you are valuable

TW: medical gaslighting, brief mentioning of SH scars, brief mentioning of the death of a parent

The first one was a dermatologist's appointment in which I also wanted to get a second opinion on my exfoliative cheilitis/eczema on my lips. The ointment my previous dermatologist (who retired) prescribed me with worked really well, and other people don't notice that there is anything wrong with my lips since they healed up so much. However... my skin never fully recovered, so while my lips at least look pretty normal again, I still have to be very careful with brushing my teeth as well as eating. I also have to drink with a straw and my lips can't have water run over them when I take a shower or wash my face. These things still bother me in my daily life, so I asked the dermatologist whether there is anything else that could be done about it since I still struggle with it.

She basically responded by telling me that my mental state has an effect on my skin and that it's basically on me [for having bad mental health] that my lips won't heal further. She then added that she can see that [I struggle with my mental health] with a nudge towards my self-harm scars.

I know that stress can trigger eczema, but still, it was the way she said it... I was in shock. The audacity to indirectly tell me that my skin condition is my own fault and then pointing towards scars that are 13 (!!!) years old. I struggled with this as a young teenager, I haven't done that to myself in ages. My mental health has also improved tremendously since this eczema/exfoliative cheilitis started in 2021. Back then, I was stuck in an anxiety attack that lasted for 9 months and during that time, my dad also passed away. I was anxious and on edge from the moment I woke up to the moment I finally fell asleep, then rinse and repeat. The anxiety frequently accumulated to a full blown panic attack, but even after that, I went back to an anxious and on-edge state of mind. No rest or being able to really calm down for 9 months straight. My therapist and I worked so hard on my anxiety since I've gone through multiple anxiety disorders (social anxiety, agoraphobia, panic disorder, health/illness anxiety). After 9 months, one prolonged therapy session broke the ongoing anxiety cycle and from then on, I was able to slowly but surely overcome my anxiety and panic. I've improved so much that I've rarely had any panic attacks in the past 2-3 years and I also don't really struggle with anxiety attacks/prolonged feelings of anxiousness anymore. I now even manage to feel calm in situations where even regular people feel nervous and/or anxious... but of course, according to that dermatologist who knows hardly anything about me, my current mental health is at fault for my eczema/exfoliative cheilitis. Thanks for nothing. 🙃

To my suspected perioral dermatitis, she also basically said "this rash around your nose area simply comes from oily skin"—uhm, what?! This is the second dermatologist in my country that doesn't seem to know what perioral dermatitis is?? I once went to another dermatologist who basically told me, "oh, yes. Some people get these strange rashes around their noses, but we don't really know what's causing it and what could be done about it."

Bruh. Who's the skin expert here fr?!

But back to the story:

I had started the day on such a positive note; it was one of the first sunny and warm spring days of the year, I went to get a few things from the pharmacy, bought some food, and got my hair & bangs trimmed at the salon and then went to the dermatologist's appointment. I left the office feeling so devastated and depressed, I couldn't even appreciate the beautiful weather anymore. I just wanted to go home, kick some rocks, and then hide under my blanket.

The next morning, I had to visit my GP. An appointment in the morning is already a terrible idea with my delayed sleep phase syndrome, but that was the only available appointment if I didn't want to wait 5 weeks for the next one...

Anyway, my doctor has known about my chronic illness struggles for the past 10 years and he also knows about my autism and ADHD diagnoses etc. So far, he's always been very nice and understanding, especially when we discussed my audhd since he told me that his youngest son was autistic and ADHD, too. I went into this appointment thinking it would go well. I wanted to ask him whether he could refer me to an immunologist so I could get tested for possible MCAS. Well... that didn't go so well.

I don't know whether he was simply stressed since he was on vacation and probably had to catch up on work (we've experienced some doctors being uncharacteristically harsh when you have an appointment shortly after their vacation ended in the past) or whether there were other things that ticked him off, but whatever it was, he reacted to my request so cruelly.

