Invisible Illness
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Ikenna: I remember Several episodes ago, we were like, we're going to talk about chronic pain and invisible illness in a future episode, because we were talking about. People needing specific proof to,
Safrianna: oh, like you need proof to treat
Ikenna: someone well, yeah. Like in order for someone to advocate or request certain needs. People will only be like, oh, that makes sense. Or you sure I'll do that? If you're like, hi, I'd like this because I'm suffering from PTSD or I'm suffering from this, that or the other. And it forces us to have to out ourselves. Everyone experiences life differently and has different needs. And if it's something that you can respect in the moment, like not yelling, not making loud noises.
Safrianna: Well, I feel like you just summarized the whole episode. Bam.
Ikenna: I feel like I have the experience based off of a cognitive neurodivergence standpoint, but you have the physical aspect of chronic stuff.
So like what's your relationship been with chronic illness? Let's start there. Has it changed over the years? You didn't get your fibro diagnosis until a few years ago, but you've been living with it for a long time.
Safrianna: In talking about chronic illness, I want to start with an important side note from a therapeutic lens that there are some theories that the body may manifest certain symptoms or pain points, et cetera, based on external traumas as the body and mind are trying to make sense of what's happening in the environment.
And there's a similar theory with allergies as well, that if you are going through a traumatic event and you happen to be consuming particular types of food around that time that the body may attack through histamines, trying to target something to fight back.
So my personal journey with illness, like physical ailments started really young. And my traumas started for me around the age of three. I was diagnosed with asthma really young. I don't remember exactly cause I was also dissociated, migraines, and IBS. Then fibromyalgia. Those are the major diagnoses. And of course, almost all of those aside from asthma are ones that we can never pinpoint the culprit for what's causing them. IBS, who knows?
Right? Like we know that it can be stress-induced and anxiety can cause flare ups and things like that. But origin point, like doctors kind of shrug at it. They're like, yeah, you, you have IBS. Cause we can't pinpoint of physical reason for this happening. And there's meds you can take in the moment. That's about it.
Same with fibromyalgia. As we explored in other episodes the fact is that a lot of these things are invisible and you might have no idea that someone is experiencing it.
I have experienced having to out myself to explain why. I was dating a guy and we were in a long distance relationship. We were, I think only like two weeks in to the actual relationship, but we'd known each other for years and had been like crushing on each other for years, supposedly.
He mentioned cause he was military, "When I get back to the states, I'd like to do a road trip with you." And I really liked that idea, but road trips are really hard for me. Right. The conversation went on and he kind of pushed for more information. I had mentioned accommodations, like I just need to be able to stop every couple of hours or mainly to stop suddenly. I prefer not to be driving all day. I would like to break it up and stay the night places, things like that. And so he pushed for a lot of information and I revealed that I had IBS and anxiety and that those two exacerbated one another at times, and that I had particular trauma around roadtrips. So I was worried that I would likely have a flare up. And what I needed from a potential partner of course, was to be met with compassion in that. And instead we broke up within the next two weeks because he immediately distanced himself. I broke up with him cause it was like, I don't really like how you're treating me after learning that I have a diagnosis.
Ikenna: Yeah. I mean, interesting because he might've been processing it, but he didn't just want to outright say. Maybe he was uncomfortable with it or that's the thing that wouldn't work for his lifestyle. Cause there are some people that, you know, there are some diagnoses that if you have a particular vision for what your life with your partner will look like, if there's certain things that you will not compromise for than like, if you were wanting them to be the same level of intestinal stability
Safrianna: Intestinal fortitude. My constitution score is low, okay?
Ikenna: Yeah. Well, intestinal fortitude. Well anyway,
Safrianna: Now I have a partner, not you, but another partner with equally low intestinal fortitude. So we'd get each other. Other. Other.
Ikenna: Yes. But the thing is that guy kind of distance himself from you without really saying his discomfort around it. And, you know, in the end it would just make more sense to just be like, "I need someone to be able to do long road trips with me without having to stop all the time. And that's just what I need in a partner" or something.
Safrianna: Yeah. Yeah.
Which I totally would have respected. And I, like, I think I more or less said that, I understand if that's not something that you want to have to deal with on a trip. And I stated, I gave him an out, but he wouldn't take it.
Ikenna: Yeah.
Safrianna: I really want to invite people to, to find this middle line of accepting people's needs and requests for where again, for whatever reason, regardless of whether or not they know the exact reason why they need that.
