Creating Your Sanctuary
How to create a space that supports those with chronic illnesses, ADHD, autism, neurodivergence and/or other sensitivities.
Creating Your Sanctuary
You Deserve More
When it comes to dealing with medial professionals, everyone deserves the best care possible. Have you left any medical appointments feeling you weren't treated with respect?
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00:01 Hi, this is Katie and thank you for joining me on the My Senses, My Space podcast. A podcast about how you pay attention to your needs and create space for fulfilling those needs and taking care of yourself.
00:18 So today I wanted to talk about why you deserve more, and it's kind of a nebulous title, but what I really wanted to hone in on today was about experiences with dealing with medical professionals and how important it is to get the best support that you deserve.
00:42 I mean, everyone deserves the best support. I'm not saying anyone deserves any less or more, but many of my experiences over the last year have been, a lot of them have been really good with multiple diagnoses and digging in deeper into my physical stuff and getting therapy that I need.
01:07 But I did have a recent experience this last week that left me in tears, <laugh>. It was a professional I had seen many, many times over the years.
01:20 I think I had been seeing her for about 10 years. It was my ob gyn from, you know, actually I switched to her after giving birth to my son.
01:31 And I always found that she was very caring and had this great dry sense of wit, but so many times I left the office in tears.
01:43 And that's for different reasons. I mean, one time it was the pain of having an i u d inserted. So, yeah, you're gonna be upset.
01:53 And I have a lot of childhood trauma that I'm trying to balance out with getting care. And so there are certain things that trigger my safety responses and that was one of them.
02:10 And so, yeah, but I thought, oh wow, she's like super supportive and there for me, and understanding. And I think for the most part, yes, but when I had my last experience this last week I realized I was rushed through.
02:28 I wasn't listened to and was not treated well. And I talked to multiple people after this and they're like, wow, <laugh> very much dismissed.
02:42 So, and I, I definitely had a lot of feelings come up about that. So it was, you know, I got in pretty much on time.
02:53 But there were certain things that, you know like my, my blood pressure reading wasn't accurate because it is not normally that low in a, in a setting like that.
03:07 I probably in the moment should have asked for it to be done again. But I don't think it would've been different.
03:13 I think something else was going on there. And not that it was malicious in any way, I think it was really something that was being overlooked because of something else somebody else was going through.
03:29 And then when I got to speak to my doctor, she, I said, you know what? I had this big emergency, you know, a couple weeks ago and I really wanna know what this is.
03:42 And she's like, yeah, I don't know. And immediately like ordered a different kind of referral that wasn't really addressing that and then was out the door.
03:55 Like it was, I understood it was a short chatty visit. It wasn't anything there, but I did expect some follow up tests.
04:04 I did expect some more information handouts or just like a ways of tracking new things that are happening and none of that <laugh>.
04:17 And then by the end of it, I heard through the door your referrals on the clip are right outside the door.
04:24 And I understand it's a gynecologist's office and a lot of people are getting dressed after having exams done. And I can see how this would speed up things.
04:35 But both of the people who had just been in that room literally five minutes earlier, if not less, knew I wasn't having that.
04:44 And so I thought that they were speak, that the person clipping up the referral was speaking to the doctor so she could hand it to me.
04:56 I sat in that room for another few minutes, I'm like, I don't know if that was for me or not, but I'm just gonna sit here.
05:03 And my neurodivergent brain kind of went into overthinking and <laugh>. I was like, I don't know, but the safest thing to do is just wait.
05:15 I guess it, I was in a safety, like, is this safe or not? Kind of a, a mode because of what had just kind of happened.
05:23 I was just not feeling the safest emotionally not feeling emotionally supported in that situation. And so I was just kind of in shock and then opened the door and saw a referral clip there, looked down the hallway and everyone was gone.
05:40 Granted this was right around noon to 1230 and I guess everyone went to lunch, so <laugh> and I just left and went into my car and cried, you know, but fortunately I, fortunately I came home.
06:01 My husband was so understanding, I, I cried my eyes out to him too because I knew this wasn't the way I should have been handled.
06:11 I knew that this was not the experience that I deserved, that there was a whole lot more. And I had had this notion of it's time to find another gynecologist.
06:25 And so after talking with my husband, getting emotional support there, I was able to go, you know what? It's time I'm making a new appointment.
06:38 Cuz I had tried several times before that and everyone was so booked out and I couldn't get into anywhere. It's part of everyone coming back from the pandemic and finally getting a lot of things addressed.
06:52 So I know there's a lot of wait times on a lot of things, but right after I hung up making my new appointment, I felt so empowered.
07:03 I felt so empowered that I took action in that moment saying, okay, this is a low point, a really low point I'm feeling right now.
07:12 And feeling unheard, not understood not validated in what my experience was. I even asked, how can I prevent this in the future?
07:23 There was nothing as in the emergency visit that I had. What can I do? What can I do? I don't wanna keep running to the emergency room.
07:37 So having that next appointment felt amazing and talking with a receptionist saying, you know what? This is the person that you need if you're thinking about this route.
07:50 So feeling like I'm gonna connect to someone who really can start understanding and digging into this part of all my health stuff.
08:01 <laugh>, there's so many things going on. And yeah, I, I then reflected back on many other previous experiences about you know, going to specialists, especially seeing the specialists I've had multiple times where they know that this very small procedure is very routine.
