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Living with chronic illness
JenniferRaymond June 14th, 2022
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Hello! I have a medical condition called mast cell activation syndrome. Its an allergic type disorder that causes severe allergy symptoms and anaphylaxis to everything and anything. It keeps me mostly homebound. I have been sick with it since childhood but it was less severe back then and nobody believed me when I talked about my symptoms so i was forced to continue life as normal and got in trouble frequently simply for being too tired and sick to function. I have a lot of trauma related to the mistreatment i received, and I am still constantly trying to get support from family members who are determined not to support me in the way that I need. I carry a ton of guilt for being a burden and not being able to be there for those around me. I feel a lot of resentment coming from extended family about things i can't control. I also have type 1 diabetes and I have severe reactions to most diabetes medications. I have only 1 insulin that I can take and I'm.fighting my health insurance to cover it so that's giving me a lot of anxiety at the moment. I came here to vent because I'm pretty sure my social media friends and family are tired of hearing it. Sorry for whining and thanks so much for listening!

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adventurousBranch3786 June 15th, 2022
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@JenniferRaymond. I can relate to things you said about not being believed or supported and being to sick and tired to function. Having an “invisible illness “ is very difficult and stressful. I’m glad you came here for support. Diabetes type 1 plus getting your correct medication is a lot to deal with also. I hope that we can support you here.

JenniferRaymond OP June 15th, 2022
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@adventurousBranch3786. thank you so much for your kindness and support! I'm so sorry that you struggle with invisible illness also. Its a very hard life💕

AffyAvo June 17th, 2022
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@JenniferRaymond

Hey, I can understand a lot of this. I have hereditary angioedema which wasn't diagnosed until my 30s but I had many attacks as a child and my parents didn't believe a lot of my symptoms as I did see doctors who didn't pick up on it.

I also have a lot of allergy issues and am currently to wait to hear back on my tryptase test, although thankfully if I do have a mast cell disorder so far it may have only caused one anaphylactic reactions. Still a mess to have that with hereditary angioedema!

You can check out disability support too, you may find some of the things there relevant.

JenniferRaymond OP June 17th, 2022
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@AffyAvo. Sending love and hugs you're way. Good luck with your testing!💕

AffyAvo June 20th, 2022
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@JenniferRaymond Thanks! I will find out soon, not sure if the next step would mean more testing. Could just be allergies too, fingers cross that's all it is.

I hope you're able to keep the MCAS and diabetes controlled well. It's scary that things can get so bad so fast with some conditions.

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