The Struggle to Feel Seen and Heard With Sarcoidosis

Can you hear me? Do you see me?

I repeat these two phrases at least 10 times a day. I think it’s common for folks living with chronic health issues to ask people these questions.

I don’t know about you, but one thing that frustrates me is feeling like no one listens to me. Family, friends, and strangers seem to ignore both my words and my presence. I guess it’s a good thing I enjoy my own company.

Maybe I’m being too sensitive. Perhaps the feeling can be attributed to sarcoidosis or the emotions that come with it. I can’t help but feel like I’m alone on an island. I think that’s the little voice in my head that I should ignore.

However, I feel fine by all accounts. One problem arises when I start acting like I feel good. When I start feeling a little like my old self, that’s when the dynamics of how people treat me change.

Sometimes, when I go to the store, I’ll carry my oxygen, but I won’t turn it on. I like to test myself to see how far I can walk without it. The minute my family or other folks notice this, they try to hurry me along. My family takes off and leaves me to catch up, and other shoppers forget their manners by brushing me out of the way or moving too close to me.

At this point, I turn on my oxygen so everyone can hear the bursts that the regulator makes. Then everyone regroups and allows me my space.

I often reminisce about the times when I was released from various hospital stays. Each time, a physical therapist, a nurse, and a mental health professional helped with my aftercare.

The nurse and physical therapist checked on me in person twice a week, and the mental health person usually called every other week. For the most part, they all did a great job in helping me regain some normalcy in my life. While each of their jobs was equally important, I wish I could’ve spent more time with the mental health therapist to better understand the physical and mental changes I might have experienced.

Chronic conditions can be unforgiving for both the person they affect and their circle of family and friends. When I mentioned my condition to loved ones, they seemed to take a genuine interest in my health and asked how they could assist in my healing.

As time passed, I had to figure out a lot for myself. I’m sure other sarcoidosis patients have had to do the same thing.

It was challenging. I’ve always moved at a fast pace, so slowing down was new for me. I had to adjust my life and become more careful and deliberate, even with little things such as breathing, walking, and eating. I think those changes were some of the hardest adjustments I’ve ever made.

Slowing down caused me to focus only on the times when I was normal. That in itself caused anxiety because I had to face the truth that I was losing a part of myself.

As I’ve learned over the past few years, sometimes you’ve just got to let people know that you’re still around and that you still matter. At 56, life had another plan for me. I never thought I would need supplemental oxygen or be partially disabled instead of being that sought-after producer, camera person, and editor.

Sometimes the truth can be the wake-up call we can’t hit the snooze button on. Life has a way of making things work out according to her plan. I say this because my wife has a way of changing plans for me at the last minute. 

When all is said and done, life goes on. Sometimes you have to make noise and get in the way to remind people that you’re still here. Sometimes you have to be the quiet elephant in the room. And while you’re reminding them, remember that life goes on and it’s so much more fun when you get in the way. 

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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.