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kirby-the-gorb · 2 months

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we are about an hour into rare disease day in my timezone! (it's always the last day of february, whether that's the 28th or the 29th.) the true prevalence of mast cell disorders is unknown, as they are often misdiagnosed or ignored. and mast cell activation syndrome, the most prevalent kind of mast cell disorder, only had diagnostic criteria laid out for the first time in 2010. so whether or not it's truly rare is really up in the air!

(personally I suspect it is just aggressively underdiagnosed but I'm not a research scientist or diagnostician right now. and even if it is rare, it's gonna be a lot less so than it was 5 years ago as certain respiratory infections are known to trigger it into visibility. that's what happened to me when I got mono at the end of 2015, further compounded when I got covid in 2022.)

all chronically ill people face a lot of hurdles when it comes to seeking diagnosis, accommodation, and treatment (all of which can be severely complicated by any intersecting marginalities), but rare diseases present a special challenge.

for example, I have an immune disorder. my immune system does not like being alive, my mast cells are way too jumpy and throw a tantrum over every little thing. you'd think an immunologist would be the one to treat me, right?

I've had 6 immunology referrals rejected in the past 9 months alone. multiple major immunology clinics in my major city tied to a major research university outright refuse to see patients with "mcas" written anywhere in their chart.

after 8 years of being debilitatingly ill, and suspecting it was immune mediated for 6, and getting it confirmed beyond a shadow of a doubt by the bone marrow biopsy last month, I will have my second ever appointment with an immunologist. another 2 1/2 months from now. the first immunologist lied to me about the reliability of the one available blood test, when I first came up with the hypothesis by myself 6 years ago, and forced me to abandon my (correct!!! now proven!!!) hypothesis for 3 entire years while we wandered around lost and got nowhere other than even more thorough process of elimination.

okay, well if my immune system is attacking me, maybe it's technically autoimmune? that's the rheumatologists instead of the immunologists, what do they have to say? dick all my dude, I don't have rheumatoid arthritis so they just shrug at me and go "idk, fibro? I don't know why you're here" and send me home with nothing. (I literally had a rheumatologist say to me, verbatim, "I don't know why you're here." buddy it's your job to read the chart and decide if I get seen or not, you tell me. at least he had a snazzy outfit.)

being chronically ill can be a terrible struggle no matter what, but a disease that is perceived as rare, accurate or not, adds a whole new layer of bullshit. (and of course there are much much rarer diseases out there, with even more hoops and dead ends and struggles and all-new layers of bullshit that even I don't have to deal with!)

anyway I'm having a shit time and using this awareness day as an excuse to productively bitch about it 👍

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dreamofmetoday · 1 year

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PICK A CARD #1: WHAT DO PEOPLE THINK OF YOU

this is to tell you what common impression you give most people 💖

how to participate:

ask yourself, “what do people think of me?” and “how do people see me?”

choose the photo you feel most drawn to.

take as long as you need to choose, you can check more than one if you feel drawn to do so. however, if you are having trouble feeling called to any then this pick a card is not for you. these readings will be honest.

tip jar

1. people think you are shy and distant, that you have trouble standing up for yourself and that you hang back and stay invisible while other people shine. people will suspect that you act in underhanded ways to compensate for how you can’t stand up for yourself - manipulating others, acting smarter than you are, copying others to try and seem more appealing. they think you are giving and patient with others but work best behind the scenes and that you could be suited to teaching and guiding others in a quiet way. they think you hide your emotions, have deep thoughts and prefer to do solo activities.

2. people think you lack real direction in life, that you prefer to go wherever life takes you and that you are not stable. they think you are restless and that it causes you to act agitated, frustrated, strung out and even argumentative. they think you worry a lot and that you focus too much on missing out on things or focusing on what you don’t have and not appreciating what you do. despite the chaotic nature of your energy, people think you always land on your feet and have the energy and skill to keep yourself afloat. people think you keep many secrets and don’t trust your stories, believing that you lie a lot. they think you’re afraid to be alone.

3. people think you are magnetic, well put together and likely physically attractive. they think you rely on praise a bit too much for your own good and that you may not be as confident as you try to portray or wish to be. people think you are talented or pick up on things easier than others. they also think you have a good sense of timing and things seem to go your way even when you don’t deserve it. people think you indulge in gossip often and don’t trust you to be honest or be loyal. they think you don’t make good romantic choices or that you are too focused on waiting to be saved romantically.