08:26 They probably do 10 of them a day, they come in, they don't explain a word or a single aspect of what's going on.
08:36 And I am practicing like stopping people and saying, you need to explain to me every single step because my neuro divergent brain needs that information to know what to expect.
08:51 In the two previous examples I can just vividly imagine right now it was like an e n t and they were like numbing the back of my nose and throat area and putting a scope in there and checking, not a word uttered to me about like I didn't really know what was going on.
09:10 And <laugh>, I very much panic when anything is kind of numb in my throat or nasal passages or anything. And yeah, went out to my car and just tried to calm down from a panic attack.
09:29 And then another one being just, they were looking at a tooth issue I had and I went in and the tech was very trauma aware.
09:41 She was saying, okay, you tell me when you're ready, which is exactly how you should approach someone who is dealing with trauma and say, okay, you tell me when you are ready for this next step.
09:56 So empowering to the person experiencing it. And then the specialist came in and they immediately started doing something that I had no idea what was happening and it brought extreme pain all of a sudden.
10:10 And yeah, and I, I wrote a complaint letter <laugh> to that person specifically. And so gathering all this information and also thinking about the, like the long term of how many times I've gone into an office and being a fat person and going in and having assumptions made that if I lost weight that
10:38 would cure everything. If I had any of these ailments, it was because of this and because I was a woman or because of other things.
10:51 Like there's so many different things that I felt put in a box and say, well, we're just gonna gloss over that because first many times if it's a person with different anatomy than me, they are not going to understand.
11:07 And so very much from the beginning I ask for someone who has a uterus, like I need someone to understand that.
11:16 And I've found that I have much better care and I definitely would recommend even if you don't have a uterus, like finding someone who has similar biology, if that brings you support, if that helps people bridge the understanding of like, this is what I'm going through.
11:42 It can help because that it means that that person has experienced it. And so I really wonder in other cases where they've never gone through their own procedures, they've never understood like really what it is to go through that process.
12:01 I really question like, Hey, are you gonna really fully understand my needs? And then if they can't provide that for you, moving to someone else I went to a cardiologist that, you know, I was having these panic attacks, but I wanted to see if something else was going on.
12:20 She immediately put me on aspirin thinking that I had a problem and ex ordered these expensive tests that I really couldn't afford.
12:32 And so I'm like, hold up, you know, I left there after like my head's spinning and months later when I saw my second cardiologist, cuz I did not trust what she was putting me through, she's like, you're coming off the aspirin right now because that is dangerous for your condition.
12:51 I don't know why they, she put you on that and we're gonna order this much smaller test that will do a very thorough look and we'll take a look at that then.
13:04 And yeah, everything turned out just fine. So <laugh>, it's really hard. I know a lot of professionals can be guessing, but I do not wanna be the patient who you are guessing about.
13:20 I that's not what I'm here for. I need you to say like, I don't know, but let's look into these other options.
13:29 Let's track what's going on. Let me talk to other people. Let me connect with other specialists that may be a better fit for this.
13:39 It's okay for doctors and and professionals to say, I don't know because they don't know everything and science doesn't know everything.
13:52 So, and I sigh at the end of this because it's tiring. It's really tiring and I know so, so many people, especially those with chronic illnesses out there who are going through similar things, they'll see someone over and over again with no luck and no advancement in their support that and I'm not
14:18 even gonna get started on health insurance companies cuz that's a whole different thing. I'm just talking like right now, how do you advocate for yourself?
14:28 How do you go into a meeting with someone and also knowing if you're neurodivergent as well how like them info dumping onto you can be really hard for you to absorb everything.
14:49 So like really very much read up on the doctor's notes that they send back. I'm so thankful that they are starting to make that a whole lot more transparent.
14:58 I find it really interesting to look at doctor's notes because sometimes you'll see things there that they didn't even say.
15:08 Not that it's just their observations of you. I've never seen anything where it's incorrect, but I would definitely like correct them if something was wrong on there.
15:20 But it is eye-opening to see how they're viewing you and how they're viewing your issues and what you should be taking the next steps on when it's actually you that should be gathering all the information possible and you take the next steps that feel right.
15:40 I've had one doctor who was like, let's take everything really slowly at one thing at a time. And I thought that was great.
15:48 You know, I think that can work for certain people in certain situations. And then she couldn't be my doctor anymore.
15:55 She moved to another practice. I got a new doctor who's like, let's address all of these. Let's just go through them.
16:02 And that's actually what helped me the most. I was like, okay, rapid succession here, let's just tick these boxes off.
16:09 Let's get everything rolling. And last summer was just this summer of health of going through many different things. And now I have like a better understanding of everything.
16:24 And now I'm able to take this next step with my new gynecologist and ongoing stuff. I, I feel very much like I've built a foundation now and that's like my whole theme for this year is like standing up on that foundation and it feels so good.
16:44 So my question to you, do you feel like you're getting the support that you deserve? Are you getting the answers that you need?
16:58 Are you addressing the things that you need to right now in your life that you feel aren't right and taking them to people who you trust?
17:08 That's huge and it can take so much time and energy to find those people that you trust. It really does.
17:17 But, and I will say, and it's not a but and it's so worth it when you feel like you're on the right track and you know you're taking the actions that you need to.
17:32 So thank you for joining me on the My Senses, My Space podcast.