Invisible Illness
What aspects of your rare disease are invisible to others?
Fatigue,
, I hear you! And fatigue can be so debilitating, yet people can't see it so they don't always understand why you have to cancel plans or budget your energy reserves.
Best, Erin, Team Member.
Pain and swallowing issues
swallowing issues I manage through exercises from a speech therapist. I also eat carefully and slowly. I am always the last to finish.
Pain issues are more difficult . It’s always a balancing act. Exercise and being social helps., it sounds like you know what to do to manage and improve your symptoms as much as possible and I think that's really smart! I think SLPs and therapists of all kinds are pretty awesome and so helpful. I am glad the speech therapist was able to work with you to improve your swallowing.
Thanks for indulging my admittedly nosy question!
Best, Erin, Team Member.
I suffer from Myasthenia Gravis (rare) and Degenerative Cervical Myelopathy. I am weak and easily fatigued as well as handicapped with movement.
I have prurigo nodularis, a skin condition that is invisible when controlled by medication, but very visible when flaring.
During the 30 years before diagnosis when my disease was constantly visible, I was belittled and shamed by doctors, nurses, other medical professionals not to mention the public! I was forced to wear long sleeved and long legged clothing covering as much as possible of my affected skin. It was demeaning and damaged me psychologically.
After dx and rx which miraculously worked, my skin cleared and disease became invisible but I still felt shame in baring any part of my body. It has been so ingrained I am embarrased to wear swimsuit or short sleeves and short skirts and pants.
Gradually I am getting better but summertime and winter vacations are emotionally a challenge for me., I am glad that both your body and mind are healing. It is hard to shed those things that the world embeds in us. But we deserve so much better. Remember that you are beautiful, and you are worthy<3 - Warmly, Donna (Team Member)
