Palindromic Rheumatism, Comorbidities and Neurodivergence with Danielle Cudjoe Michalksi Artwork

The Sunflower Conversations

Welcome to the Sunflower Conversations, the podcast where we explore the experiences of disabled people with non-visible disabilities through the lens of the Hidden Disabilities Sunflower.

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The Sunflower Conversations

Palindromic Rheumatism, Comorbidities and Neurodivergence with Danielle Cudjoe Michalksi

February 01, 2026 • Hidden Disabilities Sunflower

Danielle is neurodivergent and lives with palindromic rheumatism, undifferentiated connective tissue disorder, endometriosis, and adenomyosis.

We hear how her conditions intersect and why comorbidities complicate care. Danielle explains fascia and its effects on her body and organs. She also clarifies what palindromic rheumatism is: during flare-ups, pain moves around the body in episodes lasting hours or months, and a defining feature is the absence of joint damage, which often delays diagnosis.

Danielle's mental health has also been affected, especially after serious problems like blood clots and lung infection.

The conversation includes practical tools, guidance on workplace flexibility, and highlights the supportive power of the Sunflower community.

For support:

If you are concerned about any of the subjects discussed in the podcast, please follow up and seek support from your healthcare practitioner.

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

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Find out more about the Sunflower by visiting the website hdsunflower.com

Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Danielle Cudjoe-Michalski podcast

Speaker Key:

CB Chantal Boyle

DCM Danielle Cudjoe-Michalski

00:00:20

Welcome to the Sunflower Conversations. My name is Chantal, and I am your host. Today, we are joined by Danielle Cudjoe-Michalski. I'm hoping that I have pronounced your surname correctly, Danielle. Have I?

DCM

Yes, you have.

Okay, great. So, Danielle is the CEO at Thinking Light Coach. I met Danielle at Naidex, which is the leading event for disability, accessibility and independent living. So, Danielle was a guest speaker on the topic of creating inclusive workspaces for neurodiverse talent. So, what are we going to talk about today? So, what we’re going to talk about today is, learn a little bit more about Danielle’s extensive health journey and learn, also, about palindromic rheumatism, as well as explore the concept of comorbidities.

So, I am going to… I normally lead with giving a visual description of myself, and I was reminiscing and reflecting on that and thought, maybe that's not polite. So, I am going to ask you, Dnielle, to give a visual description of yourself first, and then I shall go second.

DCM

Okay, thank you. So, I am a dark-skinned, Black, [unclear] woman with curly afro hair, glasses, big smile.

00:01:37

I am wearing a light top, the Sunflower lanyard, obviously, and behind me is a white wall with some of my lovely plants.

They are really lovely, for the purposes of the recording. There's a nice array of plants, and there's one that's climbing up the wall. It's really beautiful. So, thank you very much, Danielle. I am, I keep saying, in my midlife. I don't know why I'm skirting around the age. It's great to be alive, so I should actually say you what my age is. I am 50, just turned 50 this year. I am brown-skinned. I'm a lady. I'm a woman. I've got long, brown, curly hair. I've got bright-red lipstick on.

I'm wearing glasses. I have an earring in my nose and in my ears. I'm wearing a patterned, cotton top with lots of swirls on it, blue and red. I have got the white-and-green, I Support Sunflower lanyard on. So, let's begin. First of all, I think we should start at the very beginning. Please can you tell us what disabilities you have?

DCM

So, I have quite a few hidden disabilities. It's a different array, and that's what brought us together. So, I'll go in the order they came.

00:02:56

So, first, I'm neurodivergent, so I classify myself as being neurodiverse. So, I have dyslexia with traits of ADHD and dyspraxia. That's my lovely neurodivergence, and then I have two, or several, different hidden disabilities. So, I have endometriosis and adenomyosis, and I also have, what we say is, undifferentiated connective tissue disorder, which is a bit of a mouthful. And the main one that we're talking about today is palindromic rheumatism, which is one that is quite rare, and not a lot of people know about it.

Not a lot of people have heard about it, and that's why we decided to connect today, to talk about palindromic rheumatism and also comorbidities.

Thank you. And so, you're born as a neurodiverse individual. It's not something you acquire as you get older. And then the other conditions, did they all manifest at once, or was it a one-by-one? And I guess, that brings us on to comorbidities, because some people won't have heard of that phrase before.

