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16 Symptoms of Ehlers-Danlos Syndrome That Aren't Just 'Signs You're Getting Older'

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Editor's Note

Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

Article updated September 5, 2019.

If you live with Ehlers-Danlos syndrome (EDS), you know it’s not always easy to obtain a diagnosis and find people (medical professionals included!) who truly understand your rare condition. Unfortunately, this can sometimes result in having your symptoms misdiagnosed or brushed off as “no big deal.” While this usually isn’t ill-intentioned, it can certainly be hurtful to feel like your concerns aren’t being taken seriously.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

A common experience among EDS zebras is to have symptoms brushed off as a simple result of age. Whether you’re told you’re “just having some growing pains” as a child or that it’s “all a part of getting older!” as an adult, having your symptoms dismissed as “normal” is not only invalidating, but can also be dangerous to your health.

Growing older can certainly bring about some physical changes, no matter which decade of life you’re in, but the effects of the aging process are very different than the symptoms and side effects of a chronic illness like EDS. To help differentiate between the two, we asked our Mighty community to share a symptom of Ehlers-Danlos syndrome they experience that gets brushed off as a “sign they’re getting older.” If you relate to any of the following, know your experiences are real and valid, and that you are not alone.

Here’s what our community shared with us:

  1. Joint pain. Such bad joint pain you can’t sleep at night. As a kid it is ‘growing pains’ then after 20 it is ‘getting older.’” – Sarah B.
  2. Gastrointestinal issues. ‘Oh, yeah, your stomach gets more sensitive as you age.’ At 23, I have gastroparesis, GERD and intolerances to many foods. It’s not sensitivity.” – Kourteney K.
  3. Debilitating fatigue. ‘Oh, that’s part of motherhood’ or ‘Well, you’re getting older.’” – Tiffany M.
  4. All of them. Literally every single symptom I have, has been, at some point, described as ‘Oh you’re x years old, it’s just age.’ When I was 17 it changed from ‘growing pains’ to ‘getting old.’ I shouldn’t be 22 and not be able to walk up the stairs because my knees are in so much pain. Now I am 32 and somehow people believe me.” – Brittney B.
  5. Difficulty walking, mostly because my knee caps dislocate. And forgetfulness. I forget most things these days.” – Crystal A.
  6. Memory problems. I’m only 20 and sometimes I forget something that was said 10 seconds ago.” – Michelle K.
  7. Pain. It was brushed off as ‘growing pains,’ and then just… ignored. And then severe back pain, at age 15, due to the spinal fusion I had had when I was 12. Turned out my spine below the fusion was breaking down, not that I was ‘getting older.’ And then brain fog, starting as a teen. I knew they weren’t normal, but no one chased it down.” – Saylor A.
  8. “Eye wrinkles at 22.” – Ashley B.
  9. Joint pain and hearing loss. I’ve been trying to get doctors, family and friends to listen about both for years to no avail. I’m 26, but that doesn’t mean I can’t experience these problems – especially with an underlying condition such as EDS!” – Kiah P.R.
  10. My knees and spine hurting more when it was about to rain. I thought my grandparents just made it up, but I know when it’s raining better than any meteorologist! Then five years later I find out I have EDS and it explains so much.” – Elyse B.
  11. Brain fog, problems with my teeth (they chip or fall out even though I take super good care of them), joint pain/back pain, weight gain.” – Devan D.
  12. Fatigue. Relentless, overwhelming fatigue. ‘You’re just tired, it happens as you get older, you’ll be fine.’ No. I will not just be able to sleep this off. I fight this every day.” – Catherine A.M.
  13. “Fairly rapid degeneration of eyesight. Not enough to be blind but changing like five times faster than a normal person’s.” – Ashley B.
  14. Joint pain… I’m only 22. I guess they decided growing pains are out of the question now, so they’ve try to blame it on aging.” – Mahala H.
  15. “Bruising. I just had someone say this to me this week. I commented about all my bruises I have after doing an event and a friend said, ‘We’re getting older, it sucks.’ Um, no. I’m 35, not 85. I bruise if you look at me too hard. And I’ve been that way for as long as I can remember.” – Brandi D.
  16. My knees locking when I try to get up from a kneeling position because somehow it shifted out of joint.” – Tiffany B.

Getty Image by bruniewska

Originally published: July 27, 2018
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