u/SWdesert

I don’t know why I’m posting, maybe I just need support right now but I feel so isolated and crazy and stupid for letting this happen to me even though I have no control over my illness. I thought I could be honest and ask for a work from home accommodation because of my seizures that have started (nothing that has disrupted my work, they are not observable unless someone is paying super close attention because they are focal). It has made it so I can’t drive.

But doing that opened up a can of worms because even though it’s something that could be allowed, now I’m being told they aren’t sure if I’m medically okay to do my job. My job is my health insurance. I can’t pay to see the neurologist which I desperately need to figure out what’s going on with me. I can’t get in any sooner than the appointment I have two months from now. I’m scared to go to sleep tonight because the last few nights I’ve become so terrified trying to go to sleep that my body starts shaking and I get myoclonic jerks and I get very hot/sweaty, heart racing and fearful.

I don’t know what I need I’m just scared.

I’ve noticed lately I struggle in sessions where there is a TON of avoidance and it feels like going in circles constantly redirecting while also naming the avoidance as a protective strategy that makes sense but is something worth addressing. I get frustrated because no matter what they say is the goal, the goal post keeps moving. I consider myself generally quite patient and aligning with practicing therapy through a “progress is not linear” mindset. But as I’m feeling quite impatient with a few clients, I’m taking this moment to really check in with myself and seek some feedback to see if I need to better address countertransference like am I projecting my own goals for them onto the client without realizing or am I just needing better technique?

I plan to address in supervision, it’s just difficult in CMH where I am an associate that does not make a lot so I can’t really afford outside supervision and despite the fact I’m kind of drowning my agency is reducing supervision from biweekly to monthly now. So obviously not sharing specifics here, but I’m thinking of some clients I’ve been seeing for a few years now from when I first graduated/was an intern. They have a history of long time of therapy with not a lot of measurable progress. I say measurable because it’s not like zero progress but I can’t say that therapy has really made a sustained difference in functional impairment or distress but self report is often inconsistent.

They communicate that they feel excellent rapport with me and I can tell by what they say and their behavior that they have grown a strong attachment so I try to use that as it is a strength. I’m noticing that they feel that their impairment has been marked and distressing but when we discuss how to reduce ineffective behaviors they will communicate that things are how they want and they actually have problems with the distress of trauma. I believe they do have distress but I don’t know what they want me to help them do because it always changes. Or we have suddenly “fixed” the problem and I notice what happens at this stage is I imagine myself after session and tell myself “oh my god I felt like a blood hound not trying to sniff out solutions but sniff out problems but the scents are so confusing and inconsistent that my nose is just covered in dirt!”

I think my countertransference happens where I feel taken advantage of and I don’t know why. I imagine there’s something about the way I’m thinking that’s wrong, and that the clients behavior is 100% a trauma response they don’t fully recognize. But I feel like such a bad therapist in these moments because I want to truly be helpful and when I can’t help them achieve their goals because I don’t know how or even how to understand their goals, I get frustrated trying to look for the problem. And in the moment it feels like the client but if it’s not the client then it feels like me.

Ugh maybe I just want to know if I’m searching too hard for problems or if I’m inaccurately perceiving their behavior or my own? I just know I need help and I have so many things going on right now with chronic illness and stress that I’m choosing to find different ways to approach problems to hopefully make work less stressful.

Has anyone noticed with their own AE that they made a change to their diet and the active flare significantly cooled down? Not went away but just got better. My flare started a month ago and all of this last week I cut way down on sugar and now my speech issue has resolved pretty much overnight. I still have symptoms but they are also much improved.

I usually do well with clients who struggle with attachment but some of the more extreme challenges leave me unsure how to support when support feels like it feeds the fixation on the therapeutic relationship.

I’ve been going in circles with someone as they come to therapy at times acknowledging pain, but quickly proclaiming their success in overcoming the trauma. It’s apparent to me this is a way to cope. This person has disorganized attachment and struggles to maintain relationships. Shifting from idealization to devaluation regularly and feels that the next fixation is always going to fix everything.

I’m very disoriented working with them and I can tell they feel this way internally. I find myself not knowing where my attention should be. How do we find some stability or an anchor? There is very, very low insight and I’m trying to work with their strengths but it’s very hard to know what it would look like if we achieved what they wanted. I say, if this is true and this opposite thing you say is also true, help me understand how both can be accurate? I want to understand.

It feels like someone circumventing logic to protect the truth they feel safest with. So when someone is rejecting logic, how do you help them? I guess a part of me wonders if they truly understand how much pain they appear to be in.

I was already chronically ill before I became how I am now, within the last few months, specifically within the last few weeks where things have escalated. I’m walking around having seizures and stroke like symptoms. My doctor wants me to see a neurologist so I can get evaluated because my symptoms and progression of disease perfectly match a very rare neurological disease.

