Do you consider yourself to have an invisible illness?
What aspects of your rare disease are invisible to others? Share in the comments below.
Yes, I do feel that my "illness " is not noticed by the general public, whom I see out on the street, or even the gym.
Just because I can walk, almost normal, doesn't mean my fatigue is not present. Just because I can ride an stationary bike for 5 or 10 minutes, depending on how I feel on that particular day, that all is well.
Except for my family, and a couple of good friends, nobody really knows how gMG affects my day.
A 'not.noticeable' does not mean we are healthy, it only means that we are doing the best in trying to live a normal life.
To all of us living with an 'illness', keep on trying to live and enjoy our lives.
Best to you all,I actually have severe gastroparesis. I cannot take any food and I am on TPN nutrition
, thanks for clarifying. Do you find that your friends and family can understand what you deal with on a daily basis?
Best, Erin, Team Member., I'm glad that you are getting the nutrition that your body. I understand that there is a whole psychological component to not being able to take in any food, especially when so many social things revolve around that. Do the people in your circle help to mitigate uncomfortable situations? - Warmly, Donna (Team Member)
Fatigue, muscle weakness, the fact that within minutes to hours I can go from feeling good and being able to clearly communicate to basically being exhausted and having to sleep for a while.
, I hear you. And, while people may mean well when they say things like, "But you look fine!" or "But you were fine five minutes ago"; those comments really don't help, do they?
I do hope you have at least a person or two in your life that understands and can help you get to bed or home when your energy levels plummet.
Best, Erin, Team Member.
The fact that I don’t absorb nutrients from food. I have intestinal failure. And nobody can see that. Short bowel syndrome symptoms, and sometimes nourishment. It is not always visible on the outside.
, That is very frustrating, especially if people are seeing you eat, I can imagine their ot understanding. Has your doctor talked about parenteral nutrition? - Warmly, Donna (Team Member)
