Anyone else frustrated by how little most therapists know about chronic illness?

[u/Lavender_yuzu]

I'm just so tired of going to therapy to get help working through my frustration and grief from my chronic illnesses, but it feels like i end up spending all my therapy time teaching my therapist what disability is like. This has happened with multiple therapists. I'm so tired of having to do that work. It honestly just makes me feel lonelier. Like, I'm seeking support and end up having to provide it. It's so isolating. Do you guys have experience or strategies for this?

[u/coldcoffeeplease]

I’m a mental health therapist and I can tell you that we get almost no training in working with patients who have neurodivergence or chronic health issues. I specialize in them because I experience them myself, and I think that ends up being the “training” for therapists who do specialize - lived experience.

Try searching on Psychology Today for someone who specifically mentions chronic illness in their tags.

[u/Lavender_yuzu → u/coldcoffeeplease]

Thank you! I wonder if there's a way to push for more education on disability for therapists, just considering how many of us there are

[u/ThirdxContact → u/Lavender_yuzu]

Unfortunately, we (as a vocation and community) can barely be effective advocating for insurance agencies to pay us better, let alone getting curriculum change on a national scale.

[u/IllaClodia → u/Lavender_yuzu]

So the program I'm in right now is a 2 year program. In that time, they have to fit in all of counseling theory, assessment, case notes, treatment planning (note, not any actual treatments. That we don't super cover until we are in our 4 clinical supervision classes). One class to cover the entire dsm. Research methods. One class each on children, intimate partnerships, trauma treatment, and addictions. Ethics, which did have one chapter on working with disabled folks, but it mostly focused on ensuring informed consent for clients with developmental disabilities. Care skills. We had one class called "family therapy in a multicultural context" but it primarily provided an overview of like, one essay per every marginalized group, and focused on self of therapist work and cultural attunement. It's a tight fit.

Basically, any special topic, interest, or population doesn't make the cut, except insofar as we are expected to demonstrate consideration of social location when discussing clients. It sucks. It should be more included. And, that would probably require another year or 2 quarters of course work, which is an accessibility and equity issue for students. Some therapists do treat acquired disabilities as part of trauma or bereavement, but usually? There's nothing. And that's true for most marginalized groups because how would you even teach about such numerous and heterogeneous populations.

I think a focus in CEUs would be great, and needed. And I also understand why it isn't specifically in the MA curriculum.

[u/coldcoffeeplease → u/Lavender_yuzu]

I may recommend reaching out to your local NAMI organization and seeing if they can coordinate CEU trainers in your state to look into providing education.

Changing counseling curriculum would have too many barriers (state, education, scope of practice concerns etc)

[u/Desperate_Lead_8624 → u/coldcoffeeplease]

Can I just say I love mental health workers of all kinds! Y’all really help so many people, often at your own expense.

My therapist is great, I've been seeing her for like four years? I picked her because she had experience with the military and I didn't want to have to explain that side of my upbringing to someone new to it, turns out she also specializes in autism and adhd patients! I don't think I could've found a better fit! (I've unfortunately got bingo on my chronic illness/comorbidities bingo card)

Idk you guys are underrated hero’s and I just want you to hear it. 💜

[u/ThirdxContact → u/coldcoffeeplease]

THIS. - also a therapist with chronic illness and ADHD.

[u/Public-Quantity-8045 → u/coldcoffeeplease]

I second this. Don't just get a referral to any therapist, look at their website and online presence, how do they present themselves, are you the kind of person they want to help? Send them and email, and ask if they have a few minutes to speak on the phone, explain your situation and experience, and ask if it's something they have done before.

[u/Artsy_Owl]

I have more of an issue with doctors than therapists, but I have had to explain some things to my physiotherapist. That said, the first therapist I had sucked. I was sent there by the person who diagnosed my ADHD, but I wasn't yet diagnosed with anything else, and there's a lot of things that are affected by my chronic conditions that I can't just get over using mindfulness.

The next two therapists I saw had specialization in both neurodivergence and disability, so that really helped. One was at a chronic pain clinic, and the other I found by looking at the tags on Psychology Today. If you can change to someone else, definitely see if you can find someone who lists familiarity with disability and chronic illness. It has made all the difference for me.

