What I Want My Loved Ones to Understand About Sarcoidosis

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

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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.