When symptoms of sarcoidosis include feeling like a burden
A lack of visible symptoms can leave me questioning my own judgment
Have you ever read something and just said to yourself, “Yes. YES. Oh my God, yes. 100% yes. So much yes!”? Have you read something that made you feel gutted — both out of anger that anyone should be made to feel a certain way and sadness because you feel it, too? Well, I just did and had to share it with you.
It started with a column by Brad Dell at Cystic Fibrosis News Today called “Am I making excuses or simply explaining my reality with CF?” I’d barely gotten past the title before my impostor syndrome started shouting at me.
“You’re just making excuses, too!” (Even though I know Brad isn’t.)
“You’re not really disabled. You should be able to work, play, cook, clean, exercise, etc.”
“You just have trouble breathing because you’re so fat, not because you have sarcoidosis.”
And so on.
Sometimes I think the self-doubt hits me harder because my condition is invisible — no one else can see the granulomas in my lungs or the dysfunction in my nerves. When I’m not using a mobility aid, there are no visible signs of sarcoidosis or my other health conditions.
Perhaps even worse is the subjectivity of sarcoidosis symptoms. That means I’m the only person who can say how bad it is or what I’m able to do at any given moment, as opposed to when I broke my foot, for example. Then, every decision was clear, evidence-based using my X-rays, and made by the doctor. Now, it’s just me — and after a decade of medical gaslighting, it can be hard to trust my own judgment.
My own worst critic
Whether it was this poor judgment, wishful thinking, or just plain stubbornness, reality knocked me through the wall when I tried to do a simple thing (or so I thought) the other day: food shopping. I’ve been doing it online since the start of COVID-19, but I was ready to do it the old-fashioned way again.
Since my hip replacement last year, I can (mostly) walk without (too much) pain, but I still can’t walk and breathe at the same time. At the supermarket, I figured I’d be stopping every few feet to look at products on the shelves, which would give me time to catch my breath.
I was out of breath just walking from the car to the store’s entrance, but I was able to recover while I grabbed a shopping cart. I glanced around, and the store looked a mile deep in every direction. I froze, overwhelmed, as if I’d never done this before and didn’t know how to begin. Still, I only had to take it a few feet at a time. I could manage that, right?
Apparently not. Even with frequent stops, it was too much for me. I couldn’t catch my breath, I started sweating, and I felt weak, dizzy, and just … not well. My saving grace — as is so often the case — was that my husband was there with me. With a full cart and too many aisles still to go, I had to give up and wait in the car while he finished the job.
With that, Brad’s column resonated even more. After blaming himself for making excuses, he shares his inner monologue: “I know, I know: ‘You shouldn’t be so hard on yourself, Brad. It’s not your fault.’ Sure, thanks, seriously. But will you still think that when I burden you, fail you, even hurt you?”
Likewise, I know my husband doesn’t blame me for the things I can no longer do, but I can’t help feeling like a burden at times.
A financial burden, as my Social Security Disability Insurance check is a mere fraction of my last salary when I was still able to work. Not to mention the added expense of copays, medications, and adaptive equipment.
A physical burden, as I don’t have the strength or energy to do simple household chores or carry my own bags.
An emotional burden, as the thought of all I’ve gone through and all I’m no longer able to do invokes pity, sadness, and frustration.
A temporal burden (is that a thing? Well, it is now!), as it takes me so much longer than it should to perform even the simplest tasks.
Again, Brad’s words come running through my head: “Maybe I’m projecting what I think others think of me, internalized ableism and all that.” I believe that’s true for me, and likely for many of you, too. We’re often our own worst critics, but the people who love us understand the truth. It’s our illnesses that are burdensome, not us. I hate that Brad has to feel otherwise, but there’s comfort in knowing it’s not just me.
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.
About the Author
Mary
Kerri, you never cease to eloquently verbalize by innermost thoughts and feelings. We are truly sister warriors and I’m certain we will continue to forge forward, difficult as it is, until we can confidently appreciate each and every day for what it is. Thank you ❤️
🦋 Kerry Wong
Thanks, Mary. Sarc sisters, for sure ... in it together, and there is always something to appreciate (but it is ok to *not* appreciate at times, too)
~🦋
Sean
Thank you for bringing awareness. I was diagnosed 19 years ago and went into remission. The diagnosis took awhile for my physician. It took a referral to a specialist. Started out with pain in my feet and joint pain so extreme I could barely walk. Treatment took over a year. I was so afraid as the treatment was dialed back I was afraid of getting the symptoms again. I still have the thoughts of having the symptoms come back. I was in denial when I was first diagnosed. Before the specialist my general practitioner gave me a steroid and the relief was the next day. After the steroid ran out the symptoms were back. I still live with fear of it coming back. I can remember the pain I was feeling then and never want that experience again. I am now very active and run daily. I thank God for the outcome I have had.