DCM

Yes. So, comorbidities means that you have multiple differences, multiple challenges, conditions or diseases, and you're trying to actually manage them all at the same time. And it's great you're pointing out the bit about my neurodivergence because, even though I was born with it, I didn't actually get diagnosed until later on in life, which is actually quite pinnacle to the story, because I got diagnosed with dyslexia, and that's all I knew. I didn't have any other health issues. I was, kind of, an okay, health-wise, child and teen and young person.

00:04:39

And then, in my early 30s, I had quite heavy periods and was going more down the fertility and gynaecological route. I was seeing my gynaecologist, who was absolutely fantastic, and we were talking about some gynae issues that I had, because I had a laparoscopy, which is a procedure you can have, a gynaecological procedure. And I was talking to her about some aches and pains I had in my hands. My hands would be flare-up, which means they’ll get swollen and painful, but they would last maybe a couple of hours, maybe a couple of weeks.

They were really sporadic. They moved around the body. It was really weird. and I just mentioned that. And she then referred me to a rheumatologist. Now, I want to make the caveat that I was very privileged because of where I worked and because of the source I had, in terms of private healthcare, to get such a quick referral. So, I just want to make that clear to everybody. This is very unusual. I had been documenting, because this was just about coming into the digital age on digital cameras on phones. So, I'd been documenting when I had flare-ups.

And I took those photos and explained my experience to a rheumatologist who, now retired, but was an expert in her field, and I was very blessed to be having one of the best in the field. And she straightaway had diagnosed me with palindromic rheumatism. At that point, it wasn't even, in the arthritis.org organisation, categorised. There wasn't much papers about it. There wasn't any information about it.

There was a little blog that someone in the US created, back when we used to have blogs, and people from around the world would talk about their experience.

00:06:24

So, it was very, very rare and very unique, and it is a unique disease in terms of how it manifests and some of the things that happen in regards to that. Fast forwards, loads of medication, feeling quite sustainable and consistent, and then I met my husband now, and we went through our fertility journey. And during that fertility journey, I found out that I had definitely had endometriosis, which we now know is also an autoimmune condition.

But from that, I came off medication, and due to that, I was going through fertility journey. I ended up having quite a lot of flare-ups in my hands, and my palindromic rheumatism flared up again. At the end of my fertility journey, I ended up getting critically ill, and was in and out of hospital. And one of the outcomes of that was, I ended up having connective tissue disorder, undifferentiated connective tissue disorder, which is very different to palindromic rheumatism.

That impacts inflammation in the fascia and in the connective tissue, and palindromic rheumatism impacts my joints. So, I have [overtalking] inflammation. So, that's where it came to.

And you became critically ill because of the endometriosis, because you weren't able to control it with your medication, or…?

DCM

It was a combination of things. So, I wouldn't have known my endometriosis if I hadn't come off my medication for my palindromic rheumatism to try and go through my fertility. So, everything happens for a reason, right?

00:08:04

And then, because of that fertility, I was going on a lot of hormones. In the beginning, I felt amazing, but we were in the middle of COVID, and there was a lot of restrictions and a lot of delays with travel. And I was having treatment outside of the UK, and it caused for me to have some complications that caused me to have DVT, which, I now have had multiple times. And also, my connective tissue disorder with my palindromic rheumatism, because it’s underlying autoimmune issue, had caused complications.

And so, I had ongoing issues. and even last year, I ended up having pneumonia and ended up being, again, a critical because of all these underlying issues. And surprising thing about it when we talk about hidden disabilities is, if I walk outside of my door and walk him every day, no one has a clue that any of this happens.

Yes, looking at you, we're recording this on Zoom, and I can tell you that Danielle looks the picture of health. She really, really does, and so that just makes it so difficult to get the understanding from other people because there's just really nothing outwardly obvious, immediately apparent to the eye, from where I'm sitting. So, that's why these conversations are really great. So, just to go back, you said DVT. So, that is deep vein thrombosis, isn't it?

DCM

Yes.

Really dangerous.

DCM

Yes, really dangerous. I ended up, like I said, having pneumonia last year and a clot on my lung.

00:09:41

And now I'm on medication for life for DVT, on blood thinners. So, it’s another complication. And this is the thing, when we talk about comorbidities, someone might be diagnosed with X, but actually, due to complications they have, a simple thing like a cold or cough, which I had, which my husband also had and my mum had, and they recovered, ended up having a detrimental impact on my health and adding more complications.

So, it's really important that people understand that it isn't just one set in time, that this can evolve over time.

