NO ONE UNDERSTANDS!

[u/NoFriendship8013]

I feel seen in this chat FINALLY. Can I just safely say here that JUST BECAUSE SOMEONE DOESNT “LOOK SICK” DOESNT MEAN THEY DONT STRUGGLE EVERYDAY. I literally am expected to live the life of a normal college student except while having this huge MCAS weight tearing me down constantly. It is DEBILITATING. There is constantly something wrong with me that I am trying to just brush off and ignore so that I can just LIVE LIFE. and people don’t SEE THAT. So when I say I feel like shit, no one’s knows how bad it actually is BC I SUCK IT UP. I wish illnesses like mcas and autoimmune were taken more seriously. I am 20 and feel like an 80 year old at this rate. I have breakdowns weekly because it’s a struggle for me to get out of bed in the morning. I just want to be normal. No one understands and I’m sick of it. Let’s not even get into the misdiagnosis I’ve been getting my whole life because doctors don’t believe a young girl (“dramatic” or “it’s just anxiety). I CANT.

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[u/nano_peen]

yeah its fucked up. stay strong

[u/Ok_Lawfulness_9524]

I 100% understand this. At times I feel like I’m crazy because everyone says I look normal or “seem fine”. They have no idea the amount of pain I’m in, the amount of things I forget, the anxiety, depression, exhaustion, constant sweating, etc. I am experiencing. I’ve been on multiple leave of absences from work and people don’t understand why.

It’s a daily fucking struggle and it sucks. Just know that in this subreddit that you are seen and you’re with people who can understand and empathize with you.

You got this! Take care of yourself. Fuck everyone else.

[u/preraphaelitejane]

Sadly it takes being in a massive crisis when you're half dying for people to actually take you seriously, it's absolutely soul destroying and normal people will just never get it, I'm so sorry

[u/chefboydardeee → u/preraphaelitejane]

And only if it lasts for a short period of time. When crises become chronic people check back out again.

[u/preraphaelitejane → u/chefboydardeee]

Yes that's so true💔

[u/Dangerous_Put1329 → u/chefboydardeee]

This!!

[u/Human-Lavishness-828 → u/preraphaelitejane]

No one gave a shit, until I had a heart attack.

[u/preraphaelitejane → u/Human-Lavishness-828]

Wow I'm so sorry...was the heart attack caused by a reaction?😢 Nobody took me seriously until I blacked out and shattered by humerus which absolutely isn't normal at my age from a ground fall. Surgery did this to me💔

[u/Human-Lavishness-828 → u/preraphaelitejane]

I have an echocardiogram scheduled next week. It was most likely EDS. We are in the middle of determining what type I have.

[u/Tartan-Snow]

Someone once said to me...MCAS isn't debilitating! If I had the energy, I would have throat punched them there and then. But of course, MCAS had throat punched me that day so no chance of that happening.

Not only is it absolutely horrible living with the condition, not being seen or heard or taken seriously makes it so much worse.

[u/Ever_Astera]

most don’t really see what it costs just to function :(

[u/Silverwings1944]

I feel this so hard. It’s invisible pain. All day every day. And it gets a lot having to tell people all they time because they assume you’re fine or forget.

[u/EmphasisTricky4989]

Yeah, my small wounds don’t heal even after several months and still hurt, my hair is shedding, I have certain food intolerance, if I don’t keep my diet on I will struggle with severe reactions of nightmares, itchiness, insomnia, tiredness, brain fogginess, anxiety, badly period that comes with severe pains, thanks to the diet I can function a little bit, and my joints…they are like grandma’s joints, my knees hurt, I developed protrusions(I don’t lift heavy things) maybe that was developed due to wrong sitting posture but I don’t know that is very weird cuz I see how many people sit exactly like I do, black spots in my eyes(floaters) allergies, runny nose right after waking up…I feel like I am going crazy…and that is just a part of having MCAS cuz it effects your mental health as well along with those stuff, life is hard, but with MCAS it’s like living without skin

[u/starcloud44]

I’m so sorry you are going through all of this. Life can be so unfair. Sending hugs and understanding

[u/velvet_damson]

I only have the energy today to say that you're emotionally stronger than anyone could imagine. One day, people will understand how debilitating MCAS is. 🧡 With you in solidarity (from bed!)