🦋 Kerry Wong
Yes, remission is wonderful, but I understand that fear. Thank you for sharing your story -- it can give others hope that remission is possible. And I hope it lasts forever for you.
~🦋
Mouse Pie
Thank you for your excellent article. Having a rare disease is difficult in itself, I can hardly pronounce the multiple autoimmune diseases I’ve been diagnosed with. The pain, fatigue and brain fog are not visible to others but make life difficult. Google a disorder and get different information from that site. Try and explain why you’re declining an invitation, again when you don’t look ill. Or accept the invitation only the day of you can hardly walk and the pain level is a 9. Everyone has challenges and I make an effort to not discuss my health issues. I’m okay how are you? For now, that’s enough.
🦋 Kerry Wong
Thanks for sharing. We've all got to find our own comfort level for what to share and whom to share it with. But I definitely feel you on the frustration from conflicting information.
~🦋
Iris Kahn
I never minded doing things for you when you were a child ....news flash.....you're still my child .......so you will never be a burden
I love you
🦋 Kerry Wong
Thanks, Mom. I love you, too.
~🦋
Jonathan Meadows
Thanks Kerry, I so needed to read this. I'm a neurosarc guy, diagnosed 12 years ago. I'm currently going through a period of "I hate that I can't do the things that I used to" . I feel guilty when I can see people could use my help but physically I just can't. Your article helped me to realize it's not my fault.
🦋 Kerry Wong
Thank you so much, Jonathan. It is DEFINITELY not your fault. I get that guilt, too - whether it's simple household chores or seeing a frail-looking person struggling with their packages ... I *want* to help, but can't. But what I've learned is that we may not be able to help in those physical ways, but there are other ways we can be helpful within our limitations (like sharing our stories here 😉).
~🦋
JoyRae Davis Shuman
Wow, this hits home hard.
One thing I would suggest, hubby drops me off if there is a long walk. In addition, my pulmonary doctor did request and I received a handicap pass. This has helped immensely. Specially when hubby is not around. I don't do large big box stores any longer by myself, I keep it to the smaller stores, like ALDI or CVS and might pay a little more, but I know what I can handle. The only time I do big box stores is when Hubby is around and can help me when I need it. Its not often, most things are ordered via Amazon.
🦋 Kerry Wong
Thanks for sharing these great tips, JoyRae -- I know they can be helpful for many of our readers (and, yes, Amazon is a godsend).
~🦋
Tammy Mullins
I feel like I am alone with this (sarcoidosis and fibromyalgia). I don’t know how to find true help from doctors or advocate for myself. Thanks for your article.
🦋 Kerry Wong
It's easy to feel lost, especially when new to the diagnoses, but you are NOT alone, Tammy. You can find sarcoidosis centers through the World Association for Sarcoidosis and Other Granulomatous Disorders at wasog.org, and depending on where you are located, there are a number of helpful Sarcoidosis organizations. You can also find Sarcoidosis groups online, where you can connect with others who are living with the disease (many with fibro, too). I wish you luck in finding the help you need.
~🦋
Karen Briggs
It’s nice to know I’m not alone in my thoughts. So far I’ve been diagnosed with 5 autoimmune diseases, and I think they all mimic each other in pain, fatigue, brain fog, etc. My brain tells me that I can do the things I used to do until my body tells me a different story.
🦋 Kerry Wong
You're definitely not alone, Karen (though I wish there weren't so many of us). I saw a post a while back that said "I'm a person who wants to do a lot of things in a body that doesn't." That was really the perfect description.
~🦋
Shauna
Feel the same... it hurts when people think you can do more than you can just because you don't look like you are struggling or sick. Diagnosed 22 years ago. Sometimes I drive to the store and drive home cause I don't have the energy to get out and walk around. Thank God I do have handicap permit and can park close most times. Sometimes I just say I'm ok cause I don't feel like explaining everything and sometimes you know people don't really want to hear the negative all the time. But I have found that if you say your sick one day they expect you to be back to normal in a few days. That's not how it works. There's always something... always a pain. But I just keep trying to do as much as I can. It gets excusing.
🦋 Kerry Wong
I get it, Shauna. It's so much harder when people don't understand. That's the main reason to share our stories - it helps us find each other.
~🦋
Kat W.
My two favorite symptoms to explain to the doctor are;
1) I feel weak, and
2) I feel generally unwell.
Sometimes it seems like our healthcare providers just don’t get it.
🦋 Kerry Wong
Yes, Kat! That "unwell" is so vague, but sometimes it's the best we can come up with. I've also seen "post-exertional malaise" in some medical records, though I don't need the exertion to feel it!
Malaise = "a general feeling of discomfort, illness, or uneasiness whose exact cause is difficult to identify" (Google search/Oxford Languages).
~🦋