If You’re Struggling With Chronic Illness, It’s OK to Say So

This is not what I wanted to write.

I was actually planning to write a blog this week (yes, I know, it’s been too long, I’ve wanted to a lot, but … well, life gets in the way). But this week was actually five years since I was first (finally) diagnosed with sarcoidosis, and I wanted to write about what that diagnosis has done for me, and how much my life has changed since then.

But alas, life gets in the way.

More accurately, #SarcLife gets in the way.

While people around the world have been hunkering down at varying levels due to the pandemic, those of us with chronic illnesses like sarcoidosis, arthritis and thousands more have had to take more drastic measures due to our compromised immunity and higher risk for not only contracting COVID-19, but more severe outcomes if we do. This is my primary doctor’s way of putting it to me: “The only thing we have right now is extreme social distancing [and masks, and hygiene], and for you, that means extra extreme.”

For many of us, in addition to avoiding social situations and switching to shopping online whenever possible, that also meant postponing non-emergency medical appointments. That’s kind of a tricky thing, though, because the main way many issues stay non-emergency is by maintaining routine monitoring and care. Additionally, it’s one thing when these issues get held off for a month or two (like we initially thought COVID-19 would last); when it’s looking more like a year or more, that is really too long to wait.

So, I’ve started to schedule some of these other medical appointments, and over the last few days, it all just caught up to me.

On Thursday, I had a physical therapy (PT) evaluation for myopathy, any disease that affects the voluntary movement of muscles. I generally say I’m a walking, talking, disaster mess, so I expected the evaluation to show that. Seriously, it’s not just like one bad area. It’s my arms, and my legs, and my neck, and my back — weak muscles everywhere, so we really need to work on strength and endurance. But, there’s also a six-minute walk test, and that threw me a little. Or, a little more than a little.

It wasn’t just getting tired (and the PT kept reminding me we could stop any time I needed to), but my breathing truly seemed worse than I’d realized.  I know I get short of breath easily, and that it takes a while to catch my breath again … but this just felt even worse than usual. And seeing the PT so concerned kinda reinforced the idea that this was really bad, not just my imagination.

Prior to this, I’ve said that though the sarcoidosis (an inflammatory disease causing abnormal masses of inflamed cells in an organ) is in my lungs — which helped lead to the diagnosis — that’s actually the area where it affects me the least.  My biggest problems have always been musculoskeletal; more recently, it’s gotten on my nerves with small fiber/autonomic neuropathy (see what I did there?), which is a type of nerve damage that disrupts autonomic functions. But now, my breathing has truly become a problem.

On Friday, I had my (long overdue) annual physical. I had a list of things to tell my doctor about — things that are being addressed by other specialists, things that need to be addressed by other specialists, things that we don’t need to do anything about now, but I’m just keeping him informed of (which, of course, turned into something that needs to be addressed by another specialist). I left that appointment with two referrals and a lab order (plus a reminder to schedule a follow-up with another of my current specialists). And as we made the appointment for my six-month follow-up, I laughed a little (and cried a little) thinking about how many times I’ll have to reach out to him before that appointment comes.

Over the next month and a half, I’ve now got appointments scheduled for my rheumatologist (arthritis, fibromyalgia and sarcoidosis), endocrinologist (Hashimoto’s thyroiditis), neurologist (small fiber/autonomic neuropathy and headaches), mammogram, cardiologist (that breathing thing), weight management doctor (body by prednisone), gynecologist (issues), dermatologist (cutaneous sarcoidosis) and pulmonologist (pulmonary sarcoidosis). Not to mention, intravenous immunoglobin (IVIg) infusions four days every month (about nine hours each day), therapy weekly and now physical therapy twice a week. And of course, we’ll have to add any additional testing or follow-ups these doctors want to do (there are a few things I’m expecting, but also expecting the unexpected). As if that weren’t enough, I got a message from my doctor yesterday afternoon: Based on the results of Friday’s blood work, he wants me to repeat some of those labs, and also get  a sonogram. Great. Something else.

It’s … a lot.

And it’s got me feeling a bit overwhelmed. Or maybe a bit more than a bit.

Now, this is the part where I’d usually turn things around, where I’d find the silver lining, talk about the good that has (or will) come out of all of this. But I don’t want to do that today. I’ll be OK, I’m not too worried, really. Most importantly, I know I’m not alone in this experience, and I’m not alone in feeling this way. I know some of you have been there, too. And that’s why I’m not going to jump right out of this feeling. Of course, I’d rather be beaming out rainbows and butterflies; it’s my natural state as a happy hippie. But even I have my moments — no one can be that happy all the time. And that’s OK.  I think that’s really the part I needed to get to, the message I need to convey, both to myself and to you: It’s OK not to be OK.

We’ve got to break free from the stigma that surrounds mental health issues, from the negativity about negativity, if you will. Everyone goes through periods of being more down than up, and those of us living with life-altering, sometimes disabling, chronic illnesses surely have understandable reason to feel overwhelmed, anxious, depressed and more (not to mention anyone with a diagnosed mental illness who may struggle to manage these feelings as well). Where this becomes even more problematic is when we think we have to keep these feelings to ourselves, to put on a fake smile for the world while crying or screaming on the inside. It is so important to share these feelings, whether with a friend or family member, a live or virtual support group, a professional therapist or even a blog post. What matters is we are able to unload, to share that burden with someone we trust, with someone who can say, “I hear you and I’m here for you.”

That’s really what I believe we need more than anything — even more than answers, sometimes — that connection that lets us know we are not alone, even in this … especially in this.