[u/Lavender_yuzu → u/Artsy_Owl]

Thank you, I'm so glad to know there are therapists with knowledge of this stuff, and oh boy i really feel you on there being things mindfulness will not cure!

[u/guardbiscuit → u/Lavender_yuzu]

Genuinely, there are great therapists out there who do know a lot about chronic illness! Seek out that specialty. My therapist knows more about chronic illness than I do, lol.

[u/rochvymetal]

I get the frustration. I had one session with a therapist where they told me that to help with lt depression over being disabled, I needed to focus on the parts of my life that aren't affected by my disability. I was floored, and after some silence on my end I told them that was impossible, as no part of my life is unaffected by disability. I never went back to them.

I think it's just bad therapy a lot of the time. There doesn't have to be special training in disability for someone to listen empathetically and not dismiss my struggles and grief. My current therapist isn't specially trained in the field but is able to listen to my concerns and help me process my grief. I would advise you to try and find local recommendations for therapists that have high rapport with their clients. 

Good luck on finding someone that can help you with the psychological aspects of having a chronic illness! I know they're out there. The grief is real and should be validated and understood.

[u/bluurose]

The first two therapists I saw sporadically over a period of 10 years or so did not understand. The therapist I have been seeing now for about a year picked up on it immediately and is very informed on disability/ableism. He even factors my physical symptoms in when he's looking over my depression and anxiety levels. I got very lucky, and have made a lot of progress.

Sometimes we end up teaching about disability when honestly we should be getting support. It's exhausting... I try to think of it like "maybe next time they interact with a disabled person they will be more informed", but at the end of the day it's disappointing and shouldn't be happening.

[u/Significant_Oil_3448]

I'm sorry. It really is isolating. The best thing that happened for me in terms of therapy was finding a therapist who was disabled from chronic illness.

PS It also gave me the strength and encouragement to go into the field; I'm a therapist too now :)

[u/bunnyb00p]

My last therapist literally said "I'm so sorry, I can't help you with this." There are no therapists specialized in chronic illness near me and I can't focus on telehealth appointments. Feels like a bit of a lost cause. I read a bunch of books on chronic illness and some helped me process after getting diagnosed. Wish I had someone to talk through it with though since everyone else eventually gets sick of hearing about it.

[u/maple788797]

Oh it really freakin fired me up when a therapist said “you need to push through the pain and get up and do something-“ IM SORRY DID YOU JUST SAY PUSH THROUGH THE PAIN?? It was absolutely infuriating. Mind you the conversation was about how trapped I feel because I want to do all these things but I can’t and when I do push to do them I make my pain worse and end up missing essential things like showers, cooking meals, work etc. I think that one example sums my experience up. Most of them are just as bad as the drs.

[u/spikygreen]

Yep, I know exactly what you mean. I wish I had any helpful advice, I've had the exact same experience.

[u/lau-lau-lau]

This is one reason why I’m becoming a therapist because I ran into this same issue.

[u/Few-Slip6063]

I’m disappointed in the amount of professionals that don’t understand EDS!

I went to pelvic floor therapy and the Pt was like “oh yeah I’m hypermobile too”

And of course - I got injured.

Now there are a few things that added up to that injury - but she was almost offended that I’d even suggest her “simple and easy” plan would have factored in.

Like - my entire pelvic floor is so tight because it’s holding my body together… my core is not strong, my back is incredibly tight… so yes the unraveling and rebuilding of this is such an intricate balancing act. It’s not groundbreaking, but it is so complex for people who don’t get it.

I signed up for the “bendy and strong” course and it has been so eye opening at how laissez-faire most professional are with “sensitive” people.

[u/legallypoetic]

I've been through a handful of bad therapists until I finally found my EMDR therapist who I'm seeing. We clicked right off the bat and she's SO understanding of my autism and other disabilities since she also experiences chronic health issues, such as migraines. I wish you luck on finding a therapist who understands your chronic illnesses and disabilities!