Yes, and I would imagine, I'm no doctor, so this is just me thinking, the body is put under pressure, trying to look after and fight off these different illnesses and effects. I guess, then that does… I guess, it's a little bit like when a leak gets sprung, isn't it? It's trying to plug that leak, and then the pressure builds, and then, oops, there's another leak there. And I guess, that's, kind of, how comorbidities manifest within the human body. I don't know.

DCM

Yes, 100%, and not just in the human body, but also your mind as well. We have that mind-body connection. And I'm very much an advocate. I talk about neurodiversity, is my field of expertise, but that impacts for me. When you're having somebody who has physical symptoms and cognitive symptoms, that plugging of the hole becomes even more complicated.

00:11:14

Yes, complex. So, before we learn a bit more about what palindromic rheumatism is, I just wanted to also just go back to the connective tissue disorder, because you mentioned fascia. And it wasn't until recently that I actually learned what that is, and many people might not know what it is. So, would you mind explaining, in your words, what our fascia is?

DCM

Yes. It's interesting. I didn't really know much about it, and please note that I am not a healthcare professional or a doctor, so this is just my interpretation of fascia. Feel free to contact your GP. Just putting that FYI out there. Basically, the muscles in your body, and not talking about the bone, the muscles in your body and how you move your body, are combined of multiple different layers. You have different layers of tissue, different layers of muscles.

But you have this thing called fascia, and it's elasticated, and it moves around, and it flexes. And it's used to help with, sometimes, movement with the joints and the connective tissue that you can have within the joints. It helps with blood flow. There's loads of different things that can help with. But the fascia, we don't really talk about. It is literally everywhere, in all parts of the muscle, the body.

And this is the bit that people don't really understand, because unlike a joint, you can feel the bone in your wrist, you can feel it there, and other than a bit of skin and blood vessels and bit of tissue around it, you, kind of, understand that, but the fascia runs in between some of the muscles and connects muscles.

00:12:53

And that inflames, which means that you're not isolated to one specific area. You can be isolated to multiple different areas in that muscle and across different layers of that muscle as well. And that's where that inflammation could be really, really quite, have a lot of impact. So, for example, you can have fascia around certain major organs, and therefore, that can cause, if that inflammation happens, that can have impact on those organs.

So, it's really important that people understand that we're not just the one layer you see in your old school encyclopaedia or what you google online. We're multi-layered, and there's different parts that can be impacted.

Thank you, because that's interesting. Again, this is brilliant. I love these conversations. I literally learn so much, that it can be around your organs, because the reason I found out about it… And again, this is a personal thing. I don't talk about advocating for any treatments at all, but just, I had a craniosacral massage, and the therapist was just putting her hands underneath me. I was like, what's happening? I don't really feel like, this is not a massage. Am I being hoodwinked here?

And, anyway, over the course of the session, what she had done was sort of, this is not the correct terminology, either, but melted the fascia. So, I just…

DCM

Yes, soften it out.

Softened it out, yes.

00:14:23

DCM

To relax, yes. It’s just to get [overtalking].

And I just went, yes, really heavy. It was like, wow. I literally felt my body melting into the table. So, that's where I first heard this term, fascia. And again, I didn't even think about, okay, well it's inside, and it's all around your organs and everything. It's absolutely fascinating, it really is.

DCM

And I've not had one yet. One thing I've been advised, by an osteopath and by a physio, is to probably have regular massages like that, even lymph drain massages. Not anything like the heavy ones or the softer ones that you have when you go to the spa day, but to help with the fascia, to help move it, because I will have a lot more tension in my body, in my muscles and my joints, due to that fascia just being inflamed constantly, trying to get it to relax and calm down.

So, a lot of my… You see the top of my neck's hair. If you're an expert, you'll be like, oh, that looks like there's tension there. A lot of it's due to my connective tissue disorder and my palindromic rheumatism.

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Tell me, palindromic rheumatism, [unclear], isn’t it? I keep wanting to say philandromic. Yes, tell me, what symptoms do you experience? And you said it's inflammation of your joints, right?

00:16:03

DCM

Yes. So, palindromic rheumatism, and I was having a look at arthritis.org, because obviously, they have very nice definitions on it, but basically, it's very similar to what you’d know as arthritis or rheumatism, which is inflammation of the joints. The difference with palindromic rheumatism is literally in its name. So, palindromic is a word that is spelt the same way forward as it is backwards in Western language, because obviously, we've got other languages where it is different.

