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The Long Road to Diagnosis

How many here wrestled for years, maybe decades, before getting a diagnosis that helped?

I was 22 when I got married to the most wonderful person I'll ever know. I'm 49 now, and we separated 6 months ago. For the vast majority of that time, to friends, family, and my dear partner and child, I was simply "the grumpy one." I would get annoyed at the slightest things, and let the huge problems of the world overwhelm me and influence my behaviour for days, weeks, months. When I would ask my doctor, whom I'd been seeing since I was 11, he'd tell me that I "just need to relax."


About a decade ago, I went on an antidepressant because we thought maybe that was the problem. And, as with many meds, it helped for a little while, or it mitigated enough of the symptoms that I thought maybe I'd found a fix.

A few years later, as things were getting worse and I was being very verbally abusive to my spouse and child, I had it suggested to me that I should look into ADHD. Which I did, and was medicated for without any kind of diagnosis. I was over-medicated and I ended up in the hospital, beaten and restrained by security and police.

I was diagnosed with BPD, the first diagnosis in my life that has made any sense of the chaos, 5 months ago, after my separation and a suicide attempt, well after I'd done what looks like irreparable damage to the vast majority of the important relationships in my life.

I am nearly 50 now and finally have a set of tools that put the disparate parts of my life in some kind of order. I despair that I didn't have them decades ago, that I wasn't handed this little cheat sheet so that I could avoid the damage I've caused both to others and myself. I despair that the time left to me is not going to be enough to fix what I've damaged or to build something new.

I took me so long to get here, so long to figure out how to be a human being in my own inimitable fashion. I just want to be able to share the real me, the one not overwhelmed by the monster, with the people I love, without them fearing me.

#BorderlinePersonalityDisorder #BPD #Diagnosis

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The Double-Edged Sword of Diagnosis

It's tough, right? You don't want to be told that there's something going wrong in your brain or your body, but when you find out, things just kind of click into place.

A diagnosis can be crushing. When I discovered BPD, and then was diagnosed, there was something of the feeling of a death sentence. The prognosis, from the look of extant writing, is not great. The treatment is ridiculously expensive. We are destined to be alone with the weight of feelings we can't even begin to describe. I'm a trained writer and I still can't.

But diagnosis can also be liberating, enlightening. When I first saw the list of symptoms, the diagnostic criteria for BPD, it was like a biography. Well, except for the lying and manipulation stuff. That's not me. But literally everything else. And in that moment, I was able to slot all the behaviours into the right places, understand why I reacted to things the way I did, understand what the clawing, hungry maw in my chest was.

Diagnosis outlines the difficulties we're going to have to deal with. That's why we don't like getting diagnosed: we worry about the additional energy we're going to have to find simply for the stuff of everyday life. We worry that we'll lose ability, that we'll lose friends, that we'll lose, as I did, work and home. In some difficult cases, I have to imagine that people avoid going and getting diagnoses precisely because they're not sure how much more they can manage.

But that, too, is why diagnosis is a liberating experience. It explains, on a surface level, yourself to yourself. It gives us perspective and tools to manage the energy requirements of day to day life. It helps us know ourselves, physically and mentally. It helps us navigate difficulty with grace and, if we're fortunate, a minimum of damage to our lives and loved ones.

I was crushed when I got my diagnosis for BPD. It meant that it was real and that I would have to work that much harder for the rest of my life just to get to a place that is a less difficult journey for many other people. But it also meant that I knew why I'd been acting the way I had for so long, why I felt the way that I felt. I began to recognize the challenges before they became abuse and vitriol. I started to understand how to navigate my condition in a culturally-appropriate way, and I started to find places in my life that either benefited, or benefited from, the way my brain is wired. Being lead singer for a band is one of the few places I don't feel I have to mask my condition.

Sorry, long post. Writer and all that. Diagnosis is not the end. It's not a beginning, either. I'm not going to claim that. It is the introduction of a new perspective, a very broad one that requires refinement and nuance before it becomes a useful life tool. But without it, our lives can be a nightmare of guesswork and frustration.

I wish I'd talked to someone about it sooner. An earlier diagnosis would have saved me an immense amount of pain.

