Do you consider yourself to have an invisible illness?
What aspects of your rare disease are invisible to others? Share in the comments below.
Some have symptoms that are internal. I have some that you can easily see, some you cannot see. Others that may not be always occurring , and I appear fine, but then flare up without notice. That can confuse people as they seem to think you have to have symptoms visable and always flaring up and constant. I can walk fine at times , other times I might need a rollator walker or even need to be pushed in a wheelchair. It can change throughout the day even. With other chronic health issues, and multiple Rare conditions, I have to adjust to manage them. Weather can affect me, temperature, barometric pressure changes, how well I slept, circulation, balance issues, foods, I fractions, and other triggers for example.
Sensory overload, stress, and more are issues. If I am not able to keep food in me, I am not going to be up and walking much, there isn't energy to do so.
I hide pain well. I hide exhaustion often well, I appear often not to show I am stressed. I learned to mask from other conditions I have and to avoid attention to self, upsetting others, or to avoid getting in trouble. I have extremely high pain tolerance, so don't show it often as I should. It's often there, but I learned to hide it out it in a box to avoid it. Late diagnosed AuDHD as well.I was on TPN for four years, totally dependent, although I did have some malnutrition issues even on TPN, it doesn’t fix everything and unfortunately, the clinic I was with did not do a lot of follow up nor did they work with me to get the correct TPN and after four years, they stopped it when I was in my local hospital down here and they will not restart it they will not give me a reason they will not give me a referral. They will not give me another nutritional plan. I don’t know what is going on. I’ve had no nutrition now going on five weeks. I’m trying to find a local doctor, but nobody wants to take it on which was why I was with a specialty clinic to begin with don’t know what I’m gonna do trying to get in to a program in Omaha, Nebraska
, Have you reached out to ASPEN (https://nutritioncare.org/) They may be able to help with referrals and advocacy. It is abhorrent that your former practitioner left you with no options. Please keep us posted. - Warmly, Donna (Team Member)
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,