And that means that these inflammations can move from one side of the body to the other. And literally, when we say, move, it moves. So, you could have a flare-up in your wrist one moment. That can move to your shoulder, then to your elbow, and it can just move to joints around your body. That's one of the symptoms. The second symptom is, it can come out of nowhere, and it can last for very short periods to months.

So, you can have a flare-up that can last literally an hour, or a few hours, to weeks and months. Some people have had it for a year. And the third bit is, there is no joint damage, which is one of the major indications of arthritis. So, when people are usually diagnosed from rheumatism, so a rheumatism in the joint area, to arthritis, there's a sign, when they have their scan done, of damage to that bone, to that cartilage, to that joint, for whatever reason. And in palindromic rheumatism, you don't have that damage.

So, number one, it's very hard to diagnose. It looks very symptomatic, and it has a lot of clinical results as other rheumatism or arthritis diagnosis.

00:17:56

But I suppose, the most awkward or challenging aspect to it is that it’s coming and going, and it's moving around, because you do have the sense of being the one in wolf’s clothing. Are you really sick if it's the same joint, and it's moved to a different joint, and it doesn't last that long? You can go from running a marathon and doing a long jog to not be able to get out of bed. It can be that drastic, and I've seen that through my health journey.

And I've spoken to others who've come from all over the world, who talked about, is it the temperature? Is it the food we eat? Is it ethnicity? Is it gender? And there's an array of people in the group who've come from different parts of life, different countries, who’ve all said, well, no, I live in this area, so I don't have that impact, and I still have issues and different joints. Some people have lower-body joints. Some people, like me, have upper-body joints.

It really does vary, but the most important thing is, there has been consistent, over time, of these flare-ups that have happened, and they have moved from multiple joints, and they have not shown damage to those joints. And those were the three criteria.

Okay, crikey. So, are you totally tuned into your body all the time for if there's a pain, like you say, in your wrist? Are you then waiting for it to bounce to another part in your body?

DCM

It's so difficult. So, you're going from… Let's go back to Danielle in her 20s, out with her friends, enjoying life, travelling, in the gym, very active.

00:19:42

And if you add on my ND brain, my ND brain is very much a creative, active brain. I worked in STEM for years, but I just loved moving, and I was always able to do a job where I can move and talk to people all the time. And so, that's always been a part of who you are. And so, when you have a chronic illness, so if I think about my undifferentiated connective tissue disorder, which has probably more of an impact these days, that is very consistent, so I know what I can and can't do now.

But when I was going through the early phases of palindromic rheumatism, and some of it still shows up now, you think, well, yesterday I was fine, so today, why not? I went out as, I can do that holiday, and you're literally managing your energy, but not really knowing if you're going to be impacting, which means it has a massive impact on your mental health. It’s had a massive, massive impact on my mental health, my confidence, my interactions, my social life, friends and what I couldn't do.

I was the girl who would go out and do the craziness on the weekend, on Fridays and Saturdays and literally not move on Sunday because I'd overanalysed or overcompensated, because I was fine last week, and now this week, I'm not. And then obviously, when you think about the workplace, when you think you're okay one week, and suddenly, you're having to take off sick days, and you're trying to judge how you're going to be okay, are you going to be able to go back into the lab or into your role? Can I physically drive?

00:21:27

I remember driving with flare-ups with one hand, do not tell DVLA, because I've got a flare-up that happened when I was at work, and I have to drive home. It's things like this, it is a real thing, and I'm going to have loads of people probably message, saying, well, check your diet, and check your exercises, and look for triggers. Easier said than done. I've done multiple elimination diets and tracked exercises and things, and I still have flare-ups, so it's easier said than done, and everybody's journey is very, very different.

Yes, that is definitely true, and from everything you've said already, I can tell, you’re somebody who really does pay attention. You said that, when you went to the consultant, you went with a diary that you'd already done. I can tell that you're very in tune with your body, in terms of then being able to document it and show it as evidence, like, well, what can we do here in order to get a diagnosis?

So, there's always wonder cures on the internet, and this, that and the other, aren't there? But lots of people I spoke to with chronic health conditions have just said that they just don't work.

DCM

Yes, they don't, and also, just because it works for one person, doesn't mean it works for you. And that happens, both from a chronic illness perspective, but also from a neurodivergent perspective, which, we need to understand that. Try it, see, and make sure you contact your health professional if you're doing anything with your health, particularly if you're on medication, because a lot of stuff that is now healthy, and a lot of things that are coming out, like all the mushrooms and stuff, if you're on certain medication, you cannot take.

00:23:18

Yes.