He didn't find it necessary at all for me to visit an immunologist and told me, "since you haven't visited me in a while you can't possibly be sick enough to see a specialist."

What the actual fuck?! Please excuse my language, but seriously, what the fuck???

He knows that I've struggled with chronic illness for the past 10 years

I've never once visited him and told him that I felt good, I always told him that I'm struggling with chronic health issues

Why the fuck should I constantly schedule appointments when there is nothing more that he can do for me???

They always tell us not to run to our GPs with everything so that doctors don't get flooded—I simply didn't want to waste his time and make space for patients that actually have health issues that a GP can help solve.

I just... can't. This wasn't the only thing that he threw at me, he also dismissed all the health issues I listed as proof that it would be worth it for me to get checked out by saying that these are all "normal" things that women experience. No?? Tf, they are not?? It's absolutely not normal to deal with all the health issues I deal with, but thank you for gaslighting me.

Furthermore, he also made me feel like a lunatic for simply wanting clarity about my symptoms and what I may or may not be suffering from. He basically said, "And so what? What would knowing that you have this illness help you with? You also got that sleep disorder diagnosed and now what? The diagnosis didn't do anything for you now, did it?" I then explained to him how knowing that I indeed suffer from a neurological sleep disorder helped me a lot in the ways I view and think about myself and my sleep problems even if there isn't anything that can really help me. He didn't really care about that. However, he should've known that wanting clarity about what's going on with me is SO IMPORTANT for me as an autistic person, and that I'm also not imagining 100 different illnesses that I could have. Just like with my autism, ADHD, and sleep disorder, I first diligently researched these diagnoses and carefully evaluated myself before I dared to talk to professionals and ask for an official assessment. So when it comes to POTS and MCAS, I didn't simply see these diagnoses floating around and thought to myself, "Oh I might have them, let's run to a doctor." Of course not! I researched them further and again, carefully evaluated myself and even did tests at home to see whether my assumptions are valid enough to schedule an appointment with a specialist.

Anyway, I honestly got too stunned to speak the more he went on and I couldn't believe that he'd suddenly treat me like that after always being so nice to me. The last time I saw him, he literally showed so much care and told me that I could always contact him if I needed anything... and now... this. Did he, perhaps, feel offended that I wanted to see a specialist? Did he expect I'd come see him more often after he told me that I could always contact him (which, btw, is super hard since he's often on vacation and my mom sometimes has to keep calling his office for a whole work week before someone finally picks up the phone so we can get an appointment...)?

So many questions... so much confusion... just way too much for me to make sense of it all. All I know is that I had to suppress a meltdown that was threatening to happen after he told me all of these things and I just couldn't wait to get out of there.

Yes, there are situations and conditions in which an approach like this could help, e.g. exposure did help me deal with my anxiety disorders and panic attacks in the past. Of course, this has to be done in a controlled manner and you genuinely need to feel ready to expose yourself to the panic inducing situation. However, my main point is that yes, when it comes to something like anxiety disorders, avoidance ultimately increases fear.

For certain chronic illnesses like pots, me/cfs, mcas, etc. as well as for autism, "pushing through" can actually be dangerous and lead to long-term worsening of your illness, or long-term autistic burnout. It's so frustrating when uneducated people feel the need to subtly tell you to "try to do more," and you have to explain over and over again that you're applying a technique called "pacing" and that it is vital for symptom management and keeping your energy levels stable.

Like yes, I don't 'look' sick or disabled on the outside.

Yes, we can hang out, do something together, or even go on a short trip.

Yes, you'll likely not see (m)any signs of my illness or disability during the time we spend together.

However, there is a plethora of things you don’t see.

You don’t see how much I had to prepare in advance to make sure I can manage my health and mask (more or less) adequately during the time we spend together.

You don’t see how I'm covering up my pain/cramps/headaches/migraine, my fatigue, my nausea, or my dizziness with a smile.

You don’t see how much I have to mask my neurodivergence just so you don't get upset.

