I know there’s probably not a huge audience for a blog specifically about mast cell disease but after seeing my last website about this topic’s popularity grow exponentially over a three year period a few years ago, I have a feeling there are more people out there looking for information about living with MCAS and mastocytosis from a patient’s perspective.

Being born sick, I unfortunately have a lot of experience living with mast cell activation and now that I know what it is, I can clearly look back and connect so many dots all the way to birth, health-wise. I was in and out of hospitals for many years in early childhood, always sick with random things from head to toe, and never a solid answer why.

Until five years ago (I’m 51 now).

And while MCAS or mastocytosis explains why we are sick, I still like to dig further and find out why we have mast cell disease to begin with. There has to be a root cause, because it seems to run in the family and there’s not a lot of research out there on that so I feel driven to try and connect my own generational dots, if only for my own curiosity’s sake.

I also love reaching out to other patients or those who are sick, can’t get a diagnosis, all the tests come back “normal” and yet they’re still getting worse, year after year, with zero idea why. I’ve helped many people figure out that their mast cells may be wonky, like mine, after being contacted by them through my old website.

It did get overwhelming back then, I was getting 10k visitors a day, mostly for the doctor directory, but I did manage to help provide a lot of support for quite a few people and I honestly miss that. I remember feeling so alone and lost when I was at my worst, and I feel so lucky to have found Dr. Petty and the diagnosis that changed my life. So I want to pay that forward as much as I can.

It does mean striking a balance, though, because I get attached to people and I am very empathic so it can affect me badly being so involved with other sick folks. Some people with this disease are far worse than I ever was and it’s heartbreaking. Since strong emotion is one of our triggers, I have to balance myself and sometimes distance myself from the worst of it which can make it hard to be a full time advocate.

Still, just writing and blogging about my personal experiences as well as throwing some research in here and there can help someone else out there, I’m well aware of the power of the internet, so it’s worth it to me to do this and hopefully help just one poor lost soul out there who is “allergic to the world” and doesn’t realize that there is help. Just a few years ago I was almost bedridden 24/7 but today I manage quite well.

I’ll be sharing what I’m using on another post, and I’ll link to the specific brands and medicines I’m using (most are OTC) but if you’re reading this and hoping that what works for me will magically work for you, too, then please realize this disease is so complex that many of us have to find our own personal cocktail of medicines and foods and lifestyle changes to make it work, so there really is no one-size-fits-all approach.

The good news is, we tend to find relief using the same things (quercetin, aspirin, H1/H2 blockers) and I’ve already done the legwork of finding the cleanest, purest forms of these I can find because I react badly to fillers and other ingredients. So hopefully my hard work will help you find what you need to feel better faster.

Anyway, like I said, that’s a future post. Also, please remember this is not medical advice, just my own personal experiences living with mast cell disease.

One of the worst parts of being sick and not having a diagnosis for so many years meant that anyone who knew me either suspected or flat out knew I was “faking” my illness. It’s not uncommon for chronically ill patients to be accused of hypochondria or malingering, and to be honest I can’t be too angry because looking back, it did look on the surface as though I was “thinking myself sick”.

Once I finally found my immunologist, got diagnosed and began treatment (and saw an immediate positive response) I was able to finally begin to process the trauma of going undiagnosed and often unbelieved for so long. After decades of medical disappointments and experiences that also left me traumatized, I had practically grown numb to being treated as a head case but it did feel good to have the ability to be able to say, “I told you so!” if I wanted to. I just didn’t want to by that point.

Anyone who stuck by me, like my husband and son, were still by my side and everyone else had gotten the boot anyway. I honestly don’t have any tolerance for abusive people and would rather be utterly and completely alone than to deal with assholes, unless I absolutely have to.

Still, I do get it. I remember wondering if an acquaintance was faking her “chemical sensitivity” issues years ago, before my own got so bad, and sometimes I wonder if that’s karma for me for doubting her. Who knows, but I do know that I believe you if no one else does. Mast cell disease causes the craziest symptoms that can make YOU look crazy, but you’re not.

You’re not crazy, you’re not faking and you’re not alone. We’re both just sick.

That doesn’t answer why people are quick to dismiss us and I honestly don’t know. As someone who has an invisible illness I’ll always be doubted but I’ve learned to not care what anyone else thinks. It has been the best medicine I’ve found so far (well, after quercetin and gastrocrom lol).

Anyone with chronic illness knows that having one person in our corner can make all the difference in how we handle our lot in life. Over the years I’ve met so many people with mast cell disease or chronic fatigue (CF/ME) or a number of other debilitating, chronic conditions like mine and it seems those of us who fare the best are the ones with support.

Not necessarily an entire support system, either, because those are more rare than you think, but just someone – a spouse, a sibling, a friend, a neighbor – who is there for them unconditionally, believes them (one of the most important parts) and can help arrange rides to the doctor, etc.

For me it’s my husband who has stuck by me and seen me through three decades of mast cell hell. He’s known me since I was 12 years old, though, and watched me struggle over the years, especially after we were married and went through three pregnancies together, so he knows I’m not faking this disease. I do have some who still call me a hypochondriac behind my back, but for the most part no one acts like that who is allowed into my inner circle anyway. I don’t have time for unsupportive people and there are far too many like that out there.

My son has me, which is good in the sense that we both understand what it’s like to live with mast cell activation even though we have slightly different triggers and our symptoms manifest a bit differently. After all, he’s a 30 year old man and I’m a pre-menopausal woman at this point who can’t wait to see if the end of my periods means final relief from the worst of this.

That’s the other thing, all it takes is one bad period and I’m knocked out for weeks afterward. Or one skipped dose of medicine, then I’m spiraling back into mast cell hell. Or one hidden trigger lurking around, ready to pounce. Or…

You get what I mean. I hope you at least have one person on your side to get through this madness. 💜