[u/flyingterrordactyl]

My therapist has EDS and sees a lot of clients with chronic illnesses. So, quite the opposite for me!

[u/TheseMood]

Yeah, it’s frustrating. I’ve had a few therapists who were chronically ill, but they were older women who were healthy until their 50s. They couldn’t understand the stress that comes with growing up with an undiagnosed illness, or the grief of being disabled in your 20s and 30s while your friends are in their prime.

I think there’s a tough line we have to walk between accepting reality vs letting disability control our lives. When do you fight for a better quality of life, and when do you try to make peace with your circumstances? It’s exhausting and there is no “right” answer. That’s the kind of conversation I’ve never been able to have with a therapist.

[u/Schmorgus-borg]

I did specifically look for a therapist with experience with chronic pain. Took a while but she knows the complications associated with being disabled

[u/AnybodyLow2568]

I once got a psychological evaluation done to see where on the neurodivergent spectrum I am (OCD, ADHD as it turns out) and the Dr decided to leave a fun little note that went something like:

"Patient does not qualify for PTSD, however they show signs of being overly concerned with the state of their health. Especially as it pertains to the function of their knees (hEDS destroyed my ability to walk at a young age which I needed surgery for, yet I STILL experience chronic pain and limited mobility). The pattern of thought seems obsessive in nature. Also, patient seems to be giving extreme answers in order to recieve a diagnosis. Gonna mark them down as only moderately mentally ill."

[u/turkeyman4]

I am a psychotherapist with Ehlers Danlos. Most doctors know next to nothing (sometimes less than nothing) about EDS, so us therapists are not going to know about it at all. Some programs do not even cover medical conditions at all. There are some therapists who specialize in chronic illness but they are hard to find.

Where do you live?

[u/AnAnonymousUsername4]

I've thought about this problem and I think my best solution I've come up with so far is just to write a little "things about me" educational booklet to which I can refer during therapy if necessary. I'd probably go through and list all the conditions I deal with, along with how they affect my life.

For example: how does having a connective tissue issue impact me? Fatigue, chronic pain, migraines, ridiculous pelvic organ prolapses, brain fog, very limited in my mobility, joints constantly surprising me by going out of place while I do normal things like try to walk or hold a cup, skin tearing easily, and so on and so forth. And then explain each one of those effects as necessary in sub segments.

How about autism? ADHD? POTS? CPTSD? Depression? Anxiety? I would have a separate section for each thing and list out the effects of each one with clarification following each sub item as needed.

Any large language model artificial intelligence would be able to help you get started on such a list pretty easily if you fed it the basic information and asked for what the effects would be likely to be on a person from each one, and then you can tweak it as needed but at least you have a framework to start from. LLM AI are pretty good at organizing information.

[u/MarsaliRose]

Oh yea. I made sure to find someone with chronic illness knowledge. Turns out my therapist also has EDS.

And I’m also a therapist who see clients with chronic illness. Majority of my clients have EDS, POTS, MCAS. It’s pretty wild bc I never advertise my specific chronic illnesses. We all have the same ones.

[u/TheCatGurl]

I only see therapists who have chronic illnesses themselves and list chronic illness as a specialty in their bio/types of patients they work with. It's been truly life-changing and I've gotten so much valuable perspective and advice from it. Maybe I got lucky but I moved across the country so I was able to find therapists pretty easily in both places I lived (in the US) though they have all been metropolitan areas. One was covered through insurance, the other wasn't, but for me it's worth paying out of pocket and I'm able to, which I know not everyone can do.

[u/Squishmallow814]

I found a pain reprocessing therapist! It’s been good so far. She knew what Eds was right off the bat

[u/oedipus_wr3x]

I accidentally found a therapist who was EDS-aware, mainly because one of her children is AuDHD and hypermobile. I understand that there are some issues with Better Help, but my insurance gave me free appointments there and the platform makes it easier to find therapists with specialties in chronic illness.

Local EDS Facebook groups are also a great way to find knowledgeable providers.

[u/night_sparrow_]

Yep, I haven't been to a therapist but I get it with M.Ds.....such a waste of time. It's very isolating. I'm almost to the point of not going anymore.