4. people think you have a big head and that you can’t see yourself clearly, that you act more arrogant and entitled than you deserve. however, people do respect that you have good leadership qualities and don’t always mind that you put yourself in the position to be the boss, trusting that you will at least try to be fair when you feel you are being treated correctly. people fear your anger, thinking you are easy to get along with and then all of a sudden your mood switches and you are too angry - a volcano randomly erupting. they think you have good social skills and people may open up to you randomly and confide in you, but at the same time they think you are also cold and can become mean.

5. people usually like you easily, finding you warm, charming and approachable. people think you are a good conversationalist, a good listener and think you have high emotional intelligence. people think you are generous, giving and patient. they think you are good at being considerate and people often want to confide in you and think they can trust you. however, people also see you as slightly arrogant and self-centred and that you kind of wait for others and the world to come to you, that you don’t make the effort to be proactive and go after people or things yourself (that you can be lazy and lack purpose). people will also think that you can be fake and that you change your personality to fit certain situations or that you tell people want they want to hear and not what you really feel or think.

6. people think you are romantic and desire this strongly. they think that you hold onto toxic things, can’t let go of what’s not working and that you don’t stand for anything real. but at the same time, people think that you are never satisfied and always searching for greener grass - that you complain and self-victimise. people respect that you try and be empowered but think that you go about it in a way that lacks humility and integrity - that your “boundaries and standards” are sometimes just created in an attempt to get people to cater to you. people think you are anxious to please people you admire and can be overly loyal to them. people think you have trouble seeing things clearly and also think you are indecisive.

7. people think you are highly resilient and clever. people see you as someone who cannot be taken down easily and that you’re very switched on and street smart. people see you as highly loyal, responsible and dependable and think you easily connect to others and inspire trust in other people. people also think you have a childlike, playful and innocent quality so they are not walking on eggshells around you, but at the same time they find you judgmental, serious and think you have the ability to be very cruel. people think you are observant and know many secrets about people. you’re seen as heavily burdened but that it could also be your fault to an extent, this makes you also seen as a bit closed off and people think you prefer keeping to yourself.

8. people see you as very dramatic and that you “always have something going on”. people think you complain a lot, that you are depressive and mentally weak. they think you daydream about a better life but don’t really put action into it. people think you’re insecure and that you prefer to be more of a wallflower and watch people rather than participate in life. people think you lack common sense and the stuff you say seems very ungrounded. people think you prefer focusing on creative activities in your spare time and assume you may be into art, writing or consuming a lot of media.

9. people think you are someone who is very anxious and overthinks. people think that you easily get yourself into a rut and have periods of very low self-esteem and drive but that you manage to pull yourself out of it and make sure you get done what needs to get done - people see you as very up and down and unbalanced. people also think you don’t know what you want and you seem lost. people think you’re very secretive and that you are shy, nerdy and studious. people think you are not stubborn or arrogant and that you remain open to listening and learning. they also think you’re messy, don’t do chores and that you’re also likely unkempt.

10. people think you are a go-getter and that you don’t let life pass you by, that you take it upon yourself to earn money or create solid foundations to expand upon and that you can be a rock in others’ lives too - that others depend on you. people think you are a good worker but sometimes ruthless and amoral. however, people often believe you have your heart in the right place and that you have a lot of people you care about. people think you have a naive and unpredictable side, that you are attracted to “bad” things and have a tendency to indulge in things or people that could result in harmful consequences later (without thinking it all through properly). people think that you try hard to be the bigger person but that you only do it to be praised for being the bigger person and not out of true care for others or the situation.

11. people think you are always running away from problems, when things get tough (especially romantically) you just leave and start over and don’t see things through - you can’t settle in one place. people see you as fake happy and that your joy and positivity is a mask for deeper sadness. people think you are lonely and that you enjoy searching for answers and deeper meaning in things and hate superficiality - people may think you’re into things such as tarot and astrology and take it seriously, hoping it will give you all the answers.

12. people assume you have been hardened a bit by life but they think that you are generous, giving and wise (that you truly try to learn from your experiences). people believe that you are giving in an honest and true way and that you do it because you are a good person, but people think you can be overly submissive and that people try to take advantage of you - especially romantically or in the sense that people will sleep with you and then leave you after having gotten what they wanted because you overestimated them. people think your boundaries and standards are unclear and you don’t know when to give more and when to give up. people think you’re pretty emotional. people think you’re a bit awkward and have trouble maintaining a stable sense of identity (that you don't really know yourself).

#pick a card #pick a pile #tarot #tarotblr #melody tarot #pac #what do people think of you #how do people see you #please reblog if you appreciated this pac 💖#also if you're curious and don't know the person in the photos is the model #jung hoyeon #also please remember these are honest! please don't feel the need to participate #anyway...#thank you for reading i hope to do more pick a cards in the future so let me know what type of questions you'd want answered #sorry about tumblr photo quality too 😅

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