u/heldtogetherdaily

I don’t regret trying antidepressants. I had to know! I was desperate for something to work, starving for someone to care, and willing to try anything for even an inch of progress. But looking back at the trail of prescriptions makes me burn with a mixture of frustration, jealousy, and profound grief. I watch other people find a pill that fixed things for them, while I was thrown into a psychiatric blender.

My journey wasn’t guided by careful medicine; it was a circus of medical incompetence. My first psychiatrist was a quack who tried to force me onto antipsychotics that weren't even remotely indicated. Later, a neuropsychiatrist coldly recommended pushing my dosages way past FDA guidelines - treating my body like a chemistry experiment, even though I was already a non-responder at the max therapeutic dose. Now, I finally have a nurse practitioner who is kind and genuinely tries, but even she is visibly out of her depth with the complexity of my case.

For years, my life was just a foggy whirlwind of switching pills. I endured a relentless onslaught of debilitating side effects with minimal therapeutic results. While my brain was swimming in this chemical chaos, I was dealing with constant diagnostic overshadowing. My terrifying neurological symptoms were dismissed over and over. They took one look at my chart and slapped the label of "anxiety" on everything. I wasn’t anxious, it wasn't anxiety, but nobody heard me. Every doctor’s appointment felt like screaming underwater. I lost my voice somewhere in that fog, and the sadness of that loss sits heavy in my chest. I still haven't found my voice yet.

I lost so much of my youth to these medications. I lost my identity, my autonomy, and my reality. Over the last few years, I have slowly come off all my mental health medications, and the bitter irony is that my anxiety is now manageable, and my depression is pretty much gone. It leaves me standing in a strange, confusing space. I wonder if meds were rushed into too quickly. It makes me question if I ever even needed them in the first place. I don’t even know what to think, except that I was a desperate child who needed real help, and instead, I was lost in the process.

I just need to vent to people who might actually understand because I am completely worn out.

Over the years, I have been put on so many different medications.

Which would have been fine if they worked, they didn't, and to make matters worse, a lot of them were for misdiagnoses. Nearly every time I start a new medication, I get side effects - severe ones. Which compounds my frustration.

Right now, I am actively dealing with some severe unexpected side effects from a medication, and it is draining the life out of me.

While dealing with all of that, a different doctor recently suggested a new medication I wasn't comfortable taking. Because I advocated for myself and said no, he officially labeled me as "noncompliant" in his clinical notes. When I brought up my concerns about the medication with another doctor for her opinion, she told me she thinks I expirence the "nocebo" effect.

How is that even possible? How can my brain manifest physical side effects that I didn't even know were possible before taking the pill? It feels like a lazy way to dismiss my actual, physical suffering.

I am just so exhausted, frustrated, and completely broken down by this system. Addressing my health problems was supposed to be a step forward for me. It was supposed to help! Instead, literally nothing has gone right, and the people who are supposed to help me are just writing me off. I feel so incredibly isolated.

Can anyone else relate to this, or am I completely on my own here? How do you keep fighting when it feels like your body and your doctors are both working against you?

Hi! Has anyone else noticed their nails changing quite a bit on accutane? I have noticed more nail growth, but also weak, brittle nails that products don't adhere well to. I do my own nails with a builder gel, and before accutane, it was very easy for me to maintain medium length nails. Within the last few weeks, I had to cut my nails short due to a rare side effect of accutane called periungual pyogenic granuloma, and since getting acquainted with my gel free nails I've noticed that not only are they super dry, they are quite thin and brittle. I know it's not the gel because I have been doing my own nails for years, and they have never looked like this when I've taken the gel off. I tried to use some builder gel to give some structure back to the nails, and I am not expirencing my typical retention. I am wondering if anyone else has experienced this, and if you have, how did you fix it?

I have hit a wall.

I am not a healthcare worker, I am a patient. Navigating the healthcare system has become an exhausting, full-time job that I never applied for. I am deeply burnt out by it all. All the hours spent on the phone chasing referrals, insurance approvals, and billing errors. All the dismissal and having to fight to be taken seriously after waiting months just for a ten-minute appointment. It is exhausting having to act as my own medical coordinator because doctors don't talk to each other. Then there is the constant anxiety of managing chronic symptoms while navigating bureaucracy meant to help me, it is exhausting. It feels like the system is designed to make people give up! and I know I am not alone in feeling this way. Whether you are a fellow patient who gets it, a healthcare worker wanting a view from the other side, or just curious about my life as a chronically ill girl navigating chronic illness at the rip old age of 20... ask me anything 🙂

Hello! I am on absorica isotretnoin. I am just finishing up my 4th month, and my dosing was as follows 20 mg, 40 mg, 40 mg, 40 mg. I am 175 lbs (I was 200 lbs when I started my course, I don't know if that is relevant) other potentially pertinent medical history is that I have hEDS/HSD.

