Brain Fog

“I think of something I want to say and by the time it should cross my lips, I can’t remember the phrase that would have applied.”

Fatigue

“It’s embarrassing that I need to rest after walking short distances and need help showering and dressing sometimes.”

Excessive Sweating

“It can be cold out and I’m still soaked. I never know when it will happen either.”

Hives

“People act like I’m contagious, when all I am is extremely itchy, painful and uncomfortable.”

Bladder Incontinence

“I am 25 years old and have to wear incontinence pads because I am constantly leaking urine and have accidents on a regular basis.”

Skin Lesions

“I have open sores all over my face and neck which tend to crack and bleed just because I changed my facial expression or smile.”

Difficulty Keeping Up With Personal Hygiene

“I’m not able to bathe as often as I’d like and I smell. I don’t know if other people can smell it, but I can.”

Constant Infections

“I’ve been getting a lot of infections on my face that cause my eyes, ears and nose to swell, turn red and get crusty.”

Digestive Issues

“I can’t tell anymore if the symptoms are from the condition or one of the medications, either way I can’t prevent or manage them a lot of the time.”

Even though the symptoms and side effects of your condition may be totally out of your control, it’s completely normal to feel “embarrassed” by them.

Know your feelings are valid, and you’re not alone.