Why Do I Mentally Frame My EDS the Way I Do?

Why Do I Mentally Frame My EDS the Way I Do?
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I realized earlier that I don’t often think of myself as having EDS. It’s not that I don’t recognize or accept that I have it, but that I rarely ever use it to frame how I’m feeling. For example, I experience a lot of EDS symptoms in my shoulder area because of a teenage injury — but that’s not how I think about it.

In my mind, I tend to say, Oh, my shoulder is really bothering me today,” or, “Wow, my trapezius muscle has really flared up. I don’t usually think, My EDS is causing me a lot of shoulder pain. I couldn’t tell you why, and I’m not really sure if it matters. This wasn’t something I recognized until today. I have a few theories as to why I do it but to be honest I don’t know the answer.

One possibility is that it’s a coping mechanism. The less I think about my EDS, the less it influences me, right? (Insert eye roll here.) I realize how silly that sounds, but let’s be honest: our minds can sometimes trick us into believing things as a way to cope. I’m not sure if that’s why I do it, but if so, I don’t think it would be unhealthy. Rather, I see it as refusing to let EDS define me.

Another possible reason is that I spent 22 years not knowing what was wrong with me but managing the symptoms as best I could. As a result, I couldn’t think about how my EDS was affecting my shoulder (or anything else) even if I wanted to, because for so long I had no idea what it was for! Therefore it’s totally plausible to me that this behavior is simply a holdover from before I was diagnosed.

Does it matter if the answer is hypothesis number one or number two? I don’t think so. Truthfully, it’s probably some combination of the two. I’m seriously stubborn, especially when it comes to my EDS, so I can see myself subconsciously refusing to give power to EDS by recognizing that it’s clearly a player in my day-to-day life. My mindset has also been framed by more than 20 years of not knowing what was wrong, and I’m sure that I hold over much of that today, even though I’ve now been diagnosed for many years. Regardless of the reason, it was an interesting mental rabbit hole that I went down today.

Do others with EDS do the same thing? Let me know in the comments below.

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Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.

An avid equestrian and educator, Karen has been a columnist at BioNews — the publisher of this site — since 2019. She was diagnosed with Ehlers-Danlos syndrome in 2009 after years of searching for a diagnosis that explained her symptoms. Karen enjoys working with her students, riding and caring for her two horses (Cherry and Spotty), and connecting with others in the rare disease community through her writing.
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An avid equestrian and educator, Karen has been a columnist at BioNews — the publisher of this site — since 2019. She was diagnosed with Ehlers-Danlos syndrome in 2009 after years of searching for a diagnosis that explained her symptoms. Karen enjoys working with her students, riding and caring for her two horses (Cherry and Spotty), and connecting with others in the rare disease community through her writing.
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3 comments

  1. Jen says:

    I have suffered from the same condition (EDS) along with other related conditions; I went 10 years from the first major sign that something was not right to getting a EDS diagnosis. But that seemed to be just the beginning, I continue to get new diagnoses every couple doctor visits.
    However, when I wake up and have pain/discomfort and need to relocate joints or do other things; I don’t think about what is causing the problem. I think so much of our time is focused on what joint/symptom is bothering us and we don’t really care what the cause of the problem is; we just want to fix the problem to the best of our abilities. Especially since there is no cure for EDS and EDS is degenerative so we need to focus on enjoying our time with those important to us and doing the things we enjoy.
    So Please – Enjoy Every Day

    • Karen Del Vecchio says:

      Hi Jen! Thanks for reading and taking the time to leave a comment. I agree, it’s so important to not let our EDS shape every part of our daily experiences. Sometimes, we just need to just BE, not be someone with a rare disorder. Thanks for reminding me!

  2. Linda S Crouse says:

    Just diagnosed at 67, my daughter at 42, and grandson at 22. Daughter was first one diagnosed. I get why it is hard to blame EDS when you have had the same issues forever. My R ankle always seems to be the worst affected area in my body and it was always said I was a klutz. I don’t know if I can switch gears and think oh it’s the EDS. It’s just my normal, don’t know any different…. I almost think if I tell someone it’s EDS the will think I am making an excuse when it really is the reason.

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