My hands have developed highly painful inflamed nail beds and granulated tissue. My dermatologist said they are periungual pyogenic granulomas, a rare but possible side effect of isotretnoin.

My dermatologist told me this side effect is so rare that she has only seen it three times in 15 years. She told me we could lower my dose, stop the medication completely, or do nothing. We tried a topical steroid (betamethasone dipropionate cream, USP 0.05% twice a day for a month) but it did not help.

My fingers really hurt, but I do not want to stop the isotretnoin if I can avoid it because my skin is finally clearing up. I love my dermatologist, however the appointments are quite brief and I don't really understand what my options are or maybe I just don't like the choices and am hoping that there is some secret fourth option she forgot about.

Are there any clinical interventions or procedural options that exist for managing this side effect when standard steroids fail? Was there anything I could have done to prevent this from happening? If I stay on the isotretnoin will more of my fingers become inflamed?

Hello! I am on absorica isotretnoin. I am just finishing up my 4th month, and my dosing was as follows 20 mg, 40 mg, 40 mg, 40 mg. I am 175 lbs (I was 200 lbs when I started my course, I don't know if that is relevant) other potentially pertinent medical history is that I have hEDS/HSD.

My hands have developed highly painful inflamed nail beds and granulated tissue. My dermatologist said they are periungual pyogenic granulomas, a rare but possible side effect of isotretnoin.

My dermatologist told me this side effect is so rare that she has only seen it three times in 15 years. She told me we could lower my dose, stop the medication completely, or do nothing. We tried a topical steroid (betamethasone dipropionate cream, USP 0.05% twice a day for a month) but it did not help.

My fingers really hurt, but I do not want to stop the isotretnoin if I can avoid it because my skin is finally clearing up. I love my dermatologist, however the appointments are quite brief and I don't really understand what my options are or maybe I just don't like the choices and am hoping that there is some secret fourth option she forgot about.

Are there any clinical interventions or procedural options that exist for managing this side effect when standard steroids fail? Was there anything I could have done to prevent this from happening? If I stay on the isotretnoin will more of my fingers become inflamed?

TLDR: I have nail bed inflammation/granulation tissue from being on isotretnoin. My dermatologist says it's super rare and told me to just deal with it or quit - help!

I am 175 lbs and have done one month on 20 mg and three months at 40 mg. For the most part, aside from the anticipated dryness, my isotretnoin expirence has been uneventful. Until now 😩

I am dealing with an incredibly painful side effect right now. The skin around my nail beds is inflamed, swollen, and growing raw, bleeding granulated tissue (pyogenic granulomas) It hurts to do literally anything with my hands. My dermatologist told me she has only seen this three times in 15 years and gave me three options: lower my dose, suffer through it, or quit isotretnoin.

We tried topical steroids, and they barely made a difference. I really don't want to stop my course because my acne is just starting to clear up, but I really need to be able to use my hands. Has anyone else dealt with this while on isotretnoin? What did you do to manage the pain? Did any specific soaking routines, over-the-counter care, or procedures help you get through your course? I feel completely stuck 😭

Welcome to r/tapeandspoons if your body feels like it’s being held together by KT tape, pure willpower, and whatever spoons you have left, you’re in the right place! This is a community built for people navigating the messy intersection of complex chronic illnesses because living with overlapping conditions is deeply isolating. The toll it can take on mental health is heavy, especially when trying to find your footing between fighting for proper healthcare and trying to survive the day-to-day becomes a full-time job. Whether you are dealing with a lifelong diagnosis, fighting for answers in the healthcare system, or supporting someone who is, we're excited to have you here!

This space is for you. You can post anything that relates to life with chronic illness/disability. It is very important to keep this space friendly, constructive, and inclusive. To keep this a safe and validating environment, please read and abide by the community guidelines. Some of which are:

• No Definitive Medical Advice: Feel free to share what worked for your body, but please don't diagnose others or give medical advice. Regarding health concerns always consult a medical professional.

• Validate, Don't Dismiss: Everyone's chronic illness journey looks different. Respect varying symptoms, treatment paths, and lived experiences without judgment.