You don’t see how much energy masking takes and how much it exhausts me.

You don’t see how hurt I feel by you weaponizing my disability against me even though I'm trying so hard to explain and help you understand my situation.

You don't see how I have to go over my limits and don't get adequate rest and accommodation during the time we spend together.

You don’t see how much effort I have to put into being able to just show up for you.

You don’t see the consequences and the costs I have to pay for us spending time together.

You don’t see how my body crashes, especially after a short trip when I had to function for a few days without rest days in between.

You don’t see the post-exertional malaise I have to deal with after doing literally anything. Even the smallest things can trigger PEM and mess up my system for a good couple of days.

You don’t see the blur I live in most of the time because my head feels clouded from all the symptoms I have to deal with on a daily basis while somehow trying to function and survive.

Let me elaborate:

TL;DR: The difficulty of navigating life questions like "what do you do for work?" as a chronically ill/disabled person who doesn't want to fully disclose their situation or dump it all on a person they just met, but also doesn't want to lie, and the difficulty of feeling valuable in an achievement-oriented society when you can't be as productive as healthy/able-bodied people.

Work is a good example. I studied at a distance university because I was too ill to physically attend university daily, so studying from home allowed me to still get a good education. However, after university, it was time to find a job, and that proved to be very difficult. Not only was it hard to find jobs that both seemed accommodating enough and matched my qualifications, but I also had to actually land the job. On one hand, it's much harder for autistic people to get a job since job interviews are such tricky situations for us to manage. On the other hand, I also kept getting the "unfortunately, we're looking for someone with work experience" response, which is quite disheartening since how will I gain experience if no one gives me the chance to do so?

After around a year of applying for jobs, I finally landed one that even matched my interests a lot. However, it's only a small part-time job. I am aware that I'll never be able to work full-time, but my goal would be to be able to work maybe 50% (perhaps even 60% if I find a job that would allow me to work—at least partially—remotely). At the moment, this smaller percentage was a perfect start into the working world because starting work definitely took a toll on my body/my health, and my stress levels increased to a point where I once had three full-blown meltdowns within a week (in comparison to that, I hadn't had one for around 6 months before that). I hope that things will calm down as I get used to working and everything will become more of a routine for me.

Anyway, the point I'm trying to make is that although I am working now, it's only a small part-time job. So when I meet new co-workers and they ask me what else I do, e.g., whether I'm still studying next to this job or something, it's always hard for me to answer these types of questions. I can't blurt out that I'm chronically ill and disabled to a co-worker I'm meeting for the first time (plus, I'm very on the fence about how open I should be about my situation at work in general...). But if I tell them that the only thing I'm doing right now is working this part-time job without disclosing my situation (and looking healthy/able-bodied from an outsider's POV), they'd think I'm some kind of lazy person and would probably judge me for it (since people judge us chronically ill and disabled folks even when they know about our situation). So, I always have to elaborate and explain that I recently graduated from uni and finally wanted to get some work experience, but that it was hard to land a job and I was looking for a long time and finally was successful with this current job. Now, I'm focusing on getting settled here and then I'll think about whether I want to go back to school next to this or I'll start looking for a second job. And while all of that isn't straight-up lying, since I have played with the thought of going back to school to get a master's degree at another distance university at some point... just not in the immediate future. And if it's not possible to maybe stock up at my current job (I did tell my bosses that I'd be up to working more hours if there is a need for it), I probably will have to look for a second part-time job... but that is also not on my immediate to-do list since I'm still getting settled here.

So, while I'm not exactly lying, I also can't be fully honest or authentic about my situation and outlook for the near future, and that just feels uncomfortable. I hate not being able to be fully honest, but I've learned that sometimes it's better to answer in this way, and that I also can't overwhelm people by disclosing my entire life situation (and I also don't have to!). It's easier to spoon-feed others the truth slowly and in small doses, and in general, I'm not obliged to disclose anything at all—this is still my private life, and I can choose how much I want to share. I need to remember that and use it to balance out my need to be fully transparent.