Ikenna: Right. do we pry because we need to have that proof? Do we pry because we have this fear that they might have this diagnosis that we didn't realize we were scared of people having. It's interesting to kind of question yourself in those moments of when someone request that you don't do that. Does your mind go to, "I wonder what diagnosis they have in order for them to request this?" Human nature, we hate ambiguity.
Safrianna: We hate the uncertain.
Ikenna: Yeah. So if it's like, there's not a reason for it, then we're just going to either ask for more information or we're going to assume things and fill in the blanks ourselves to try to alleviate our own distress over the ambiguous,
Safrianna: I've never met a person that did not have some form of a health problem. Like you are one of the most physically fit people that I've ever known. You played sports all through high school and were very active and like going to the gym, like you've liked going to the gym, but you have health problems. You have heart problems. We all have some kind of health problem, whether it is physical or mental or some kind of wiring somewhere in the body, right. Where something is not quote unquote. Perfect. None of us are perfect.
Ikenna: Yeah. And there's a lot of things that we realize we need, Whether it be for physical reasons or for cognitive emotional reasons, like there are things that'll happen. I think we've talked about this too. Birth is traumatic. Birth is traumatic for everyone in some way or another,
Safrianna: you emerge from the darkness into the light of the world.
Ikenna: So it's like, whatever people might've experienced in that to cause psychosomatic issues to occur in the future attachment disorders to arise based off of how much skin is skin contact. You, you know, it's like all of this different stuff that can affect us that we might not necessarily be conscious of
"Oh, this is like, I struggle with this because of this thing that happened on April 15th, 1997", like you're not going to, and again, this goes back to the cycle of like, we don't like ambiguity. I especially am guilty of that. And I'll intellectualize the shit out of why I'm struggling with distress.
I'll be like before I can really hold my distress. In my body and validate it and, and accept it and let it like flow through me. I first need to know why the fuck it decided to exist. And then it just stays there because it's like, "Why are you trying to prove why I'm trying to be there? I just need you to hold me internally" essentially.
Safrianna: That desire to know, I think comes from our desire to fix, because we have such a perception of being broken. Like my body has tried so hard to protect me, like my theoretical orientation. In terms of being a parts therapist. Like I firmly believe that my fibromyalgia comes from heart and I'm not saying that this is going to be everybody else's experience.
So please don't take this as medical advice. But for me, I believe my fibromyalgia is part of me that was so used to being hurt in body-based way that I developed a defense mechanism of, if you touch me, I am going to ouch. Right? Like if you put a hand on me, I'm going to wince and that response did deter at times, future, or like in the moment, things that could have gone farther.
Right. Because my body would respond.
Ikenna: Even if you would just say no, If you weren't wincing, they weren't taking that as a yeah.
Safrianna: So, and obviously there were times that, that that was not the case and it happened anyway, but my body was trying so hard to protect me and that response and with chronic illness, I feel like if we were able to perceive.
Any, and all, you know, I like to call it wiring. Yeah, wiring errors because you know, some of us are, are born, missing body parts. Some of us are born with brain hardwire difference. Some of us are naturally inclined to certain things and not based on our genes, like there's so many wiring differences that lead to all kinds of little error codes or uncomfortable, but.
Some of them are never going to be able to be fully fixed. We can find adaptive solutions, but the biggest thing is learning to accept what's there and hold space for it without having to fix it because the striving to fix it or avoid it leads to more pain.
Ikenna: Yeah. And that's.
That's the, you know, generationally, if you have a situation where you recognize this need to fix, because parent, care giver, teacher noticed you in distress and their first responses were something along the lines of what's wrong. So like figuring out what the symptom is so they can fix it or. Don't cry.
You're okay. They're perceiving your, your truth for you and are like, "Hello, this is what's actually, I can see that it's, it's safe for you. So why are you so upset?" and that can be hard as a, as a parent or anyone who's observing someone being in distress.
Safrianna: You shared a great metaphor the other day that I think would be really relevant to share here.
Ikenna: Oh yeah. Yeah, one of my, one of my clients like inspired me to have this metaphor because perception is, is definitely weird when you are experiencing the same situation and two people are having different reactions. So let's say you and a friend were walking through a forest. And you come across this big bug of some kind.
Yeah. Heck chonky bug.
Safrianna: Juicy.
Oh, gross. You know and the bug walks across your path and your friend picks it up and is like or you pick it up, like you pick it up and you're like playing around with it. And your friend is freaking out. Freaking out the bug isn't hurting any of you, you know, the bug is like poisonous and isn't going to harm anyone.
And it's just you know, this is going to crawl on you and, and whatever you think is a cute little cute little bug. And you're like trying to show it to your friend because you're like, this is so cool. Like "Be exci-, like you're safe, it's fine." Whatever. And they're like not having it. And you interpret it as like, Rejection or like you interpret their reaction to be internalized with you as a person.
