Living with Sarcoidosis the mystery disease

I have Chronic Pulmonary Sarcoidosis. In fact a lot of people have sarcoidosis in some form and have no idea they have it. They may find out they have the condition when they take a standard chest X-ray for something else and the radiologist notes it in the report. And a lot of the time, it’s a perfectly benign autoimmune condition causing no trouble whatsoever.

It’s just a lot of little benign fleshy things growing on your lungs. (“sarcoidosis” comes from the Greek “sarko” which means “flesh” while “oid ” means “like.”)

Sarcoidosis, on the other hand, can kill. As in the case of Bernie Mac the late American comedian and Reggie White the Late NFL Player. The disease weakened their immune systems and they died of pneumonia and the scary thing is that they were both in remission at the time.

But you know, sarcoidosis doesn’t have to be benign or conversely, kill you, to make itself known. 

There’s something between being completely clueless that you have it and being dead of organ failure or complications. Sometimes there’s simply the slow damage it does to your lungs, making it hard to breathe, and well, lots of other horrible things like sporadic chronic pain and fatigue episodes. 

Another example is the sweats. Sarcoidosis has well and truly broken my bodies natural thermostat. I break out in full body sweats for no apparent reason and when it happens, I can’t cool down. I am talking about sweat that drips down your body and drenches your clothes. I cringe whenever anyone tries to hug me.

And then there’s the business of going in and out of remission. I have had sarcoidosis officially from 2015 and whilst I have been on continuous medication trying to control it I have still gone in and out of remission several times, each time having to increase my daily and weekly auto immune suppressing drugs. 

The first time I came out of remission, I had this feeling I couldn’t quite put my finger on. I was increasingly fatigued every evening and running a low-grade fever, and I remembered that vaguely felt familiar. My body started to remembered it. And finally, my breathing changed. It became laboured, yet short of breathe like something sitting on my chest when I was resting doing no physical movement at all.

I told my A’ I wasn’t feeling right. I mentioned that I felt like I did when I had the really bad bout of sarcoidosis when I finally got diagnosed.

His words were simply, “Go see the doctor!” NOW

So off we went – firstly to our local doctors. there she saw me straight away and she couldn’t hear my right lung at all. There was a real look of panic in her face. But inside, I knew it what it was – the return of sarcoidosis. 

The local doctor sent me straight to the hospital. I kept saying to the triage nurse I think my sarcoid is back, but I just received blank looks. 

You see nurses and doctors make sure that every little symptom is checked but don’t really understand what sarcoidosis is. Sure I had significant shortness of breathe and a rapid heart rate, but I looked okay? 

Then finally I got to see a ward doctor who knew what sarcoidosis was and sent me straight in for an X-ray. Sure enough, the images were there showing the granulomas growing again. (I would have to await for a few days for another CT scan to compare how far it had grown this time.)

I thought I had closed that chapter. I thought I had escaped and beaten the sarcoidosis, that it wasn’t going to be chronic. But I hadn’t.

How I wish it weren’t so. How I wish I didn’t now have to track down every little symptom to make sure the sarcoidosis hadn’t invaded my eyes, gut, skin, heart, and so on and so forth. 

Yeah. It usually gets you in the lungs and that’s where it’s got me right now, the sarcoid. But it is a multi-system disease. It can go anywhere. And while it’s rare to die from sarcoidosis, it can kill. It can get you anywhere in your body, when you least suspect it.

Living with sarcoidosis is confusing and frightening. It’s predictable, yet not predictable. 

It’s a journey where you arrive to find you haven’t arrived. It goes for good and comes back again. It can be so benign you don’t know you have it, but it can kill. And you feel very much alone. 

It’s funny. With the chronic fatigue and pain it’s all about getting people, even doctors, to take me seriously. Because people don’t die from it. They just struggle.

But with sarcoidosis, you just don’t know what to think. You don’t know whether to tell yourself to stop being such an ass or be frightened at every little twinge. You don’t know whether this time, you should pay attention.

It’s unsettling. Because sarcoidosis is benign, until it’s not benign. In which case you can die.

I tell concerned friends, “Look, it’s not cancer, thank God,” and then worry they’ll think what I’m going through is nothing much at all.

I don’t want to minimise the risks and risk losing their support.

I need and want that support to stay the course of wherever this illness takes me. As I said earlier you will never feel more alone…

I need and want the support you get with a “real disease” instead of this condition no one’s ever heard of. 

Unless of course that person was a super fan of Hugh Laurie and House, MD, where sarcoidosis is always the first disease thrown out when the team is trying to diagnose a mystery disease.

Sarcoidosis, you see, is a mystery disease.
And trust me on this: no one really wants a mystery disease.

Least of all, me