I also have this same issue when meeting new people outside of a working context (especially in a "could possibly lead to dating" context). Mundane questions like "what do you do for work" are usually asked very early on. Now that I have a job, I feel a bit better about this question since I'm actually able to tell the other person about my job (as opposed to disclosing that I'm looking for a job and currently don't have one), but I still get anxious about this topic. What if they suddenly make a comment or ask something that would put me in a position of "either I'll have to disclose that it's a part-time job or I'd have to lie (which is off the table for me)"? In that situation, I'd either have to use the evasive explanations that I also give to coworkers, or I'll open up a little bit about my situation.

I am so tired of people lacking the necessary empathy to imagine what life with chronic illness/disability might look like, but then still talking as if they know everything/best.

Statements like:

"everyone carries their own baggage"

"it's normal to mask and adapt to different situations/around different people"

"yeah, dealing with chronic pain must suck"

really irritate me to an immeasurable degree.

Let me take a look at each of these and explain the context surrounding these statements and why they frustrate me so much.

"everyone carries their own baggage"

This statement was said in response to me explaining the extra load of weight I carry trying to get through life while chronically ill and disabled.

Yes, it is true that every person has their own problems, but this statement completely invalidates and diminishes the struggles that come with chronic illness/disability. It puts that on the same level as "general" problems that able-bodied people can also go through. What usually gets forgotten here is that chronically ill/disabled people can also deal with these "general" problems (e.g. friendship struggles, love struggles, work struggles, family struggles, etc.), but they have all the struggles from their illness/disability on top of that. So acting as if these two sets of problems are the same/comparable is extremely invalidating and hurtful.

I am not being seen. I am not being heard. I am just pushed aside because "everyone deals with this" (no, they don't).

"it's normal to mask and adapt to different situations/around different people"

This statement was said to me when I was trying to explain what autistic masking is and why it's so exhausting for me.

This statement is just absolutely wild, imo. Yes, of course, people adapt to different situations and people to a certain degree, but I assume that neurotypical people adapt in a way that 1) isn't extremely exhausting/doesn't cost a huge amount of energy, 2) still allows them to stay true to themself/be authentic, 3) doesn't cause/worsen mental health struggles.

Studies have shown that autistic masking is extremely harmful to the autistic person's wellbeing and also increases the risk of su*cide.

It is extremely exhausting.

You feel like you have to abandon yourself.

You constantly play a role and use hypervigilant self-monitoring to stay in character.

You feel so alone while surrounded by people since you can't be your true self around them and you know they only accept your masked self, so you feel like no one would love your unmasked, true self.

Whenever I come home, my mind spirals and overthinks the social interactions I had and whether I masked well enough or not (I am able to mask, but not to a "perfect" degree where you truly don't notice anything) and it just takes such a toll on me, both mentally and physically.

Acting as if neurotypical adapting to different people/situations is the same as autistic masking isn't only blatantly false, it's also incredibly invalidating of the real harm that masking does to us autistic folks.

"yeah, dealing with chronic pain must suck"

This seems like a decent statement and it is. However, the context is frustrating, let me explain: So, when I talk about another person who deals with chronic health issues and also experiences chronic pain, I'd receive a statement like that. Or, I've also received it in a situation in which we were talking about an athlete who got injured and my conversation partner mentioned that this athlete should be careful because such an injury could lead to chronic pain and that would really suck.

In the two scenarios described above, it is apparently possible to have some compassion for people dealing with chronic pain. However, when we're talking about me, suddenly I'm either not believed for dealing with chronic pain or it's simply something that conveniently gets dismissed and overlooked.

The frustrating thing for me here is therefore: Why is understanding possible when it comes to other people, but not when it comes to me? Shouldn't people who are so close to me at least try to understand where I'm coming from just like how I always do my best to listen to them with empathy and show compassion for their struggles?