Invisible Illness
What aspects of your rare disease are invisible to others?
I have systemic mastocytosis. Nobody can see what my body is doing to me inside. The intense itching, stringing pain. The exhaustion I feel daily. Everyday my body makes decisions for me. I get no say so. And I'm so sensitive to so many things that can cause anaphatic shock. Smells, perfumes, chemicals, dust, unfiltered water, certain foods. People don't always understand its ha4d to go out and have fun when constantly having t9 be on guard with so many details to keep yourself as safe as possible. I have a tendency to just stay home.or go to my mom's because she stopped all chemical use, has water and food I can eat, changed so many things for me.
Hi
,
Thank you for sharing about the very challenging effects on your lifestyle of systemic mastocytosis. Intense itchiness, pain, exhaustion and chemical and food sensitivities that can cause shock are a lot to deal with... I completely understand your sense of being ruled by your body and the feeling of being unseen as someone with a serious illness...someone who both needs and deserves consideration and protection...God bless your dear mom for helping you feel safe in her home. I wasn't aware of this illness and now feel more informed if I ever have a friend with this diagnosis. Thank you for helping to educate others.
Do you have a support group around this illness? If not, there is probably a contact on this site to check into finding one:
https://tmsforacure.org/Wishing you the best along your continued journey.
Hugs,
Gina Miller, Team MemberHi, again,
. WOW... you surely are being walloped... I hope the migraine has subsided. I get cluster headaches and see a neurologist for my migraines. Proud of you for sharing during a flare.
Gina Miller, Team Member
All of it
,
I felt that...
Hugs to you,Gina Miller,
RareDisease.net Team Member
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 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. 
I am sorry to hear that your family members are not very supportive or understanding. I can really relate with this. It is painful to have to go through that. I hope you know your needs are valid, regardless of whether or not people are accommodating. Also THANK YOU for sharing about your podcast and Youtube channel on rare diseases, that's awesome! Warmly, Tatiana (raredisease.net team member)
fleeting sensations: feeling like the skin is crawling, electric shock sensation, or twitching.
Thank you for sharing more. I just read a bit about this syndrome after searching our site, and then a bit on Mayo Clinic's webpages. I hope that you are able to get treatments to deal with the pain. Hugs,
Gina Miller,
RareDisease.net Team MemberOh gosh that sounds really uncomfortable! Are there any treatments for these symptoms you are experiencing? I know how frustrating it can be when treatments only minimize symptoms a little rather than eliminating them completely or fixing the problem directly. Hope you find something to help. Warmly, Tatiana (raredisease.net team member)