DCM

[Unclear] be so, so careful, particularly if you've got any sort of autoimmune or rheumatism, anything like that, like I do, or on blood thinners like I am. They have to be really careful about the actual supplements that someone might recommend that might work, but unfortunately, I can't take. So, make sure you get support when you're going through those journeys, but yes, it’s…

I remember the doctor saying to me once, just because it's from the health food shop, doesn't mean there aren't side effects. So, for us just to be a bit more mindful of that. But anyway, we're not dispensing healthcare. You know that, but it's just a warning, really, isn't it, just to speak to your doctor, basically.

DCM

100%, or your consultant, yes.

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So, sometimes you’re in severe pain, that you can't move from your bed, or…?

DCM

Yes, so it could be to the point where I struggle to get out of bed. So, my self-healthcare just literally goes down. Eating can be a problem. So, not only do I get the pains in the joints, and obviously now the tissues, but if we're going to palindromic rheumatism, it’s mainly the joint area. I also get swelling. So, I can get a random swelling in the middle of my head, or my lip can suddenly swell up, or my eye could swell up.

00:24:54

And that's also a part of my palindromic rheumatism that manifests for me.

Is it?

DCM

Yes.

Oh, okay, so you get swellings as well as [overtalking]?

DCM

Yes. So, I get swelling of the joints as well, which you usually see. And you probably, if you saw that, and you’d spoken to multiple people, you probably would have been like, I can recognise that. But I would wake up, and my lip might just be swollen, like someone punched me, or I'd have a part of my head that would literally just come out and be swollen for no reason.

So, it's not necessarily attached to the bone?

DCM

No. It’s just general inflammation that comes up mainly in my facial area. I do have upper-body inflammation. So, most of the inflammation I've had with my palindromic rheumatism has been joints in the upper body, but there's something around my face, which I get inflammation with as well that corresponds with my palindromic rheumatism. So, I might get a pain in a joint and then a swelling in lip, and it's like, why would I get that at the same time? I haven't eaten anything or done anything.

00:25:56

And then the fatigue, the physical fatigue, which a lot of, obviously, people on this podcast and with hidden disabilities talk about, is another thing that has a massive impact. And it's not just joint pain and connective tissue inflammation, but that fatigue and feeling that drain and not being able to move, not being able to do everyday tasks like brushing your teeth. I could not live without electric toothbrush. That is a godsend. There's certain things that I have to have.

I don't have all the things I probably do need. We'll get on to that, but, yes, I have quite a lot of things that help me, and I have my mum, who is very active, and my husband and stepson, who have been instrumental in just supporting me on a regular basis.

Without that network, you feel life would be very different?

DCM

Yes. When I hear about people who are doing it on their own, I don't know how they do it. Simple things. One of the things I had recently with the connective tissue, and passed after having the pneumonia and the clots, was really bad inflammation in my back muscles, where my mum literally has to massage it for me to be able to sleep. This ball in my bed, and I'd have to massage it a little bit to get it, to just relax, just so I could sleep.

Every single day, when I was with my mum, she'd do it. With my husband, he'll try and do it. If not, I have the little plastic ball, and it was for pretty much, it's been a year now, and every single night, I need to do massage to get it to relax.

00:27:37

My goodness.

DCM

Yes. And even with osteopaths… My osteopath is absolutely amazing, has helped it be less pain, but when it flares up bad, it is really painful. So, to have to cope with that on your own and not have someone to just help you, just to recognise that this is something that, you're in pain, and maybe you need to stop and rest. Just those little things. Community is so important, and I think that's one thing I like about the Hidden Disabilities, is it's actually just creating a community.

Before, I used to wear mine, I'd walk on the train, and I knew about it, and I'd see people wear theirs. I went to a festival, and I saw people wear this. This is early phases, not as popular as it is now. And just knowing that other people are going through that and are enjoying life… Because sometimes you feel like, I'm ill. I should be out enjoying my life. I should be at a festival. I should be in bed. I shouldn’t be at a gym. I shouldn’t be out having a meal. I should…

Suffer, be miserable.

DCM

Yes, suffer for the pain. It justifies me wearing this, and it justifies this kind of martyr thing. And I know we're breaking down the narrative, but having someone out at those places wearing those means I'm not the only one. Someone else is living [?] their life, and they have hidden disabilities as well, and we can. And it, in a way, justifies it, which is probably the biggest thing and newest learning that I've had.

I think that you're not alone with that sort of fear. Some people are worried that, will it make them a target or something like that?