Do you consider yourself to have an invisible illness?
What aspects of your rare disease are invisible to others? Share in the comments below.
Since I regained the weight that I lost because of inability to consume solid food for some time after my surgery for oral mucosal melanoma, nothing in my appearance or behavior would signal illness. The people who know about it are one's that I have told about my diagnosis, surgery, and post-surgery scans. To others I appear healthy (and I guess that according to early indications, I am healthy. Although I know this is rare and aggressive form of cancer known to recur and spread. That is the invisible burden that I carry.)
My medical oncologist feels that oral radiation is not needed and that immunotherapy is not particularly promising. Her view is that spread is what is most dangerous and so I am on surveillance. I see one of my surgeons, have a full body scan, and meet with the oncologist about the scan every 3 months. If the scans are good for some unspecified period, then the schedule becomes every 6 months. The main thing I deal with is anxiety about the future. While it appears that my cancer was detected early and that my surgery was deemed a success with wide, clear margins, from what I have read the 5 year survival rate for oral mucosal melanoma is around 35%. Intellectually, I know that doesn't necessary predict what will take place in my case but emotionally it is a kick in the pants, so to speak. My dental surgeon thinks that a dental prothesis is not viable, and that given the removal of gum tissue, implants might be problematic even with a maxilla bone graft. So, I might have to get resigned to eating only one side of my mouth, which has worked ok so far. I will get a second opinion about this though from the Yale dental folks who work with the Smilow Cancer Center where my surgery took place. , I feel your anxiety. We always want to "fix" everything, or know that someone can. Not having that assurance does not feeds uncertainty. Having to adjust how you eat is bothersome but can be adapted.
I hope the second opinion provides a road forward to reconstruction. Dental care is so incredibly expensive. Let us know who things go. Warmly, Donna (Team Member)
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.