I have to wait three and a half months to get in. I’m walking around feeling like I’m going to literally implode in my brain and it’s so isolating. People around me at first were scared for me and trying to support. But I feel everyone has backed away because they don’t know what to do. I have to work and act like everything is fine at work due to the nature of my job, although my illness is obvious to anyone with eyes.

I tried looking online for groups for this disease and I found a couple, but when I try to engage it seems very hard to connect like the group is not very active or I just get lost in the conversation and become an observer. I just want community.

F, 32, undiagnosed but suspecting SREAT, waiting on neurology evaluation. I’m wondering if I had a seizure. I’ve read about a presentation that sounds kind of like what I experienced.

I was sitting having a conversation and not feeling well. All of a sudden I start to feel not dizzy but kinda woozy in a way, and this wave of what kinda felt like nausea starts coming up from my stomach to my chest. I started feeling my jaw shaking like when your teeth chatter and my heart rate just skyrocketed. I bit my tongue a couple times on accident during. I have the jaw thing sometimes and I’ve started getting those heart racing things but my hearts been checked and it’s normal. But I did read that it might be a seizure. It only lasted like 10 seconds and immediately went away but I felt totally drained even more so the rest of the day.

32, F, undiagnosed. I’ve always had various health issues but NOTHING like this. Last year, after some symptoms including vertigo, flushing, heart palpitations, constipation, brittle hair and nails, weight gain, etc appeared I sought medical help which didn’t give me any answers.

Until for about a week I developed nerve pain, tremors, muscle jerks, head pressure/eye strain, worsened heart palpitations, stiff neck, localized pain in front of neck where thyroid is, and more, I went to the ER because I was scared. I couldn’t talk without significant effort to push words out and couldn’t fill out forms with my birthday and name because my brain just wouldn’t let me. That day of those peak symptoms were short lived, but they followed several weeks of noticing balance issues, memory loss, insomnia, and a mild visual hallucination.

The ER doctor suggested I have my thyroid checked. Luckily the scary symptoms only lasted a couple days at that point but some remained. And while I was dealing with subclinical hypothyroidism, I was diagnosed with Hashimoto’s autoimmune thyroiditis because my TPO and thyroglobulin antibodies were very elevated. Fast forward a year, although it took me quite some time to get a doctor to agree to treat my thyroid (they said TSH wasn’t bad enough yet, so I had to fight to be taken seriously) I have been doing much better with many of the endocrine symptoms that bothered me last year.

Now, again, some symptoms haven’t gone away. My ataxic gait is mild-moderate depending on the day, my memory and cognition are… what was I saying? And my emotions still aren’t the best. But in the last month things start ramping up but differently this time. I’m experiencing worse severe fatigue and cognition/memory, awful nerve pain centralized in random spots like an alien ray gun just targeting one spot at a time for a few days then alternating. Each pang is like 10 seconds then goes away, triggered by no known source.

Insomnia is worse, day time sleepiness only in the afternoon, and I forget to breathe causing my body to jolt with a snort almost daily, which never used to happen before. My mood is rapidly shifting, and I discovered I have a b12 deficiency but as I was resolving that, things suddenly spiked again but much scarier this time. The week of the beginning of this spike was starting to notice everything escalate until one day I suddenly could not speak without a stutter or occasionally slurring if fatigued significantly at the end of the day. I’ve been evaluated, with little to no answers. We’ve effectively ruled out stroke with imaging, and when I checked my thyroid antibody labs a couple weeks before the spike, they almost tripled..

They referred me to a neurologist and the fastest time I can get in, anywhere in the area is 3 months out. I will wait but I’m scared they won’t take me seriously and they’ll default to something like FND or MS when I need extensive autoimmune testing. My PCP is on my side but is limited in what they can do. I’m 90% sure this is likely steroid responsive encephalopathy associated with autoimmune thyroiditis. My presentation matches the stroke like episodes it presents and these symptoms are really disrupting my life.

Even if I’m wrong, I’m desperate to make sure we don’t miss something critical like the autoimmune factor I am so so certain is playing a role. The tough thing is even though they did markers testing for c-reactive and ESR, both are only mild-moderately elevated and they cannot tell you the levels of inflammation specifically in the brain due to the isolation of that area compared to the rest of the body.

Anybody have advice on how to be heard, how to advocate and how to survive this emotionally? I’m barely hanging on. It’s so much cognitive load just to do daily life and fighting another medical battle feels so overwhelming and un-winnable.

Edit: forgot to add demographics

I guess I’m posting here because I’m really at a loss and I don’t know who to talk to about this because I’m having a lot of shame and embarrassment and I think I need to know how other therapists would handle this situation I’ve found myself in.

