What I Want My Loved Ones to Understand About Sarcoidosis

What I Want My Loved Ones to Understand About Sarcoidosis
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Dear family, friends, and caregivers,

First, I want to thank you for being people I can count on to help me through my health issues, and I apologize for putting you in this situation. Dealing with a chronic condition has taken a lot out of me, and I’m sure it’s been quite a challenge for you, too. I felt it necessary to express some things that are important to me, and I hope you can understand how I feel. 

As you probably know, I haven’t always had this medical challenge. Pulmonary sarcoidosis just happens — it’s no one’s fault. This disease slowly steals my breath and challenges my breathing, so if I’m moving slowly and deliberately, please don’t become impatient. I’m doing the best I can, because I’m still adjusting to my new normal. Before this lifestyle change, my physical abilities were top-notch. Unfortunately, this is where I am at now. 

I constantly deal with stress and anxiety. What you may not realize is that oxygen deficiency can cause a person to panic. Breathing is an involuntary action, and when it’s compromised, your mind can play tricks on you. If you notice me breathing in a deliberate fashion, please understand that this is my normal practice, and your impatience can increase my stress and anxiety levels. I ask that you not raise your voice or become cross with me. I’m still learning about this health challenge and how to adjust to it. 

Sometimes I may ask for help or assistance, and believe me, that’s hard to do. What you may not understand is that my health issues limit some of the activities that I’m used to doing independently. My independence keeps me going, so please don’t limit, compromise, or take that away. It reinforces my sense of purpose. It makes me feel relevant. 

Lastly, please understand that your dedication and support are greatly appreciated, but I am my biggest advocate, so trust my self-assessment of my physical health. Although I rely on you for support and assistance, please understand that I have to fight this battle alone. It’s both a medical and mental struggle. I often challenge my physicians’ assessments. The constant testing of my physical abilities takes a toll on me. It’s just another “brick in the wall.”

It’s often said that a person will show you who they are rather than telling you. Believe them! Actions speak louder than words, so we tend to pay more attention to how folks treat us. I know that you have my back, and I appreciate you more than I can say. But every so often, please try to understand how much the little things mean. On the inside, I’m still the same person that loves to laugh and enjoy life. On the outside, I’m just a work in progress.

Thanks for listening!

Sincerely,

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.

Charlton is an independent multimedia/video producer and video editor located in the Philadelphia, Pennsylvania, area. He was diagnosed with pulmonary sarcoidosis in 2004 at the age of 40. He has worked over 30 years in advertising and educational media. When he’s not creating, he’s in the kitchen cooking. Charlton is known as a skilled pit-master, homebrewer and jazz aficionado. He hopes his column on sarcoidosis will help inspire readers to live life the best they can, and not shed any tears for this illness.
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Charlton is an independent multimedia/video producer and video editor located in the Philadelphia, Pennsylvania, area. He was diagnosed with pulmonary sarcoidosis in 2004 at the age of 40. He has worked over 30 years in advertising and educational media. When he’s not creating, he’s in the kitchen cooking. Charlton is known as a skilled pit-master, homebrewer and jazz aficionado. He hopes his column on sarcoidosis will help inspire readers to live life the best they can, and not shed any tears for this illness.
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19 comments

    • Charlton Harris says:

      Thanks for reading, Gayle. Sometimes we have to remind folks what’s important in our living. Keep moving!💪🏾👍🏽

  1. nadia silvera says:

    This is right on point. You expressed exactly how I feel and what I would like to say to my loved ones. This is a hard thing to cope with but we must be strong and steadfast on getting through it. Faith and hope in this journey. Stand tall and strong! We will conquer this!

    • Charlton Harris says:

      Thank you, Nadia. We can do this if folks understand all we go through. Keep moving and we’ll show them who’s the toughest!💪🏾👍🏽

  2. Debra P. says:

    Well said, Charlton! For the first time since being diagnosed in July 2019, I finally told my Pulmonologist “this sucks”. Saying that was empowering! What you just shared was a powerful message.

