking medication.

    Since then everything has fallen into place. So many things about me and that I have struggled with were the ADD all along and it took this long to find out. I am still grieving to a certain extent for the loss of what my life could have been like if I had been diagnosed earlier. I’m also rebuilding my sense of self without the feelings of failure and inadequacy that I learned as a child.

    I am incredibly grateful to have a starting point now, and I have seen improvements in my life that were previously unthinkable, far beyond studying better. My reliance on alcohol miraculously ended, I can manage my household without investing grueling hours for no noticeable change, I’m no longer so fatigued by 3pm that I find excuses to leave work early, and I am much much happier.

    But seriously…I’m kind of annoyed it took so long!

  • #107878

    Inak
    Participant

    Your post gives me hope, I was referred to adhd/ asd specialist last year and am on a long waiting list, I seriously hope the meds kick in and I can start my life. I have had problems since I was a child, the hormonal changes during adolescence really kick started things, I am now 40, itโ€™s taken all these years!

    • This reply was modified 2 months, 3 weeks ago by  Inak.
    • This reply was modified 2 months, 3 weeks ago by  Inak.
  • #107883

    Spaceboy 99
    Participant

    Hey there ๐Ÿ™‚

    I’m not a woman, so I hope you don’t mind me sticking my oar in, but if you do, please feel free to ignore my post ๐Ÿ™‚

    Congratulations on your (belated) diagnosis! I can sympathise with your anger. Being told I was too high functioning was actually my biggest fear when I went for diagnosis, since, you know, I can hold down a job and relationship, and I have no drug or gambling problems, nor a criminal record. Sadly, your experience is really common amongst a lot of adults with as-yet undiagnosed ADHD, because there’s so much misinformation around about it.

    Anger is also a common reaction to either being misdiagnosed, badly informed, or simply not noticed when you were younger. I’m really sorry you’ve had such a hard time. I’m glad things are picking up, though, and I wish you the very best in future ๐Ÿ™‚

  • #107898

    Adhdstu
    Participant

    Hi,

    I know how you feel. I was just diagnosed and I’m in my thirties. I am scheduled for my first meeting with the psych. or med. management and hope it all goes well but already mad and sad at the thought that my life could have been better if I had been diagnosed sooner. My kindergarten teacher (with my parents consent) had me evaluated by the psych. for my school district but he didnt think I had it. Unfortunately I am very inattentive and hyperactive but when he gave me his assessment he took me to the library in my school away from the classroom and I probably didnt display many symptoms since it was just answering his questions one on one. I tend to be fine with that sort of thing. Not sure if he also observed me in the classroom too but dang something was missed! And how could I or my family or someone I knew not push me to get reassessed until now?! Finally my wife and I knew I had to go get seen this year.

  • #107936

    oodna
    Participant

    Hi all, thank you so much for sharing your experiences, it was a treat to wake up and read them!

    Inak – I’m sorry that you have to wait so long to get assessed. While I was waiting I spent some time researching other things that can help (I have clocks everywhere now!), small things can be a good starting point. For me the medication worked almost instantly once I got to the correct dose – hopefully you will have a similar experience.

    And yes, of course men are welcome to comment – I had read so much about women being underdiagnosed that I expected more women to identify with my story. Obviously it’s not an exclusively female problem so I apologise if anyone felt excluded ๐Ÿ™‚

    The misinformation about ADD/ADHD is very frustrating. My stronger symptoms are inattentive, so I think in the 90s it just wasn’t on the radar. The “high functioning” idea is so frustrating to me – it completely fails to appreciate the individual.

    Most of my closer friends as well as my boss (so grateful) have been supportive and happy for me. But others seem to feel like I’m just trying to get special treatment or magic pills or something. They hear, “I’m tired, I can’t prioritise, I can’t concentrate” and they say, “Oh, everyone feels that way, that’s normal. Theres nothing wrong with you”.

    With that said, I’ve decided to be very open about my diagnosis and how it has affected me. I realise that this isn’t something everyone wants to or should do, but I hope that it can have a positive effect for someone listening.

    I have found this website and the podcast very helpful. And my sister works with ASD students in a university setting and she’s been amazing and pointing out that neurodiversity comes with both strengths and challenges. Her perspective has been so refreshing.

  • #112031

    shine2019
    Participant

    you’re not alone with this! I started medication literally 2 weeks ago and am still in the phase of researching complementary natural remedies…. I’m 32. When starting the process for diagnosis I went through unbelievable depression. How much I had “wasted,” how late in life I am starting to learn to work with my brain instead of against it. All the time I couldn’t figure out “what was wrong with me” and felt like I could be so much more but couldn’t figure out how. It’s devastating. And you’re right – SO much anger. I was diagnosed as a child, but then a different doctor disagreed and my treatment ended., diagnosis forgotten. I literally had the key to living differently in my (well, someone’s) hands, and truly did not live as I should have been for my whole life.