• No Bullying/Harassment: Aggressive behavior, fake-spotting, "sick olympics" or tearing others down will not be tolerated. Treat each other with kindness.

• Be Intentional with Trigger and Content Warnings: When posting heavy mental health vents or touching on potentially difficult topics, please use the reddit "spoiler" feature and add the appropriate post flair so members can be mindful of their triggers.

If you feel like you belong here:

1. Introduce yourself in the comments below! (What conditions do you manage, or are you a carer/supporter?)

2. Post something today! Even a simple question can spark a great conversation.

3. Invite others: If you know someone who would love this community, invite them to join!

4. Help us grow: Interested in helping out? We're always looking for new moderators, so feel free to reach out to me to apply.

Thanks for being part of the very first wave of this community 💞

Is anyone else completely exhausted by the stigma surrounding FND? I recently applied to a support program for girls with invisible chronic illnesses, but I was denied because they think FND is "just a mental health problem." Having been diagnosed since 2022, I am just so tired and lonely. Everything about this disorder is incredibly hard, and trying to build a community shouldn't be this difficult. Has anyone else faced this kind of exclusion, or have you found spaces where FND is actually understood?

What is dysautonomia?

Dysautonomia is an umbrella term for a group of medical conditions where the autonomic nervous system does not work properly. The autonomic nervous system controls all the involuntary things your body is supposed to do automatically - like heart rate, blood pressure, digestion, and temperature regulation. When you have dysautonomia, these automatic functions regularly malfunction.

What is POTS?

My specific type of dysautonomia is postural orthostatic tachycardia syndrome or POTS. This means my body does not properly adjust to gravity when I stand up. My heart rate spikes excessively just from going from sitting to standing, which causes dizziness, brain fog, extreme fatigue, and sometimes even fainting. It is an invisible illness, meaning I often look completely fine on the outside, even when my body is struggling on the inside 🙂

Hey everyone, I am 20 and need some ideas for things to do this summer. I am severely heat intolerant, meaning my body physically cannot handle being out in the heat. Because of this, I can't do typical summer outdoor activities, and honestly, I'm feeling really sad and frustrated about it. It sucks watching everyone else enjoy the weather while I’m stuck inside because my body won't cooperate.I really want to make the most of my summer break, but I need ideas for safe, low-heat, or entirely indoor activities that are actually fun for someone my age. What are some ways to have a fulfilling summer without overheating? Thanks in advance!

I’ve had HCBS for three years. It was the only thing keeping my head above water, and now it’s gone because of budget cuts. Because I lost my HCBS, I lost my medicaid, which was my safety net. As a secondary insurance medicaid was the only way I could actually afford my OT, PT, and the medications I need to literally function. Now I’m just... stuck?! I have private insurance, but without medicaid to offset the residual costs, I have no idea how I’m supposed to pay for all of it. I am so beyond angry. I’m scared, I’m exhausted, and I’m sick of being treated like a disposable expense by people who will never have to worry about how they’re going to pay for their next physical therapy session. It feels like the floor was just pulled out from under me, and I’m expected to just "figure it out" while my health is on the line. I’m not even looking for advice right now, I'm not sure this has a solution. I just needed to scream this into a space where people might actually understand how terrifying this is 😭

I’ve been diagnosed with FND for a few years now, and I’m only just starting to process how genuinely traumatizing it’s been to live with.

It took over two years after my diagnosis to receive any real follow-up care. Even longer to receive anything that was actually framed as “treatment.” For a long time, I was just… sitting with this diagnosis and these symptoms, trying to make sense of something that completely changed my life without guidance or support.

And I still don’t fully know how to feel about the diagnosis itself.

Like a lot of people here, I don’t know why I developed FND. Sometimes, it feels like the diagnosis was a cop-out, something that got assigned to me because I have a history of mental health issues. That nagging doubt sticks with me more than I’d like to admit.

At the same time, I have other health conditions, and so based on what we understand about FND, I can see how my body might have been more vulnerable to developing it. So I end up stuck in this in-between space of “this makes sense” and “but was I actually taken seriously?” does anyone else struggle with that?

I think one of the hardest parts of living with FND isn’t actually the symptoms, it’s the way this diagnosis can fracture your trust.

In doctors,

in the system,

& honestly, in yourself.

I find myself constantly questioning my own body, my own experiences, and my perception of those experiences. I’m still trying to come to terms with the fact that even if the diagnosis is accurate, the way it was handled still caused me harm.

I don’t really have a clean takeaway here. I guess I just needed to say this somewhere people might understand 😕