The Mind-Body Relationship: A Disabled Therapist’s Perspective

Read Time: 8 minutes

When you’re a disabled person, it can be really difficult to find a community of peers who get it.

Like…maybe you need to find a solution to something. Maybe you need validation. Maybe you need someone to tell you you’re not the only one experiencing something. Communication is a large part of our lives. In fact, it’s a human need. But when you’re disabled, for some reason, finding the right community of people to communicate with and about things, is sometimes just a bit more difficult.

After all, we know that as disabled people we are part of a marginalized identity i.e. we’re simply fewer in number. Our odds of finding a community of anyone who is disabled, let alone disabled people who we actually vibe with and share the same disability with, are slim. In fact, it can actually be exhausting to do the work of helping a person who doesn’t have the same experiences or identities as you understand what it is that you’re going through. 

How do I know? Well, because I’m disabled.

More specifically, I have Ehlers-Danlos syndrome (EDS). EDS is a disorder that affects connective tissue, basically, the glue that holds your body together. And like many general diagnoses, EDS has a wide variety of ways it affects the body (and mind, but more on that later). While cases of EDS vary enough that there are 13 different kinds, most of the time someone with EDS will have more stretchy joints and/or skin than someone without, and that tissue will usually be much more fragile.

The 13 subtypes of EDS are:

1. Classical EDS (cEDS)

2. Classical-like EDS (clEDS)

3. Cardiac-valvular EDS (cvEDS)

4. Vascular EDS (vEDS)

5. Hypermobile EDS

6. Arthrochalasia EDS (aEDS)

7. Dermatosparaxis EDS (dEDS)

8. Kyphoscoliotic EDS (kEDS)

9. Brittle Cornea Syndrome (BCS)

10.  Spondylodysplastic EDS (spEDS)

11.  Musclocontractural EDS (mcEDS)

12.  Myopathic EDS (mEDS)

13.  Periodontal EDS (pEDS)

Myself? I have Hypermobile EDS. I don’t have very stretchy skin, but I do experience chronic fatigue, frequent subluxations, and more flare-ups on a daily basis than not. Because EDS is a highly variable disorder, no one person’s experience with EDS is exactly like someone else’s. And just as this is true with EDS, it is true with many disabilities. 

As a disabled therapist, I find myself disclosing my EDS to clients, parents, and even, other therapists. Part of the reason that I choose to self-disclose is that I have to - there are days that I will need to cancel a session last minute or I may be experiencing some brain fog during our session. But on the other hand, self-disclosing my own disability can help foster a space for shared experience and exploration of our identities, and really, to begin creating the building blocks of a community of peers that actually get it.

“Getting it” is a key phrase here that really highlights the importance of surrounding ourselves with other disabled people. We all have a concept of a mind-body relationship, to some degree, whether we are disabled or not. However, being a disabled person truly challenges the idea of a mind-body relationship, which is different from the mind-body connection.

Ever hear that phrase, “Mind over matter?” Well, we’ve been taught to put what our mind is focusing on as the priority. But if you’re like me and have a disability (or even, if you’ve experienced significant trauma or have chronic pain), you already know that the body has its own feelings and needs, and sometimes, the body has to do a lot of work to take the spotlight away from the mind just to be heard.

And all this work? Well, it makes for a bit of a rocky relationship between our mind and body.

To be honest, the idea of my mind and body being equally heard all the time is unrealistic and it would be even if I wasn’t disabled. But being disabled, I know firsthand that the body needs to work at being heard. There have been so many times when I have been trying to concentrate on something and been unable to, only to realize my body has been trying to tell me to lay down or grab a snack. 

I like to visualize it kind of like a scale - the mind is heavy, in the spotlight, and taking up a lot of space by making decisions, overthinking, internalizing criticism. And the body tends to be in the shadow, also having its feelings and needs, but they aren’t really heavy enough to grab our attention.

For the mind-body relationship, this difference of attention can cause some stress or even a lack of appreciation between them. So...how can we help develop a more friendly relationship between our mind and body when both are wanting to be heard so badly?

Well, I know for myself at least, it usually starts with acknowledging my mind and all the thoughts it’s having. When I start to notice these thoughts, I have to actually give myself permission to hear them:

• Wow, people are staring at me because of my mobility aids

• No matter what I do, I’ll never be good enough

• If I had just planned better, I would be able to do what I want to

• If I had just listened to myself, I wouldn’t be in pain right now

• My disability just makes me lazy

• And the list goes on...

It is easy at this point to start comparing… comparing to people who aren’t disabled or even to compare myself with other disabled people. But then I remind myself that everyone struggles with these kinds of thoughts and the goal isn’t necessarily to stop my mind from having them. Instead, the goal is to let the scale align every once in a while or let the body and mind trade places in the spotlight, and be willing to let my body tell my mind what might be more helpful in the present moment.

Let’s be honest though - these thoughts can be hard to work through. Because though there can be some things that most disabled people experience, even within the EDS community, our lived experiences can be wide-ranging. For example, the pain scale. In the disabled community, we often use a pain scale to help communicate to others (and ourselves) where we’re at. But even the pain scale from 1-10 is subjective because what feels like a 6 to me, could feel like a 4 to someone else and an 8 to another person...all while our doctors have a completely different interpretation.

Sometimes being a person with EDS is hard because most of the time, there are few people in our lives who truly understand. It can sometimes feel kind of isolating, like when you say “sorry, I can’t do this right now, I’m having a flare-up.” What I say is not what other people hear. And in fact, when I say this, I am usually trying to set boundaries or working on being more vulnerable, but I never quite know if someone just thinks I’m being lazy or faking it.

This is where sharing lived experiences with others of similar understanding makes a huge difference. As disabled people, we have anxieties around setting boundaries and being vulnerable, about how we are perceived, about what other people might think, and so much more. Sharing lived experiences offers a way to make these anxieties into something useful: you can find out that other people have similar thoughts, ways people have been able to cope, or sometimes receive validation.

That’s the beauty of having community. Although I sometimes struggle to align my own body and mind, I know that I can create a community of people who might have similar experiences. And in turn, know that I am actively working towards developing a healthier relationship between my mind, my body, and myself.

You can do this, too. Anyone can. When you build a community of people who “get it,” it makes just the simple (and not so simple) challenges of life a little easier to get through. It can help you balance the scale and create a braver space for you to talk and practice being vulnerable, without all that second-guessing. Through building a community that fits you, you are assured that your experiences of life are valid and that someone has your back.

And hey, if you're a high school-aged teen looking to build your own community of those who get it, check out our EDS Teen Support Group, which meets virtually every Friday.

Until next time.

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About Our Author | Lena McCain MA, LPC. 0017723

Lena McCain is our Founder here at Interfaith Bridge Counseling, where she continues her support as our Clinical Director. She also holds a Master of Arts degree in Clinical Mental Health: Mindfulness-Based Transpersonal Counseling Psychology from Naropa University.

Lena’s drive and passions lie in the realm of community building and youth collaboration, which she has spent the last 12 years studying with an emphasis on one’s exploration of personal growth, community healing, and multicultural values. Lena’s expertise in these areas and the therapeutic field acts as a reminder to our community, teens, and young adults that they are not alone in their experience of life.