    It’s very inspiring to hear that you went through the same emotions and are now feeling some positives in it. I’m so glad the benefits started to show themselves to you and hope they continue! I am not usually a very social person, but I’m feeling a bit alone in this so if you’re willing, I would love to hear some more updates on your process of rebuilding the way you think about yourself, getting through the grieving process, how you’ve coped with bad days and moved on, etc.

    And beating alcohol addiction… wow, that shows incredible strength and change. Congratulations, seriously.

    • #113025

      oodna
      Participant

      Hi Shine

      Thank you for your response, it was great to read. I was also devastated to see that you had your diagnosis reversed at such a critical time, I’m sorry that you went through that.

      I’m working on the emotional stuff with a brilliant psych, and constantly learning to trust myself more and seeing patterns in my life that relate directly back to my ADHD. Disengaging from the belief that I’m a lazy person and my general low self-esteem is going to take work. I have a deep sense of sadness which I need to acknowledge and work through. But I also have goals now which I can plan towards without going into full melt down!

      It’s going to take a long time to get over the feeling of wasted time and missed opportunities. Part of that has to be recognising that at our age we still have plenty of time even if it doesn’t feel like it. The ADHD has affected so many parts of my life, and I’m seeing gradual improvements all the time, especially at work and with study. My medication is making a big difference with very few side-effects, so I am incredibly grateful for how smooth that part of the transition was for me.

      I’ve also been feeling alone in this. Probably the most frustrating thing lately is how even my close friends respond when I talk about my ADHD. It’s like they don’t believe in it, or they think I’m seeking special treatment (especially frustrating when I want to celebrate my new discoveries with them). I’ve had so many people say “oh that’s not an ADHD thing, I lose things too” etc. It feels horrible to have these reactions from people I thought would be happy for me. I almost feel compelled to keep a Drs note on me to produce at times like this! I would love to hear your perspective on this.

  • #113381

    Deb from Philly
    Participant

    It’s wonderful to find this today! Strange as it may sound, it’s so helpful and “warming” to read all of your stories. I have also felt alone since I was diagnosed, 3 months ago, although at first I was really happy with the diagnosis, and still am with hopes of finding good and the correct treatment. It’s just so hard to feel connected with the way loved ones react; like you said, oodna. I’m still happy to know, because it explains EVERYTHING in my life, FINALLY ๐Ÿ™‚ !!!

    I was diagnosed in January of this year. I’m 46. Does that make anyone else feel grateful for being diagnosed in your 30s? LOL! Just kidding and no contempt or judgement here!! I love all you guys already!!!! I am a little jealous though. ๐Ÿ˜‰

    It was suggested when I was a kid that I had ADHD, and looking back it seems so obvious. When I was 18 (in 1990), I got tested for all learning disabilities, and a Psychiatrist wrote a letter attached to it saying it seemed that I had “Attention Deficit Disorder. At this time there is no test for Attention Deficit Disorder.” It also said that I had an unusual learning disability possibly caused by ADD, and sensory issues that don’t meet any diangosis. I had this done (my parents had this done for me/lucky me and thank God for them/So blessed to have them until death/mom is still alive) because I was having trouble finishing tests and quizzes, and needed an “extended time” accommodation.

    When I was 22 I started having panic attacks (right after my dad died). My PCP gave me Klonipin for emergencies for many years. By age 28 (1999) I had a masters in social work, and was working solely in public schools with special ed kids with mental health problems. This is when I decided to pull the trigger over the stigma I had in my own mind, of seeing a psychiatrist. I went to one that came highly recommended by one of my coworkers, in a mental health position, and much more experience.

    Here is my anger ladies and gents:
    (Comment: this anger is possibly part of the grieving process of the life I’ve had to live (panic ridden) without treatment or even knowing?)
    (again: age 28, in 2009) In my first appointment (diagnostic) with this first psychiatrist I had ever seen, I told him I had ADHD as a child and was having panic attacks since age 22. He said, “You can’t have ADHD and anxiety, so since you are having panic attacks, lets assume that you were misdiagnosed with ADHD and it was really anxiety all along.”

    So from then until January 9, 2019, I’ve been treated ONLY for Panic Disorder….all this time…and nothing else. And all of the therapists and psychiatrists that I went to who never saw it??…And all of my coworkers who were in the mental health field??? Yes! Anger!!! I’m mad at myself for trusting that doc so much that I never looked for a reevaluation.

    So, now I’m a title processor in Texas (moved in 2013, to marry my late high school/early college sweetheart).