Like you didn't convince them that this bug was safe. So therefore you fail as a friend, like all of these different internalizations that we create that we pound on our self-worth will then make us get defensive and invalidate the other person's experience.
Safrianna: Yes.
Ikenna: Even though we don't understand why that person is scared of that bug or bugs in general. We, it's not our job to convince them otherwise.
Safrianna: Right. Our job is to work on our own inner healing and I'm pulling up a social media post cause I want to read it. And then I want to read my interpretation because I had a different interpretation than somebody that left a comment on the post. And I think it's kind of relevant here when we're talking about the fact that illness in many cases is chronic and we need to learn to accept rather than try to fix. Right. It's it's so interesting. When we accept anxiety is a part of being human, right?
And we open ourselves to anxiety being potential information that we can just sort of tune into and be gentle around. That's healing. We're healing. We're literally repairing the relationship between us and that anxious part in the moment by being gentle with it versus healing doesn't happen. When we continue to buy into the story and we run with it.
Ikenna: and this is why, so people have different opinions and ideas based off of a medication.
And I'll disclose that, you know, I'm medicated for anxiety. But it was not necessarily to fix my anxiety. It was because my anxiety had reached a leve that was so high above a threshold of being able to even get into that aspect of acceptance that I would just ruminate and continue to try to fix, like my anxiety would try to fix itself and it would get very confusing for me.
So it's like, so again, with, in terms of medication, we don't, I'm not against it, but I never, I never want people to think like, I want my anxiety to go away.
So here's a pill.
Safrianna: Yeah. Well, I mean, medication doesn't always cure anything. Like it can cover things up or mask things or give us more capacity to deal with something.
And yeah, we're definitely by no means saying don't get medical treatment or anything like that. You know, if you. I have like an awful cancer diagnosis or, you know, somebody who has an awful cancer diagnosis. When I say a healed person accepts versus an unhealed person might be striving fix or being fear.
Like I'm not saying you heal your cancer by accepting that you have cancer, right? You, you potentially can heal your cancer by taking steps, to use medical interventions and change your diet. And you. You know, your vitamins that you're taking and maybe you find a good strain of cannabis to assist through some of the side effects or whatnot, but the healing moments are when you say, even though I have this awful thing happening to me, like I'm going to
be okay in myself with that and not beat myself up for decisions I made in the past or things I might have done to cause this rural, like all the stories.
Ikenna: Yeah. Because there is a lot of blame because, you know, in terms of cancer treatment, people will be like, oh, smoking causes cancer in the lungs, in the mouth.
And you know, these areas or you know, cancer is a terrible diagnosis. That'll cause people to be. Looking for a place to blame, whether it be yourself or someone else like, "Oh, I was exposed to secondhand smoke as a child. So that development of cancer" or something like that, which can kind of sometimes again with our, our dislike for ambiguity can cause some sort of closure.
But at the same time, if it's based off of something that we might, we might have done to ourselves it's also a. You know, the first thing you would need to do is work on forgiving yourself.
Safrianna: Yeah. And so this post that I posted, which I can see upon reading, and again, why people could misinterpret the intention behind.
Comes from positivity, sparks.com and the author is unknown, but the quote is "An unhealed person can find offense in pretty much anything someone does, a healed person understands that the actions of others has absolutely nothing to do with them each day. You get to decide which one you will be." And a person commented saying like, do you get to decide, are you saying we get to decide whether we're healed or.
And I responded basically that I think healing and being healed as a process of repetitive action and a repetitive state of inviting ourselves to be in the energy of healing. Yeah, I don't think healing's ever fully finished. Right. And I think it happens in like flashes and moments, but we know that we're healing we're healed or experiencing healing about a given thing.
When we can trip over a trigger and still land back in the choice, not to be ourselves or someone else up in the moment. And then I kind of sat back and thought about it more. And I said the baseline definition of healing to me. Is reaching a state of awareness that we are all individual and yet the same that our universal collective healing can only happen when all of us are healed.
And that is, you know, in a, in a moment when someone says unkind words towards us, or take violent action, they're acting out of fear, self-loathing judgment, shame or hurt, and they're lashing out to protect themselves and her others in the process. But when we are in a state of awareness about our own inherent worth We're in that state of universal compassion and one planet, one power mindset. Then we don't have to take those words and actions personally, as meaning something bad about. So when we're no longer hooked into other people's stories, we can decide to embrace those unhealed parts of us that are triggered with more ease and gentleness.
