Invisible Illness
What aspects of your rare disease are invisible to others?
This is a YouTube video I did on this subject. My channel is Rare Chef. I also have a podcast on their called Rare Connection. Their is both and audio and a visual version of the podcast.
https://www.youtube.com/watch?v=g8XBUssuB2k&t=177sI have Homocystinuria. I am most affected by diet. None of my family members have it and they aren't very understanding. My diet is low protein High calorie. I don't have PKU, but I follow the PKU diet. I also have a podcast called Rare Connection on the same YouTube Channel. I am Rare Chef on YouTube. I am always looking for rare disease patients to talk to. You must be ok with being on camera though.
fleeting sensations: feeling like the skin is crawling, electric shock sensation, or twitching.
I’m sorry to hear that you experience those symptoms. Have you found that those around you are supportive or that they don’t quite understand? Wishing you a peaceful day, Jessica H (raredisease.net, team member) 
Thank you for your share. May I ask what rare disease you are dealing with?
Hugs,
Gina Miller
RareDisease.net
Team Member
My daily struggle with fatigue and muscle weak ess has been an ongoing invisible struggle. Most people don't understand my disorder and frankly some people are unsympathetic to the problems in causes.
thank you for sharing. I can certainly relate to feeling that other people don’t understand. I’ve received a lot of comments from friends that really seemed to downplay the seriousness of my disease. It’s at least nice to know that the folks in these forums understand. Wishing you a peaceful day, Jessica H (raredisease.net, team member)
I would say that fatigue is the hardest part of my life and not being believed that I'm exhausted and in pain. I'm not lazy, I am just trying to survive. I had guillian barre syndrome and I have congestive heart failure. Nerve damage.
Thank you so much for sharing your personal experience of living with invisible illnesses. It sure takes a lot of self-compassion to deal with the judgements that can come our way!
Wishing you the best as you continue along your healthcare journey,
Gina Miller,
RareDisease.net Team Member
