Raising awareness of sarcoidosis isn’t easy, but it’s important

Sometimes my disease gets in the way of my advocacy for its patients

🦋 Kerry Wong avatar

by 🦋 Kerry Wong |

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I think I’m the least prepared I’ve ever been for Sarcoidosis Awareness Month. Or perhaps I’m the least busy I’ve been on these occasions. I know a lack of preparedness and a lack of busyness aren’t the same, but something in my head makes them both feel like a negative reflection on me.

I know that shouldn’t be. In fact, I’ve preached to whoever would listen that our worth isn’t based on our productivity. I even wrote a column about it and included it in my recent book, “Kaleidoscope: Rare Disease Stories,” because it’s such an important message. I believe that wholeheartedly. It’s just hard for it to sink in sometimes.

I was diagnosed with sarcoidosis in late 2015. In the years before then, when I had rotating autoimmune arthritis (mis)diagnoses, I’d become an active advocate for those with arthritis. After learning I had sarcoidosis, I was excited to shift (or, more realistically, expand) my advocacy toward that disease. I embraced purple and snowflakes, the disease’s color and symbol.

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A person wearing a baseball cap speaks using a megaphone.

For this year’s awareness month, ‘Say Sarcoidosis’

For my first Sarcoidosis Awareness Month in 2016, I was eager to jump into everything. When I saw a “purple challenge” asking people to post a photo of something purple on social media, I took it a bit further, wearing and posting something purple every day that month. In the years since, I’ve created “Walk ‘n’ Roll” events (like walkathons, but including those of us who use wheelchairs or scooters), hosted support groups, organized awareness trips to New York City, and gotten proclamations in my county.

When the world shut down because of COVID-19, I shifted my efforts to virtual ones, with special-guest Twitter chats and podcasts, as well as social media posts featuring Self-Care Sundays, Mental Health Mondays, Warrior Wednesdays, Fun Fact Fridays, Sarc Strong Saturdays, a Caregiver Corner, and purple power posts in between. (What can I say? I like alliteration!)

As of this writing, I’ve got none of that this year.

My contributions this Sarcoidosis Awareness Month

For the past several months, I’ve been so busy finishing, publishing, and promoting my book  that I haven’t had much time for anything else. But I’m going to claim the book as a sarcoidosis awareness activity since it includes stories from several people with the disease.

I co-hosted a podcast last week with the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis). Our focus for this episode, which will be available Sunday, April 7, was “Social Wellness with AiArthritis Diseases.” While it’s easy to say how these diseases negatively affect our social lives, we also discussed low-energy options to combat the isolation we so often feel. Since sarcoidosis is the primary cause of my inflammatory arthritis, I’m claiming that for my Sarcoidosis Awareness Month efforts, too.

And of course, there’s this column.

But I don’t have it in me to do more right now. And I’m trying to be OK with that.

I’m giving myself emotional whiplash, going back and forth with this idea. I need to be OK with doing less, but I also feel I need to do more. We all matter, and we all have value without having to work for it, but I feel I have to justify that by working hard enough to make it so.

When I think about it, life with sarcoidosis is filled with this type of predicament.

I was trying to explain it to my physical therapist just this afternoon. I’ve been flaring with severe pain and fatigue, so I haven’t been able to do my exercises — and because I haven’t been doing my exercises, I’m having more pain. Together, we’re trying to figure out just how much we can push for improvement without it backfiring into an even worse flare.

Raising awareness brings about another paradox. The reason I feel I can’t do much is the reason that I need to.

Like so many others with invisible illnesses, I look fine on the outside. To the untrained eye, I’ve got it easy: I have a wonderful husband who takes care of me, so I don’t need to have a job and can just relax at home doing whatever I want.

But that’s far from my reality. I do have a wonderful husband who takes care of me, but that’s because I need him to. “Relaxing” at home is more like shifting around on the sofa for hours, trying to find the least painful position, fighting to stay awake yet unable to fall asleep, reading the same paragraph five times because brain fog has left me unable to process it. It also means looking around at the mess I’m not able to clean up.