#BorderlinePersonalityDisorder #BPD #Diagnosis

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Don't take my diagnosis from me

#MajorDepressiveDisorder #Diagnosis #finally #WhatNow

I wonder if anyone else was actually relieved at their MDD diagnosis? I mean I wasn't happy (I'm depressed, after all), but it seems to make so much more sense than just thinking I was such a failure at being happy for so long (35+ yrs?). The episodes have come and gone. And gotten worse. This one seems to be subsiding now.

Of course, now the anxiety kicks in - in my follow up appt are they going to take my diagnosis from me before I even get to explore it? Will I have some good days between now and then and they'll be like "why did you make up that story and fake cry all over us last time when you're obviously fine?"

My precious diagnosis.

I don't know what better is. I know what worse is, and getting that diagnosis actually has helped me out of some worseness. Does that make sense to anyone else?

I couldn't claim depression before because.. I don't know why. My previous therapists didn't diagnose depression before because... maybe because I didn't have weight gain/loss?

But I kept having episodes and I kept coming back to therapy and I kept not knowing why.

Until 5 minutes with one BHP after one PHQ-9 questionnaire I took at a PCP visit to fulfill promises made under duress to my family that was not mental health related.

And now I hope I can begin the process of understanding better who I've been most of my life. If I get the right therapist. If I stick to it. If there's anything to understand. If I live long enough.

I hope so. I hope there's something worth the effort on the "other side". It's way easier just "being happy with being unhappy". I'm great at it. Until I'm not.

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Happy Birthday to me I'm now officially depressed!

#MajorDepressiveDisorder #Diagnosis

So for my 50th bd (1 mo ago), I finally made an appt to my pcp to make my wife and mom happy - I hadn't been for close to 8 yrs and it had been more than a decade since I'd been without a specific issue.

Looong story short, there was a PHQ-9 questionnaire, a somewhat incoherent convo with my pcp, 2 weeks of new physical symptoms including gout in a new foot, achilles tendon issues, reaction to the vaccine, and I'm feeling short of breath a lot. Then the behavioral health referral and I was bawling inside of 3 minutes in the door, and immediately diagnosed MDD.

I know many have trouble with the diagnosis. But as horrible as my 50th bd month has been through all this (layoffs at work - lucky to survive, trying to finish a home remodel, the contractors burned our garage down, I've been feeling my emotional distress well up for a while now and thoughts of worthlessness, trying to move back to our unfinished house, no place of comfort, my body hates me now) - this diagnosis is probably the one thing I feel best about.

I've wondered why I was so seldom truly happy most of my life. I've wondered about but never so seriously. I've been in therapy several times over the last 25 years, but never diagnosed with any sort of depression. It was always identified as because the situation was foremost in my own mind. I do remember when asking them about they basically just answered, have you experienced weight gain/loss? So I guessed I wasn't really depressed.

This diagnosis frees me to seriously consider how to help myself long term. I am grateful. Though I don't know what is to come next.

There is so much more to the story. I'll hopefully get through that with my next therapist.

Right now I'm feeling okay. Must be cured, right? Forget about crying at the insurance agent's office this morning. Forget about whaling into my bedsheets yesterday remember my father's death 17 years ago. Forget about feeling for the last 3 months generally and the last 3 weeks especially that I didn't really care about being alive, other than not wanting to leave a burden on my family with my absence.

Happy birthday to me. Maybe this will be a turning point. My bday was during Awareness month.

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New Podcast Episode: Monday, June 19!

The second episode of "Health and (un)Wellness: Mighty With Migraine" releases on Monday, June 19.

Let's pause for a moment. If you missed episode one it's available on your favorite podcast platform right now: bit.ly/3NfKKhy

While the first episode is a primer all about migraine, episode two talks about the diagnosis experience around migraine. Whether you've been diagnosed for a long time or are new to seeking a diagnosis and are unsure where to start, everyone will walk away from this episode a little more prepared for that next appointment.

RSVP to be among the first to hear the episode live: events.themighty.com/events/details/the-mighty-chronic-illne...

