General Discussion

So I've seen topics on here from fan threads to questions on how to write resumes, so I finally got up the courage to write a thread about what I have and to kind of ask if anyone else had a rare autoimmune disease as well.
I've struggled with something called Mastocytosis my entire life and it's gotten worse these past years and I'm only 21. I wanted to reach out a little because of its rarity because there aren't really support groups (I also don't really do support groups they kinda **** me out and make me want to run out of the room as fast as I can) I've just never been good about sharing about myself, even in forums, so this is kind of new for me.
So sorry if this is kind of jumbled together.
Mastocytosis is an allergy and pain disease though that gives symptoms of IBS, chronic joint/bone/eye pain and I'm allergic to basically the world. Mastocytosis is also coupled with severe mental setbacks/learning disabilities.
I just doubt everything, and as I'm typing this I've thought about just deleting everything I just wrote and bottling it all up again.
There have been some pretty open threads on here so I feel ok posting this and opening up. Thank you for reading this and considering posting in this thread. I appreciate your time.

I have Hashimoto's which is an autoimmune disease that attacks the thyroid. It's not necessarily super rare, but in my case, it created so much scar tissue that I had to have my thyroid removed because my neck would have just kept getting bigger and bigger the rest of my life. Afterwards they found out that I had even developed cancer.

Managing the symptoms of an autoimmune disease gets really exhausting. Invisible illnesses are ones that people tend to understand the least and think you're just being dramatic if you complain about anything going on with your body. Sometimes it feels like it affects literally everything.. Chronic joint pain, extremely dry skin, dry hair, split ends, thinning hair, insomnia, fatigue, depression, anxiety, BPD, sometimes it makes me shake, sometimes it makes me feel hot, sometimes it makes me feel cold. The worst part is that endocrinologists don't even fully understand it.. my first endo told me that Hashi's would go away after I got my thyroid out. My current endo told me that's not the case, I'm going to have it for the rest of my life, it's always going to wreak havoc with my body, etc. I guess in a sense I was relieved to understand why I still felt horrible 2 years after my surgery but it's still hard to come to terms with the fact that this is just who I am. People may not always understand it and people might look at me funny when I try explaining why I went from being super energized to suddenly needing to lay down after just driving to the store and back, but... at least I know the truth and that I'm just taking care of myself.

I've always been weirded out by support groups too! Whenever I'm having a really hard time it seems like everybody's go-to is 'have you checked out any support groups?' They are not for everyone. I can't even count the times people have told me to check out a specific support group that's 2 HOURS away from where I live. Writing about things on the internet separate from the support-group-community-thing has been a much easier way to cope, especially when it's in a setting where you share common interests with other people (like FR. Dragons, yay). Sometimes it does get lonely, sometimes I feel like maybe I should seek out communities online. I recently signed up for this website called PatientsLikeMe and then it told me that I was like... the first person to sign up who was diagnosed with Hashi's before I turned 18. And then it told me that I was the only one that had been diagnosed with thyroid cancer before the age of 18 too. I got lucky and got these diseases a lot earlier than you're supposed to I guess lol. Despite all of that though it did help me during one part of extreme loneliness, so it's always good to have a backup.. place? if you ever (hopefully never) hit a really low spot.

I've had a hard time very recently because the doctors are telling me my cancer's back and I can't help but think that if I didn't have Hashi's I wouldn't have to deal with this.

It can get really frustrating to know that regardless of what you do, you'll always have to work harder than a lot of people to achieve the same end result as them, and you've never really done anything to deserve that. I guess I find comfort in knowing that there are other people like me who do understand, they may not be physically around me, but they're there and they'll always understand.

@puritypanda i have Hoshimotos too. AS well as a Hypermobility Joint Disorder, which does not like to play nice with my thyriod . I get double joint pain when my levels are off.

I'm sorry you guys have to deal with this crap. Chronic illness sucks. I have narcolepsy, which is theorized to be autoimmune in origin (but who knows) and it's the worst. The fatigue really frustrates me.

@dinok
Lupus is really rough and for a really long time my doctors were thinking that I had it while they were trying to diagnose me. I hope your mom is ok and I send my support right back at her.

@puritypanda
It's very true, I've lost a lot of friends because they think I'm too high maintenance. I have to sit a lot and I'm allergic to alcohol, cigarettes, weed, caffeine (the list goes on) so I can't do what a lot of people my age consider "fun" or "recreational." I mostly want to watch movies or play board games, something that won't exhaust me.
I'm just scared because I'm playing the waiting game, I have the type of mastocytosis that will eventually give me leukemia, so I understand how you feel with the looming of cancer and having that weight. It's frustrating. It's an uphill battle. So many scans to look where it is, so many tests. It's tiring in itself.
I'm young for my diagnosis as well so you're not alone with your young diagnosis. It's frustrating but at least they caught it you know?

@Dinogrrl
For a really long time my mom thought I was faking everything because all these complicated medical tests kept coming back normal but I kept getting really sick. It was really really bad and she wouldn't understand (even though she has her own heap of problems) then finally this really simple test came back positive and it was seriously like the biggest relief ever. Like, it was frustrating that I had this awful thing, but finally after years of testing, something finally came back with a definitive.
I can't stand when people treat you like you're faking. It's really cruel and demeaning.

@FyreMagick
omg I feel you. Joint pain is the worst. Sending support your way.

@Dragonpaw
I can't even imagine having narcolepsy because I have insomnia. So I incredibly sympathetic towards that plight because I can only imagine how frustrating that can be and I hope that they can make a breakthrough with that area of the brain soon.

Hello ^^ It's not rare I don't think? But I've got psoriasis and am going to the doctor currently about seeing if I have psoriatic arthritis on top of it too, so that's fun >.>;

But my psoriasis isn't bad, thankfully. There are times it drives me batty, but I've learned a lot of its triggers so I can usually keep a handle on it most of the time.