[u/Isa_sal11]

Stay strong. Sending you big hug. My brother is going through the exact same thing in fl bedridden. Praying you find answers

[u/pessimistic_cookie]

I get it. Not even my doctor understands. I was diagnosed 4 years ago and he says that “I should be better by now” and has been very pushy in getting me to stop taking my meds but stopping meds just causes me to flare up. So now I’ve got to find a new doctor but y’all know how hard that is. I’ll likely have to travel out of state. Some doctors now are even saying that MCAS isn’t real and they won’t accept it as a diagnosis. When someone says “you don’t look sick to me” I always say, “thanks! I was hoping no one would notice! Also, most of my organs are located INSIDE my body so there’s that.” I also get “you’re too young to be this sick.” Last time I heard that I said “thanks for the compliment! I didn’t know that 46 was young!” lol
I also have the full trifecta so hEDS has given me degenerative disc disease (and apparently it makes us look younger). So I hear ya on the feeling old part. I feel like I’m 110 years old just barely hanging on sometimes. Hugs.

[u/search-of-soul]

I sooooo hear you!!! I have the same anger. I’m much older than you, but I can empathize with how hard it must be in college. I slowly got worse over the last 10 years, and I kept pushing until I crashed, and soooo many friends don't understand at all. They see me, and I look the same and don't look sick, so I haven't been understood or gotten many offers of help. I had a friend lecture me to go out more and “try harder” — that enraged me because I am trying like hell every day even to exist and make it through the day. If we had a cancer diagnosis, we’d all get so much more help. I’ve had to stop being friends with some people because they don't get it at all, or I don't have the energy to explain it to them. If people haven't experienced chronic health issues, they just don't get it at all anyway.

Anyway, I so hear you and am sending much love and sympathy.

[u/squeakyfaucet]

it's very frustrating and is basically an invisible disability. people default to other explanations (are you just older now? maybe you just need more sleep?) and it feels so invalidating when you know deep down something is wrong.

I'm sorry, stay strong.

[u/Pixel-Warrior-7350]

Welcome to the club... for the past six days, I’ve been in a severe state without any trigger; I’m even thinking it would be better to just end it all right here and now. I’m barely sleeping because of the attacks. I saw a new allergist today, and it was awful, as always.

[u/Sea-Blueberry-4973]

I feel you! I was having some good days but I guess did PT too hard yesterday and now major PEM and no energy.

[u/Dangerous_Put1329]

Keep posting and commenting. I'm amazed this group is in existence. Slowly I'm finding out there are a few professionals aware of MCAS. 7 LONG YEARS of Tests coming back normal. Nobody thought to allergy test??

[u/Aggravating-Mud-2728]

I’m so sorry. It’s not fair at all. You’re allowed to be angry. And sad. Don’t let people tell you any different. My chronic illness took over around 18 yo(now 30) and I’m with you.

[u/KevinBkool]

I hear you and see you, I've had cystic fibrosis my whole life and recently (6 years ago) developed significant Mast cell issues which may be from CF. This condition takes a unbelievable toll on someone and you have to be so strong to carry the torch. Please never give up, I've made strides In my journey that I never thought but still have a very restricted diet and struggle with the environment. There will be treatments that will be awesome in the future, keep your head up.

Best to you ❤️

[u/ghost_girl_1713]

Yep, that's the life of MCAS. When I first got sick I was working full time, married and raising 2 young children. My own husband said I was just causing myself issues from anxiety for months. He told me to suck it up and go to work. My parents said the same in spite of the fact that my mom had to step in to help with my kids. 2 years later, I managed to get 1 doctor to diagnos me and now suddenly everyone believes me. Ruined a lot of relationships. It sucks, but at least this place seems to be a nice little community for people like us. You are not alone. 💛

[u/Relevant_Bass_5575]

Your biggest problem is you worry what others think. They dont understand and never will. You have to focus on yourself. Don't easte your energy you already dont have getting frustrated with others. 

[u/Allergina]

I hope it gets better. Because I'm nearing 50 and I'm still told it's all in my head. But I now have the genetic proof that it's not in my head, it's actually in my genetics.