My Journey With:

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I Rapid Cycling ~ Migraines ~ Gastroesophageal Reflux Disease (GERD) ~ Obsessive Compulsive Disorder (OCD) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Nonsuicidal Self-Injury (Self-Harm) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Headaches

Wednesday, March 2, 2011

Wow, I didn't know going outside was the cure to EDS!

I was a bit frustrated yesterday.  My home health aide, which is also my friend, told me that all I need is to get fresh air.  This is directly after I told her about how my pain, dislocations, and seizures have been doing lately.  She also suggested I just go bowling because it would make me feel better to get out of the house.  When I told DH about it later he was flabbergasted.  I tried explaining to her that people with EDS should not go bowling, but she wouldn't listen.  When I was talking with DH later he laughed and said I'd dislocate my "shoulder, fingers, wrist, elbow, and possibly something else" if I went bowling.  Obviously she really doesn't understand what EDS is!


  1. The dismisal of people closest to us can be the most hurtful and frustrating. I am so sorry you have to go through this! Ignorance is not bliss, it is ignorant!

  2. How awful, especially from someone who should know better! I do try to spend time outside when the weather is nice, just because it helps my mental health... but I am under no illusions that it will cure my physical ailments, and I would be tempted to smack someone for even suggesting such a thing!

    It made me a bit sad to see you mention bowling. I avoided most sports and activities all my life due to my joint problems. The only thing I ever really found that I enjoyed was bowling, because at least there was no running or jumping, and I played a lot when I was younger (even had my own ball and shoes... what a geek!) I miss it terribly and was just lamenting over it last week with my sister. Even back then I had to wear braces on my knees and wrist just to make it through a game. These days no amount of bracing would allow me to even toss the ball ONE time, LOL!

  3. What a hurtful thing for her, someone who is supposed to be caring for you, to say! Even if she thought she was being helpful, she wasn't. And she's supposed to be your friend, too? Wow, she really doesn't get it at all. I'm so sorry.

    I love that "Things NOT to Say to Someone with a Chronic Condition" sign. It should be posted publicly, everywhere, and handed out as pamphlets.

  4. @ICNMTSU Thank you. I know if anyone can understand you guys can. I really thought she understood it a lot better than that, so I was really shocked when she said those things.

  5. @Jette I know what you mean about sports. In high school I did track and field and threw the shot put and discus. There is no way I could throw shot put now, but I have fond memories of when I could.

  6. @Chocolate and Morphine: I've seen that sign put on a tshirt at I am seriously considering buying one when I can! lol


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