How Visible Is My Ehlers-Danlos Syndrome?

Karen Del Vecchio avatar

by Karen Del Vecchio |

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Sometimes I wonder how much of my Ehlers-Danlos syndrome (EDS) is visible to others.

Apart from the obvious things, like my bruising, I think much goes unnoticed. This is partly because I have more moderate EDS, so I don’t have as many visible features as those with more severe cases.

There are 13 different types of EDS, each ranging from mild to severe. Thus, my type and severity are one reason my EDS experience differs from others who technically have the same disorder.

I generally prefer to fly under the radar and don’t like being the center of attention. It’s taken me a long time not to be overwhelmed when all eyes are on me. So, in this way, I really enjoy that people don’t notice. It means I can carry on as “normal.” But I also recognize that not everyone enjoys this privilege.

For most everyday tasks, I’m not as affected as those with more severe forms of EDS, so it’s easier for me to blend in. As a teacher and college counselor, my symptoms rarely directly conflict with my duties. Of course, dealing with chronic pain, pain flares, anxiety, and chronic exhaustion affects me, but I’ve learned strategies so that I can usually compensate.

There are times when I’m injured, however, when I realize just how good those of us with EDS are at compensating — to the point that it’s a natural reaction.

The last time I dislocated my shoulder (for what felt like the millionth time), the only person who noticed was my closest colleague, who realized I was eating lunch with my left hand instead of my usual right. No one else recognized that I was doing anything differently.

I suppose in many ways that’s a good thing. It means I’m so effective at adjusting that my daily routine isn’t very affected by my injuries.

But on the flip side, does this do a disservice to the many people who have invisible medical conditions? Or, does it simply demonstrate the fact that many people don’t notice things that don’t directly concern them? This is one reason the stigma of unseen conditions can be so difficult to combat.

When I tell someone I have EDS, they often reply with something like, “You look totally normal.” Why yes, I do, especially if I haven’t done anything clumsy lately and I’m not sporting any impressive or obvious bruises.

I always try to promote a better understanding of invisible illness when this happens, and it’s amazing how many people seem to have no idea that such illnesses exist. I suppose all we can do is continue to promote awareness with every opportunity, and make sure people understand that just because someone looks fine doesn’t mean they’re not managing a chronic condition.

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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, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.

Comments

Mary Spain avatar

Mary Spain

I'm a young-looking (relatively) 63-year-old with multiple problems relating to EDS and past colon cancer. I am a paralegal with a high-intensity fast-moving job and there is a balance for me between appearing fit enough to perform my job and dealing with issues relating to both of my conditions as each one aggravates the other. It is super important to have bosses who are understanding of my dealing with these issues as it may impact my job. I have had past employers who simply did not give me enough time and/or consideration to deal with my multiple issues. My advice is that if you have an employer who is not empathetic and understanding of your issues, please find another job, even as hard as that may be. I have had jobs that I had for 15 plus years and other jobs that I left after two months because of unsympathetic bosses. Although it's hard, it's well worth it to find the right fit.

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Karen Del Vecchio avatar

Karen Del Vecchio

Hi, Mary. Thanks for taking the time to comment! I'm thankful and lucky that my boss and coworkers are wonderfully supportive of me, and will bend over backward to help me if I let on that I need it. I'm usually just much to stubborn to let anyone know and am so used to adapting that it takes a pretty significant injury for others to notice. So anything in that regard is completely my fault, not theirs!

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Evalie Lockard avatar

Evalie Lockard

I am finding that my ability to mask my pain in order to carry on with my life and "not be an inconvenience" has started to have a detrimental effect as I work with a physiotherapist. She is unable to discern when I am in pain and need to stop or rest during sessions. At the age of 58, I didn't know how ingrained the behavior was. How much of the invisibility is because we, ourselves, hide it?

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Karen Del Vecchio avatar

Karen Del Vecchio

Hi, Evalie. Yes, this is exactly what I was trying to get at in my column! Does our ability to move forward despite our pain help us or actually hinder us? Personally, I suspect that it's a combination of both. To some degree I need to compartmentalize my issues so I can function on a day-to-day basis, on the flip side, by doing so I'm preventing others from helping me because they don't know anything is wrong. I don't know what the answer is, but I appreciate you taking the time to comment!

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Doris Lee Sprinkles avatar

Doris Lee Sprinkles

Searching for Help. My daughter is 46 and is dealing with EDS very sadly she is leasing her teeth. At a loss to find dental care. Stephanie is on SSI and low income. Do you know of any dental care or DDS that could provide any assistance. Living in California (Ventura/Los Angeles Area).
Saying prayers and hoping. Thank You.

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Karen Del Vecchio avatar

Karen Del Vecchio

I'm sorry to hear this. I wonder if the Ehlers-Danlos Society might be a place to search? While I haven't interacted with them personally, I've looked around on their website and they seem to have a pretty extensive listing of links and organizations under the "Community Resources" tab.

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