Your Health Is Not Defined by a Diagnosis

Kimberly Zapert avatar

by Kimberly Zapert |

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After recently honoring Rare Disease Day on Feb. 28, I’m contemplating the obvious: A person is not defined by a diagnosis.

This usually means they don’t allow a condition to limit their enjoyment of life or their accomplishments. But that’s not what I’m talking about — not directly, anyway.

I’m addressing the tendency to place too much importance on attaining a diagnosis, even though without one, experiences may be minimized and challenges invalidated.

I see it frequently in online discussion groups, and I have experienced a little of it myself. Upon discovering a possible explanation for an entire constellation of seemingly unrelated bodily complaints, confirming that diagnosis can become an all-important pursuit, because:

  • If this is my diagnosis, then my illness is real. I have proof that my symptoms aren’t made-up or exaggerated.
  • If this is my diagnosis, then I can address my illness. I can’t fight what I don’t know. I want to name it, claim it, and conquer it. I can finally receive treatment and find some relief.
  • If this is my diagnosis, then my illness is no longer an unknown to fear.

But the latter part of these statements doesn’t require the former part to be true. Let’s break them down.

‘If this is my diagnosis, then my illness is real and I’m not making it up.’

This is true, but having a diagnosis doesn’t change what your body is experiencing. The experience is real regardless of the cause. Many millennials and people from earlier generations have encountered doctors who dismissed complaints when they could not readily identify the cause. The hope of identifying “it” gets drowned in a frustrating sea of words like “psychosomatic,” “anxiety,” and “stress.” The good news is that with awareness comes education.

Keep in mind, though, that while medical recognition can help you treat your physical symptoms, a formal diagnosis may have no bearing on your personal relationships. Anyone in your life who was unsupportive before “it” had a name will not necessarily be any more supportive of you after it does. No amount of explanations or convincing will change the attitude of someone who’s unwilling to offer support. Some people are simply incapable of offering support, but it is not a reflection of you. Everyone deserves support and kindness.

If you are struggling with a lack of support or persistent negative feelings about yourself, or if you have a partner or family member who hurts you, tell someone. Tell your doctor, a teacher, a religious leader, or a trusted friend. You don’t have to go it alone. There are community resources available that can help.

‘If this is my diagnosis, then I can address my illness.’

You can address your symptoms before receiving a formal diagnosis. Because of how differently Ehlers-Danlos syndrome can present in different people, they often receive treatment for specific symptoms, not the syndrome.

You may have a doctor who manages your overall care, but you may also require a team of professionals if you have multiple concerns. For example, if you have digestive issues, you may see a gastroenterologist, and if you have hypermobile joints, you may need a physical therapist. Why you are experiencing a problem doesn’t change the fact that you are experiencing a problem.

Hypermobile Ehlers-Danlos syndrome is the most common type, and it can only be diagnosed clinically at this time. Genetic testing is available for the other EDS subtypes as well as a multitude of other heritable connective tissue disorders. These may need to be ruled out if your presentation or family history suggests they are a possibility. Testing can take a long time.

The good news is that you don’t have to wait until the end of the process to start basic treatments and begin experiencing some benefit. I’ve shared in a previous column how much you can do without a formal diagnosis.

Changing your perspective about the urgency of a firm diagnosis and gaining relief from basic treatment can make the diagnostic process a little easier. It can also help you cope with another common worry: What if my diagnosis turns out to be something worse?

‘If this is my diagnosis, then I can rule out everything worse.’

There is nothing worse than the unknown. Thanks to the efforts of groups like The Ehlers-Danlos Society, which advocates for awareness, doctors are becoming increasingly familiar with the Ehlers-Danlos syndromes and their diagnostic criteria. With awareness comes a faster and more complete response in the event of an emergency.

If you have a family history consistent with a particular diagnosis, discuss it with your doctor. Borrowing worry unnecessarily is counterproductive, but so is avoiding valid concerns. The diagnostic process can be very stressful. A counselor can help you process your feelings as you navigate your concerns.


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.


Silvia Land avatar

Silvia Land

Dear Kimberly,
Fellow zebra here, retired dentist (disabled by EDS), and diagnosed at 48. Thanks to my hubby printing your article on “hand pain”, I came across you mentioning “narcolepsy/EDS”. Thank you! I already have a CPAP, and a million co-morbidities, but I could not understand, the life-long insomniac, falling asleep anywhere, lately. Thank you again.


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