Invisible Illness
What aspects of your rare disease are invisible to others?
The emotional toll! My coping mechanism is to joke about it so I have something to laugh at. I have daily chronic migraines, severe insomnia, RA, fibro, severe fatigue, etc. The hardest is when I struggle to show up and told how terrible I look! Smmh
, oh gosh, I guess some people think noticing is support and empathy, rather than recognizing the herculean effort to make the event. I use humor as a coping mechanism as well, self-deprecating, often sarcastic, but at least I'm laughing 😀 Keep smiling! - Warmly, Donna (Team Member)
My rare disease’s impact is often invisible: chronic pain, fatigue and emotional toll aren't seen but deeply affect my daily life. It’s the unseen battles that challenge me the most.
, I hear you. You say you're fatigued, and people say they are tired, too. You say you're having a high-pain day and you'll be regaled with how their legs hurt from the gym, their back from moving, their feet from standing in line. And mental health struggles seldom receive deep empathy. Humans have a terrible propensity for expecting people who suffer to LOOK like they are suffering. - Wishing you understanding, - Warmly, Donna (Team Member) 
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The emotional toll is tough for me, too...
Sometimes I feel ashamed that I even have feelings around this stuff...but I totally get that anyone would... sigh.
I now view my growing more self-compassion as a silver-lining to my chronic illnesses.Hugs,
Gina Miller,
Team Member
I have stiff person syndrome and no one can see the spasms that I have all the time. They can't understand because they can see them.
thank you very much and I'm always happy to share any information that can help someone else with this terrible illness. Have a great day You, too, Roxanne!!
The fatigue I deal with is not really understood. It is hard to explain that this is different than just being tired from working too hard.
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Thanks for your share.
This is my main invisible symptom, too...
I think it has the biggest negative affect on my mental health, which is also invisible to others... ugh...lol... time for more self-compassion.Gina Miller,
Team Member