    I was in Philly with my bad ass career prior to living here. I was very adhd and panicky (but medicated for the panic attacks) back in Philly too, but working with groups of kids with high levels of severe and crisis behaviors, I was able to hyperfocus, and excelled in my work with the kids. People were always amazed at how the kids responded to me, how I never seemed to get tired, how good I was in extreme emergencies with the kids, and how I never lost my patience with those kiddos.

    Moved to TX in 2013 and haven’t been able to land a job of any sort without knowing someone. Hence-I now process automobile titles for totaled vehicles. And I haven’t even mentioned how many car accidents I’ve been the cause of! OMG! Sometimes 1 per year, sometimes more. I’m so lucky to be alive!!!!

    My panic disorder psychiatrist was the one who agreed with me after I asked him if it was possible to have ADHD at the same time as panic disorder. He put me on vyvanse 70 mg caps the first month and told me to start working up to a whole capsule by mixing in water and drinking 1/2 for a few days and then drinking a little more, until up to 70mg.

    It was a SERIOUS MIRACLE when I first started taking it…60 mg it worked well…and the doc pushed me up to 70 and once I got used to it, it worked. It completely stopped my panic attacks dead in their tracks!!! I never knew that I told myself horrible things like a spinning top/spinning loop of abusive self-talk. I was shocked and sad for my poor beat-up-self. I got up to dose and I heard the loop of hatred and I stopped it immediately.

    I believe I developed this self-abuse loop in my head as a coping mechanism/skill(?) ages ago, to help me get through school. If you beat yourself up enough you will become anxious enough to focus on just about anything. How messed up is that??? I also never heard the loop, even through therapy, yoga, meditation, until Vyvanse.

    On Vyvanse I was able to just think, “if ‘that thing that just happened’ had happened before vyvanse I would have freaked out and said x, y and z to myself over and over causing a panic attack.” “I don’t feel any of those things right now. How amazing and awesome is this!!” “I don’t need that anxiety now to get me to do what I need to do/pay attention to the things that are hard but unavoidable. I can do it without anxiety now.” When I drive while on my meds, I think, “How cool is this!! Driving isn’t scary anymore!”

    Unfortunately, Vyvanse hasn’t been working as well recently and a couple of times my loop has come back and I have had panic attacks. I’m also getting my impulsivity back in conversations (interrupting, changing topics), and zoning out at work again without noticing. Also, Vyvanse has never lasted long enough to be in my system while driving both directions to and from home (work and where ever else I need or want to go), and I’m concerned about my life now that I know that us ADDers are way more likely to die in a car accident than non-ADDers. I saw my panic attack doc last week and he said he wasn’t willing to change my meds. And that was that. WHAT!!!????

    So now I’m on a quest to find a psychiatrist that knows what the heck he/she is doing with adult adhd….hopefully knowing female aspects of it too regarding related estrogen levels. I have an appt with a top notch psychiatrist on May 7th. He doesn’t take insurance and charges $300 for the initial and $150 for all of the following visits. My insurance will get some of it, but it’s still going to be hard to pay for. I don’t feel like I have a choice. I refuse to go back to the way I was living! I’m just praying the vyvance will keep me going till then…but I know it won’t. I had some birth control pills lying around (have mirena IUD now), and started to take them a few days ago. I think they are helping. Crazy! Thank God I have this appointment scheduled or I don’t know how I’d feel right now or what I would do. How panicked would I be?

    Anyway, I’m very glad to be here with all of you!! So good to have found this forum!! Is this the correct place to just continue to support each other or is there a different thread for that?? I know all of you have lots of stories of your own and traumas or mini-traumas that you have experienced that you would like to get off of your chest. Lots of questions too. I’d love to hear about them, learn from y’all and support y’all!!! This is my first time on the ADDitude formus ever…so I haven’t scoped the format out yet. Any moderators that can give quick advice on this?

    Best wishes of peace and joy in your lives, to all of you!
    -Deb ๐Ÿ™‚

  • #113868

    mommy0f3ADD
    Participant

    I concur. Iโ€™m 33 years old and have been treated for depression and anxiety my entire life. Looking back at all of my experiences and emotions it was all related to my disorganization, easily distracted, impulsive decision making, always struggled in school and never had any friends, fell victim to bullying g even in past relationships. What prompted me to get tested was the fact that I struggle to parent my 6 year old who also has ADD. Iโ€™m sad that who I shared my diagnosis have said, โ€œyou never looked like you had add, maybe you should get a second opinion.โ€ Wish there could be more
    add/adhd awareness so thereโ€™s less judgement and more acceptance. Thank you for sharing your new diagnosis. Iโ€™m relieved to hear Iโ€™m not alone in this struggle.

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