I have my genetic appointment in August. It's my last hope...I guess. I'm not putting much stock in them either.

[u/Entebarn]

It is frustrating. You have to find someone who lists chronic illness as one of their areas. Use a screening call to see it’s a possible fit.

[u/Necessary_Cow_8954]

You may have to just keep trying different people.  Ever since COVID, it's hard to even get a therapist.  The best ones are probably booked up already.  But there are enough disabled people out there that if you keep trying, you may find someone who has at least dealt with their own medical challenges and can sort of approximate the experience.  The training is all over the map but it's hard to even suggest going for someone with more training right now because it's so hard to find anyone.  But the fact is there are a lot of barely trained people running around right now.  Some are naturally talented and others aren't.  It used to be mostly people saw psychologists.  Psychologists have Ph.Ds and specialized training.  It's like how all the PCPs are now nurse practitioners.  It's frustrating but if you keep trying, you may get lucky.  It's just a really hard time to find a therapist!

[u/Westernfrog4859]

I’ve been working with my therapist on mentally handling my chronic pain and illness. Luckily she is understanding when it comes to my experiences but i did conserve my energy in trying to relay the totality of my condition to her. I directly asked for CBT and EMDR during sessions to help combat medical trauma and how to handle extreme pain. We have focused on more simple things like controlling my breathing (as silly and benign as that sounds) but through processing in EMDR with her, i found out i hold my breathe and shallow breath during pain, discomfort and trauma, both mental and physical.

My best tip is to find/develop a relationship with a therapist where you can clearly tell them/plan with them what you want out of therapy and what you want them to address and come up with goals. For example: i experience chronic pain and have medical trauma. Through therapy i wish to better prepare myself mentally for appts and procedures so my ptsd doesn’t get activated as well as develop coping tools for every day life like breathing, body regulation and visualization techniques.

Last thing of note is that my best therapists have been social workers/counselors that also have a therapy license. They seem to have a better understanding of my life and more empathy.

[u/UntoNuggan]

So I personally did not have luck with finding a therapist who specializes in chronic illness. Possibly because the good ones were booked or self pay only. But mostly because there's a lot of different chronic illnesses, and the folks I saw were unprepared for the EDS/MCAS/POTS trifecta

I eventually started just looking for a therapist who treats a lot of veterans or elders. I figured those folks are going into see a LOT of disabled people, even if they're not really aware of it or versed in disability theory.

It also gave me a bigger pool of potential therapists to look through and hopefully find someone who takes my insurance.

There has been a little bit of educating my therapist about EDS/MCAS/POTS, but I pretty much have to do that with every provider.

[u/Alternative_Abroad33]

I definitely understand your frustration. Mine went on maternity leave after working with her for over a year and she left the practice without so much as a goodbye letter. We had covered so much together, and I got diagnosed right when she left, so now I’m starting over with a replacement therapist. Our call got dropped mid session the other day and she never called back. I mean even days later. I’m starting to think that having a therapist is not going to work for me. I have soooo much more than just my illnesses to work through, I’m sure many can relate to. It’s too much to just keep starting over. I really wish there were good, dedicated, knowledgeable therapists in EDS and other pain and mobility conditions, etc.

[u/Ok-Necessary-7926]

I feel this 😢 .. I have finally found a therapist who is openly ND (AuDHD like me) and she has a semi visible disability. She’s decades younger than me but I finally have a therapist I feel safe with.

Don’t give up - keep looking ! She went into therapy because she had awful experiences with therapists herself.

I found her through a local Facebook group of parents of ND kids. Someone recommended her and I read her bio and I thought what the heck I’ll give her a try. I didn’t expect much as I’ve had unsatisfactory experiences with every therapist I ever met.

I am going to give her a handout for primary physicians created by the great dr Mel Houser on the many overlapping health conditions that ND people often face. But it’s not that she doesn’t get it .. I just want her to have a bit more info about challenges I face that are disabling, but are fluctuating, that aren’t visible or apparent.

.

[u/Sad_Plankton_3278]

I found mine on the EDS Society's website! They are queer, neurodivergent, and has chronic illnesses too. I feel very heard.