Raising awareness means telling my story and sharing the reality of my life with sarcoidosis, but living with sarcoidosis means that I can’t raise awareness all the time. This month (and beyond), you can help with that. You can share my story, or better yet, share your own!


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.

Comments

Michelle avatar

Michelle

I really needed this column right now. Balancing what I can do with what I want to do is an ongoing process. It is so easy to blame myself or push too hard and then feel worse. Like you, I have a lot to be grateful for and still quite a few challenges. Thank you for your insight.

Reply
🦋 Kerry Wong avatar

🦋 Kerry Wong

I’m so glad this could offer you comfort. This feeling (and this reality) is so much more common than any of us realize. You’re absolutely right – it’s so easy to blame ourselves and push too hard. We’ve got to learn to offer ourselves the same compassion and understanding that we would give to someone else. Try to keep your head up – you are not alone.
~🦋

Reply
Ann Marie Remillard avatar

Ann Marie Remillard

Thank you for sharing your inspirational story. I too have sarcoidosis, CHF, osteoarthritis, RA, type 1 diabetes. addison's disease, stage 3 kidney failure,etc. And yes some days I can barely get out of bed because of inflammation. I have been paralyzed (4) times with the 1st one being from guillian barre syndrome. Although I feel blessed every day when I wake up. Most people don't know all my illnesses which sometimes is frustrating for they often tell me I look good when on the inside I am suffering. I call sarcoidosis my invisible disease except that people see my oxygen tank. I would like to know how to raise awareness? And have people understand what exactly people go through daily. Please keep up with all your advocacy for Inknow it must be hard on those days you have no energy.

Reply
🦋 Kerry Wong avatar

🦋 Kerry Wong

Thank you, Ann Marie. It is so hard when people don't understand, when they don't see it because it's all happening under the surface. I think the greatest way to raise awareness is to just start sharing your story - as much as you feel comfortable, wherever you feel comfortable. That could be a Sarcoidosis event, a private online Sarcoidosis group, a conversation with friends or family, an e-mail to your elected officials. The great thing is you never have to do it alone.
~🦋

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Denise H Wilson avatar

Denise H Wilson

I needed this today. I usually deal day by day and keep on going. My faith in God and my church family are wonderful but if you don't walk this disease you just can't understand. This has just been a hard week.

Reply
🦋 Kerry Wong avatar

🦋 Kerry Wong

I'm sorry this week is so challenging, but I'm glad I could offer a bit of comfort. Sometimes we just need to speak to (or hear from) others who are living it, too. The good news is we're always here. Thank you for floating here with me.
~🦋

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Suzanne Hay avatar

Suzanne Hay

Hi Kerry, I have been reading & following your column for the past year & have been truly inspired by what you’ve managed to do & accomplish. I’ll be excited to read your book. I’m in my 56th year of sarcoidosis & following many many trials & heartache with this never ending insidious disease & while I’m now pretty much immobile, with never ending pain i too still need to learn when enough is enough. But i also feel proud that I’ve made myself have a very real happy productive life. I really look forward to your happy & joyful words. All the best & please remember to take care of yourself.

Reply
🦋 Kerry Wong avatar

🦋 Kerry Wong

Thank you so much for those kind words, Suzanne. I think part of why it's so hard "to learn when enough is enough" is that it's not one clear and definite point. It can change so easily from day to day, where doing the exact same thing can invigorate us one day and exhaust us another. You must have seen so much change in this disease and how it's managed over the past 50 years ... but most importantly is that you've created a happy life for yourself. That is a wish for us all.
~🦋

Reply
KIRAN JOSHI avatar

KIRAN JOSHI

Hello Kerry, Wow what a wonderful read, i will surly be getting your book. I have been diagnosed with Sarcoidosis since 2020 and currently going through a lot of hospital appointments. Its good to know that there are people like yourself working hard to make this horrible disease awareness.

Thank you

Kiran

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🦋 Kerry Wong avatar

🦋 Kerry Wong

Thank you, Kiran. It can definitely be overwhelming when there are so many appointments to manage ... but you are definitely not alone in this!
~🦋

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