And in those moments of compassionate capacity for all of ourselves and all of our fellow beings, we're experiencing a moment of healing. So I think the difference between being an unhealed and a healed person is just being willing to be in the process of healing. If you are resistant to healing, You're unhealed.
You're not able to step into the awareness of those moments and we've all been there. We've all been in an unhealed state where we cannot accept the actions that we would need to take to heal.
Ikenna: Yeah. And it's, have you ever find yourself in a place where you are reaching out to people to find interventions, to help you, or you're looking up self-help things or you're trying your very best to figure out what it is that might help, like looking up just different things that could help you or not even in that process, but people are offering like, being like, have you tried this?
Have you tried that? You know, and you just feel like shit. And if you hear yourself, like, of course not everything works for everybody. So of course there can be like a, someone offers some sort of meditation and it just doesn't hit for you. That's fine. Like that's, I'm not saying like, if a certain intervention doesn't work for you, you're unhealed, but I'm more saying like, if you're noticing that pattern that every possible thing that you think of that could be a step towards healing and you immediately find resistance to that. That can be a sign that you are, that there's like a sense of fear around being a healed person, because stepping into those moments of healing is not... It is not necessarily easy.
Like there's, there's well, it's definitely not easy. Cause there's a lot of things that our bodies have done to protect us. And our mind has done to protect us that has given us our own little homeostasis. And when I say homeostasis, I don't mean euphoria. Homeostasis is just as considered like your normal and your normal can be your own personal hell.
Safrianna: Right?
Ikenna: So when our body's in a homeostasis pattern of our own personal hell, the concept of stepping out of that homeostasis is fucking scary.
Safrianna: Oh, it's terrifying
Ikenna: because it's like, even if there's this potential of being a healed person, Stepping out of the homeostasis is stepping out into the unknown and again, full circle, unknown shit for humans is something that we really don't like doing.
You know, we like to be as prepared as possible. And so if we already know what's going on in our little hellscape of homeostasis, that we're more likely to kind of resist the concepts of stepping out.
Safrianna: Yes. And we don't know what we will gain in the unknown. We only know what we're going to lose by stepping out of our norm.
What we're going to lose is not always...we're not always going to lose something that feels right. We might be losing an abuse pattern, or we might be losing self neglect, or we might be losing a relationship that isn't contributing positively. But in that process of stepping out of the cycle of being in that homeostasis, we get to decide.
Yeah, what we want to invite in. It's really funny that you brought up that resistance ease. Like, did you read my blog? I don't think you did. Cause I don't think I told you I posted a blog.
Ikenna: I don't think you told me now, but it's the lesbian mind meld
Safrianna: the lesbian mind meld cause I literally was writing about this last night that I was observing my own cycles and sort of the universal human cycle around discomfort.
So as we've talked about this episode, Other people's discomfort with our discomfort; our discomfort with our own issues our own programming, anything that you can have this comfort around really as observing the cycle of resistance being the beginning to healing. Because when you become aware that there's resistance, that something needs healed, that's longing to be healed, but you're afraid, right?
You're still in your fearful parts or your anxious parts around it. That's still you stepping into the willingness to heal because you're noticing that there's resistance. So it's like the very beginning of the story.
Ikenna: Yeah.
Safrianna: And then you get to follow through to the end. And, you know, we all have our hero journeys around...
We have many of them through our lives with the different problems that we deal with and obstacles that come up. But the cycle is normally for people in, in homeostasis, I guess, as you're describing it is discomfort; try to avoid the discomfort; deny the discomfort and self neglect. And then the pain and discomfort actually gets worse.
And then we shut down.
And then when we come out of the shutdown, we're uncomfortable again. And the cycle repeats. So where we get to break that is if we notice the discomfort, we can tune in, get curious about it, be compassionate towards it, tune in, and actually like figure out what the needs of that part are.
And then. Achieve balance again, once we meet the needs. So we have opportunities to step off of our, our own cycles. Even our mental relationship with things like chronic illness. Like I'm probably never going to live without body pain. Yeah. I have accepted. And I know that I can, I can absolutely do things to support it.
I can go float. I can take you know, cannabis on bad days or Tylenol if it's a really bad day. Well, ibuprofen, I guess, you know, all the memes with the chronic pain and then the doctor slaps on the 800 milligram ibuprofen prescription. That's every chronic pain-er's life. I feel like. Yeah, but
like, and
Ikenna: they're called, well, the, people who I know are they're called spoonies.
People who have chronic pain is it's a, it's a community of people who are, who deal with chronic pain and invisible illness. So if you relate to anything that we're talking about, Chronic pain and chronic illness and you haven't heard of the spoonie community. Yet I highly recommend that you look into them because they are very understanding
Safrianna: yes.