I had a medical event last week that was seemingly the peak of some medical issues that have been ongoing for a while. I woke up one day and I could not speak normally, essentially I sound like someone who had a stroke. I did seek medical attention but at first I thought it was stress/anxiety so I didn’t think it would last but it’s coupled with some other symptoms I’ve been having that point to a neurological problem. The doctor doesn’t think I have had a stroke but we are working on figuring out what is going on.

In the meantime, I’ve really been struggling in session, because I’ve had to constantly say “I’m having some speech problems but just in case it worries you, I’m okay” to let my clients know because i really don’t want to go into detail about my medical issues but at the same time everything is not okay and I’m really scared. Luckily I have some wonderful clients who’ve been like “okay no worries” but I’m not sure what to do with new clients.

Should I give them the same heads up? I don’t want to draw attention to it but it’s already alarming to people who know what I normally sound like and it’s made me feel so self conscious. I know I shouldn’t feel embarrassed but I know that it’s making it even harder to mask the cognitive fatigue that my medical issues are causing as well, and I’m trying so hard to keep up. And medical leave isn’t an option for me right now because I’ve had to use it for this same ongoing problem so I could use PTO but I’m trying to be wise about it and I hate cancelling.

I’ve been experiencing concerning symptoms over the span of months, maybe years, that I believe are from issues with my brain/nervous system. I’ve been unsteady on my feet and have a hard time walking in a straight line constantly veering from side to side and it’s hard for me to steer my car without a lot of effort. My fine motor coordination is impaired because I used to be able to type/text very well but I can’t do it now without having multiple errors in every word I type.

I’m also having tremors, left sided pain randomly, and really bad memory problems affecting almost every conversation I have. It didn’t occur to me that I could have a b12 deficiency until my doctor (who has been kind of brushing me off) said I should check with labs. So I got them done a couple days ago and it came back abnormal at <200. It won’t tell me the exact number but it’s flagged.

I’m received a message from my doctor saying “we got your labs back. There wasn’t anything urgent or time sensitive so schedule a follow up appointment in the next 1-2 months.” I don’t want to overreact but I’ve been brushed off a lot and have had some long standing issues that were ignored even though I should have been treated for so I’m trying to advocate for myself more. Should I push for a sooner visit or maybe call them?

I work in CMH so I know many of my clients are doing the best they can with managing life on top of all the things they have to overcome due to a lack of resources, severe trauma history, etc. I know that many skills I am privileged to have been able to learn at a young age are not taught to everyone, especially those without support. But they are necessary things that adults need in order to maintain stability. They seem very simple, and not difficult to teach, but somehow they are very difficult for people to implement.

I am talking about things like writing things down. Making sure you have a calendar, your phone, or even just a piece of paper you can have to track appointments. Including the time they start and where it’s at and what it’s for. Being able to look at it at the beginning of the week and seeing you have one thing on Tuesday at 1pm that you need to go to. Or if you are disabled in a way that prevents you from doing these things, asking for help.

I know asking for help is hard, but when I see these things negatively impacting a client, I try to provide as much support as I can in helping them learn these skills, access the needed resources, figure out the barriers and in a way where I am very mindful to be supportive instead of shaming. I sometimes connect them to our care coordinators if they need even more one on one support.

It’s just frustrating because even with these efforts to focus on helping them reduce barriers, they are often displacing the responsibility onto others and sometimes me. They will not show up on zoom and I call, leave a message, wait, call one more time, and get no response. So it’s a no show. I sent the link to both phone and email, I’m constantly checking to make sure these are updated. But the client will call a few hours later and say “I never received the zoom link.”

Sure, maybe there was a technology issue or maybe your phone read it as spam etc, but why didn’t you call me to say you never received it? I send it the morning of, provide email, phone, and text appointment reminders (sometimes multiple or same day) and yet, it is only being communicated now that you didn’t get it? It tells me you didn’t know there was an appointment today in the first place. Or maybe there’s some other reason but I called twice and you weren’t available during your appointment time.

I’m not talking about one time. I’m saying clients will have these situations happen as consistent patterns. And I know it’s not just my clients either. We call to remind them of intake appointments and use a script with the start time, check in time, length of appointment, location/address, type of appointment, late arrival policy etc. but clients still either show up past the grace period, at the wrong location, believing they’ll be done an hour before they actually will be etc.

I’m trying to have empathy and give grace, but it happens so often and it is not just a few. So I’m looking for advice. I know I have to have realistic expectations balancing the fact that I’m not responsible for my clients behavior but that I also want to help them in any way I can which will hopefully increase the benefit they get from coming to therapy. Also, I understand it may not be the right time for some folks to come in for therapy. But I’m thinking of folks that do need it and this is how their life is and has always been. Not a new stressor that is changing a baseline ability to use the skills. They just don’t have them at their baseline.