#Migraine #chronicmigraine #ChronicPain #ChronicIllness #Diagnosis #MightyEvents

Migraine 101 by Health and (un)Wellness

The inaugural season of Health & (un)Wellness — Mighty With Migraine — kicks off with this well-rounded primer on the common yet disabling neurological disease. Meet hosts Kat and Skye as they explore some foundational migraine vocab and rant about barometric pressure changes. Come for the brain-bending info, stay for the laughs! Head to The Mighty for a transcript of the episode and to read related stories: https://bit.ly/43iqpO0
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Talk About It Tuesday: Diabetes & Excessive Thirst

Did you experience excessive thirst as a symptom of your diabetes?

Saw this question last week on social media and thought this would be a great question to ask the community.

In the comments, answer in emojis:
👍- Yes
👎- No

#Diabetes #DiabetesType1 #DiabetesType2 #Diabetestype3 #lada #mody #GestationalDiabetes #JuvenileDiabetesType1 #ChronicIllness #AutoimmuneDisease #symptoms #Health #Diagnosis #Support #SupportGroups #CheckInWithMe #MightyTogether

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Live a Little

Hello Everyone.
It has been a while since I was last here. I used to post regularly, but things got caught up. My father passed away last year in #2022 and it was not fun. I was very #sad and did not know what to do. #Grief is never anyone's friend. Sometimes you have to live a little and let go a bit. Tonight I was #Thinking about #Life and all of the #wonderful things that exist. I also think about all the #horrible things that have occured.

I have been #focused on the wrong things lately. Especially with a recent #Diagnosis of #ADHD and how my #Brain never shuts up.

I wondered if I was insane sometimes. I have been #sick a lot the past month and even now. It feels like every other week I am sick with something (virus, stomach problem or a cold). I think I am #okay though. I am going to #KeepMoving forward.

How are you all doing?


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Major update conclusion

#Doctors #Diagnosis #CTScan #MRI

(Part 2) So, where does this leave us with all findings? That's the thing. . .I got a strange call from a sympathetic receptionist a few days after the neuro appointment who seemingly understood my situation. She told me that he had reviewed my neurology report & was very interested in my case. She understood the medical gaslighting that was going on & she asked me, did your previous geneticist do a connective tissue panel? I gave the long answer of no. She told me he would like to see you when all these appointments are over because he has some ideas as to what we are dealing with here. Who was this person? The neurologist personal geneticist. All that's left besides pt is neuro follow up & I'm going to see this geneticist who is interested in my case. But you wanna know what makes him standout to me? His clinic was established as recently as 2021! 0_0

The original genetic testing didn't cover disorders of collagen function & I think I know what "some of his ideas" are. . .

All I'll say is watch this space. Summer is about to HEAT UP! Peace out everyone.


Major update

#Doctors #Diagnosis #MRI #ctscans

(Part 1) Hi guys & gals. Some very interesting developments have surfaced over the last few weeks & admittedly some worrying things. firstly, the neurologist appointment went fine but there quite a few new diagnosis that where made. Firstly I have conjugate gaze palsy, an Astasia Abasia due to what he thinks is FND, however at the end of his report he stated an unspecified ataxia. Your guess is as good as mine on that one. Lastly, he diagnosed me with a dilation of my ventricle that causes accelerated aging i.e dementia. He wanted to send me to physical therapy & they where nice so that's good. I saw the spinal specialist & this one. . .this one sent a chill down my spine literally. The examination went fine & he recommended botox injection from his clinic if the current rehab facility doesn't succeed. My poor mom said "we will exhaust all other options." That's what scared her, what scared me was when we talked about how this grade 2 cerebral palsy came out of nowhere. How did this cp flare up like this? He has no clue, well, I MIGHT & I DON"T THINK IT'S CP! I decided to join labcorp & was looking at previous blood results when I stumbled across one taken 10 months ago that showed my A/G ratio, sodium, carbon dioxide, hematocrit, & blood urine nitrogen where all off. It could have something to do with my adrenals & kidneys. Spinal wise they found cervical disk denegation, stenosis, bone spurs all along that region. Then the ENT told me to get more imaging & I had to wait another week because insurance... We found there was a laryngocele & diverticulum. There was no cancer which was our initial concern, instead the Ent said it was rare & congenital.

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