    • Charlton Harris says:

      Thanks, Deb. Yes, this sucks but it doesn’t define us. As long as we’re breathing and moving, we’re living… and that makes all the difference!👍🏽💪🏾❤

  3. Kevin R Pistey says:

    I have been living with sarcoidosis for 37 yr this month. Charlton you have captured my daily life since then exactly as I wished I could have described it. My close friends who went through this with me understand and help. But there are many Dr.s out there who have never seen it, and unfortunately for me it has affected my joints as well as lungs. it is difficult to constantly answer the question “What did you do?” I love my medical providers, they listen but there is little they can do. Even still my life so far has been great, thanks to people like you-everyone of you.
    Kevin P.

    • Charlton Harris says:

      Thank You so much, Kevin. As long as we all keep moving, AT OR OWN PACE, we’ll get through this and WE’LL KEEP LIVING!!💪🏾👍🏽

  4. Marie says:

    Wow! Excellent piece. I showed this letter to my husband. He said, “Did you write this.” He has been living with my scarcoidosis since 1998.

  5. Paul says:

    My mother passed away last year after a 20 year fight with sarcoidosis and the complications that came with it. I really appreciate this post because it reminds me of the day to day interactions we shared. You have to have patience and understanding with someone who has this terrible disease and one the best ways to do that is to educate yourself as much as possible about your loved one’s ailment and then do everything to can to make their life better.

    • Charlton Harris says:

      I’m so sorry to hear about your mother, Paul. Thank you for realizing that loved ones need to educate themselves about what their loved ones are faced with on a daily basis. Thank you for understanding and I’m thankful you had the patience and love to help with your mother’s journey with this condition.
      💪🏾👍🏽

    • Janet says:

      Thank you , I wish all 3 of my children could understand and care as they are not understanding at all which makes my life harder now that I have lost my husnad. Of 45 yrs

  6. Lynn McKenzie says:

    Thank you for sharing your feelings. I started therapy right before the pandemic but had to stop.I hope to have my family members read story so this may help them understand what I’m going through.

    • Charlton Harris says:

      Thank you for reading, Lynn. I, too had to stop going to the gym when the pandemic hit. But the secret to getting ahead of this is to keep moving!! Even at home you have to keep moving; otherwise, everything becomes more difficult… and we don’t want that. KEEP MOVING!💪🏾👍🏽

    • Charlton Harris says:

      Hey Liz, over the past 3 years, pulmonary sarcoidosis has become a chore in my life, and my wife and kids don’t get how it effects me. That’s why we have to keep moving and staying resilient!

  7. Jennifer says:

    Wow I love this! It feels like I’m in my husbands head right now. My husband has sarcoidosis for 5 years and I believe the Drs said he has Pulmonary fibrosis and Drs. think he has something else that is having a hand in his sarcoidosis illness. He just switched up he’s terrible sleeping habits into a routine but I’m noticing he’s struggling trying to stay awake during the day which affects his behavior and I’m trying my hardest to be there but it’s rough cause I’m 7 months pregnant and in need of his loving support as well. All in all I think it’s just rough for the both of us right now. I don’t want to be selfish with my feelings while he’s suffering the most. How can I get the support i need while giving him the support he needs? Any advice would be great 😌

    Sarcoidosis Warriors are my hero’s!! 💜

    • Charlton Harris says:

      Hey Jennifer!
      I’m sure a lot of what I wrote is in your husband’s head-the trick is, that you know it’s already there. I’m glad that I was able to share some of what we’re thinking, and it’s important that people understand some of what we go through. What I can say is to keep being the calming force that he needs. I’m sure it’s not that easy being pregnant, but I think what some folks don’t understand is that being a calm and patient voice is all we need. Empathy goes a long way. Don’t treat him like he’s a “chore”, but understand that this illness makes us feel inadequate at times, so not being reminded of our vulnerability is helpful. I’m sure most of his concern now is how to be the best parent he can be. . . you can reassure him that he “will” be the best family-man that you can ask for. Patience is the best support!

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