And spoon theories. Great. And I'm assuming that has come from, but again, like when I can accept that I may have limitations that day. Like let's say I wake up and I am at a one out of five energy level. And I can be as low as zero, but like, let's say I'm at a one I can push through that one and try and achieve like I'm a three, but then I'm going to burn out and probably be a zero tomorrow, or I can say, okay, what are my bare minimums for the day?
And be gentle with myself around just doing my bare minimums and be in a state of acceptance rather than trying to immediately fix that. I'm at a one by. Chugging a coffee or taking a cold shower or, you know, eating an energy bar or whatever. So I think that acceptance is the biggest thing
and yeah,
Ikenna: I mean, I'm finishing up grad school right now and I'm in some, I'm experiencing some burnout and just stress in general over the final things that are due.
And I'm. Just, I noticed over the past couple of days that there was a day or two where the burnout was just so significant,
Safrianna: they were just kind of like laying everywhere in their spare time.
Ikenna: I was just cranky and I was, so it was cranky that I, you know, I wasn't really allowing myself to fully accept my discomfort and burnout because I was, my anxiety was like, look at all these things that you haven't, you're not getting done right now. And I'm like, okay, I get that. But if I was you talking about the pushing 1 to a 3 reminded me of me thinking about this is what allowed me to accept my burnout. I was like, If like I would like for two or three of my days, this week to be where I have a little bit more energy, because I'm not completely burnt out.
And I'm like, I'm probably not going to get a lot of stuff done today, even if I tried my hardest. So I might as well just lean into this rest period. And. Hopefully that'll allow me to kind of gain more energy and motivation later in the week. And it did it like, I'm not saying it's always going to work out that way, but me not pushing myself to try to be a three or four the whole day.
I was like, I'm going to do this bare minimum task. I'm going to accept the fact that I'm cranky. And it was great because Safrianna would be like you know, due to her past trauma, sometimes seeing me cranky will be like, is it me. And I'll be like, no, no, no, I'm just, I'm just a crab.
Safrianna: I take a big deep breath.
Ikenna: Yeah.
Safrianna: Which is hard.
That's hard because yeah, because you want, you want to be, *Sings* "you want to be their hero, baby." You want to be that person. And sooth their discomfort. That song is a lie by the way.
Safrianna: And this is, oh man, there's a whole episode where we will deep dive, pop song lyrics, and how they contribute to attachment culture.
in a very toxic way.
Ikenna: Yes. And monogamy culture wholly can do a whole mini series on
that. Yup. Yup. You asked a 10 minute rant about a song.
Yeah, listen to it. I like that. I like how we're keeping it to 10 minutes. Cause I feel like that could tangentially get to a point.
Safrianna: Those are, you know, we find a song and we run into the closet
just a 10 minute romp
in the closet with a microphone
Ikenna: 10 minute. Rump?
Safrianna: Romp R O M P
Ikenna: a 10 minute. Rump is what I heard. Like what's
around It's a butt.
Safrianna: Yeah, I guess you're right. 10 minutes, but in the closet. Yep.
Ikenna: Anyway, but yes, so. Yeah, this was it's always, it's always nice to have these conversations because we're like, here's the topic. And then we are like, I don't know exactly how to start it. And then we do, and then we're like, oh wait, connections. And then
Safrianna: interconnected. That's true. And playing around with an idea for a community around that.
Ikenna: Yeah, this is not a community that's already started.
Safrianna: Well, yeah, but like a subgroup, like a deep dive cohort, thinking of calling in light weavers of the web.
Ikenna: Wow. That's cool. Anyway, but we should probably end this episode cause we haven't actually said. In any of the episodes yet, but if you are interested in joining our Patreon or discord, no, we did it a few episodes ago, but Patreon or discord, or we have a Facebook group, which is attached to our Facebook page.
So it's like there's living Luna the page, the page, and then living Luna FB group. It's FB circle B circle. Yeah. That you can join and yeah, we post different prompts that are similar to this. So if you have. Things that you've had thoughts about in terms of our episodes. Most of the time we post things that are related to these episode topics.
And you can post your own stuff on there. If you're like, hello, I have a question.
Safrianna: As long as you are not being a jerk. Yeah. That's the big rule. Don't be a jerk. Yep.
And open and understanding. Yeah. No judge. Other people's experiences.
Living Luna, loving unashamed and normalizing authenticity.
Ikenna: You said it right this time. I'm so proud.
Safrianna: I have been searing it into my brain practicing.
Both: Byeeeee
