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20 Things I've Learned Since My Sarcoidosis Diagnosis

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A few days after a muscle biopsy procedure my doctor called and delivered the name of my mysterious internal antagonist: Sar-coy-something.

As I scratched down its letters on the back of a Chinese takeout menu, he explained the intimacies of my disease, offered some reassurance and outlined a plan of attack. When the call ended, I did what most modern creatures do — I opened my laptop, summoned Google and misspelled my disease in the search bar.

S-a-r-c-o-i-d-o-s-i-s is an autoimmune disorder that inspires little knots of inflammation to gather and break dance in joints, muscles, lymph nodes and vital organs. Steroids are often used to treat the symptoms of sarcoidosis. According to the Cleveland Clinic, 10 to 30 percent of sarcoid patients have my kind of sarcoid: the chronic kind.

In my struggles with this often misspelled disease, I’ve learned a few things. In fact, my disease has been (dare I say it…) the best (…and by best I mean most relentless, humbling, homework-on-the-weekend) teacher I’ve ever had.

I’ve been a student in the school of sarcoid for a little over a year now.

In that time, I’ve experienced anger, confusion, regret and have been so disenfranchised with the entire medical community that I refused to watch “Grey’s Anatomy.” Yet ironically, since my diagnosis I’ve learned to more fully appreciate the value of love, the importance of humor and that sometimes simply getting out of bed is the bravest thing you can do.

Please understand — I’m not an expert. I’m a C+ student still struggling to comprehend the curriculum. But since my enrollment, I have learned a few things about coping with a chronic illness that I would like to share…

1. When you’re in pain, it’s OK to be selfish and take care of yourself.

2. Talk openly about your illness. Your advocacy will help others

3. You may need to modify your eating habits.

4. Just because you feel like crap doesn’t give you the right to be a jerk.

5. You may not be able to control your illness, but you can control how you respond to your illness.

6. Keep a journal of your symptoms.

7. Keep your doctor’s appointment.

8. Schedule morning doctor’s appointments and celebrate the appointment with lunch. If possible, have a beer — you deserve it.

9. Be a self-advocate. Ask your doctor questions and demand answers.

10. Network with other patients.

11. Don’t be ashamed of your disease. Everybody is dealing with something.

12. Have your doctor write you a letter detailing your symptoms (and if applicable, give the letter to your employer).

13. Accept your illness. Denial will only compound your pain.

14. Be kind to others. Kindness is a great distraction from your pain.

15. Be patient with your medication — sometimes finding the right medication can be a long, tiring process.

16. You’re tougher than you think.

17. Do something constructive — find an outlet for your pain.

18. Use the internet as a vehicle for seeking support.

19. Read medical journals — even if you don’t understand every word.

20. Continue to hold yourself accountable.

Follow this journey on Write On Fight On.

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Originally published: June 18, 2016
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