Why I think it is good to be diagnosed with a rare disease

Why I think it is good to be diagnosed with a rare disease

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Today, February 28, is rare disease day. This day has been designated to raise awareness about rare disorders, of which impact about 1 in 12 Canadians. By definition, a disease that effects less than 1 in 2,000 people is considered rare and there are about 7,000 different rare diseases documented in Canada (Canadian Organization for Rare Disorders). 

You may not know it, but I have been diagnosed with a rare disease. In  2015 I was diagnosed with sarcoidosis, an auto-immune disorder that causes granulomas (small clumps of immune cells) to build up in different places throughout the body, including but not limited to the lymph nodes, lungs, brain, eyes, skin, liver and bones. The etiological agent (the root cause) of sarcoidosis is not known and there is no cure. Sounds scary right? 

Sarcoidosis, like many other rare diseases, can often have pervasive and sometimes devastating impacts to those afflicted. Personally, most aspects of my sarcoidosis have not been pleasant, while a few experiences been very painful and scary, but in some ways sarcoidosis has actually touched my life in a positive way and I think it has helped me to be a better person. 

So, on this special day to raise awareness about rare diseases, I would like to describe how sarcoidosis has changed me for the better. Below is a list, in no particular order, of some of the insights I have gleaned (so far) from my personal sarcoidosis journey. 

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I am not in control (of everything all the time)

This was a hard-learned lesson for me and something that I am still working on daily. Most days I am mainly in control, but on rare days, no matter what I do, sarcoidosis steers the wheel. Since being diagnosed, I have come to accept that I do not have 100 % control over every aspect in my life, and that is okay. 

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Life is finite - live life to the fullest 

There is nothing more eye-opening that realizing your own mortality. Once humbled by the knowledge of what will most likely cause my own death one day, living life has actually become more meaningful. Now I love more wholeheartedly, laugh more deeply and allow myself to feel with more emotion (happy or sad). 

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My energy is precious - aka: Spoon theory 

People with auto-immune disorders often suffer from debilitating fatigue, ether periodically or all the time. Reduced energy has forced me to eliminate activities and relationships that are draining. Sarcoidosis means that now I must put me first and no more people pleasing or one-sided relationships! 

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Time is better spent doing the things that make YOU happy 

Sarcoidosis has helped me to identify what makes me truly happy. Ever since I was diagnosed I have been writing more, dancing more and refocusing my career to ensure my work is truly my passion. 

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It is not the end of the world - just breathe 

At first, being told you have a rare disorder can sure feels like the end of the world. The mind starts to spin with a tornado of "what ifs??" and worst-case scenarios. To avoid spiraling into a state of constant depression and anxiety, I have had to learn to breathe and just take things one day at a time. 

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 Deep appreciation for my support network 

I consider myself to be a fairly independent person, I can handle a lot and I don't often ask for help. When my doctor told me that my lung and lymph node biopsy confirmed sarcoidosis, it was like someone had let the wind out of a balloon, I felt so deflated. The support and love of my family and my partner picked me up when I fell down. It is a powerful feeling to know that other people have got you. 

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Reaching out for help is important

I have met so many wonderful people through social media. Linked by a rare disorder, others also suffering with sarcoidosis from around the world have become like my second family. 

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Increased empathy towards others 

Through this journey I have gained more empathy for others around me. I recognize that I may not know exactly what is going on inside a person at any given time, so I put my most patient, understanding and compassionate self forward. 

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Not everyone with a rare disorder receives a diagnosis 

I no longer have to describe a laundry list of life-long, and seemingly unrelated, symptoms to a health care practitioner upon first meeting. Gone are the days of the eye-rolls, the side-ways glances and the ever popular "have you tried going gluten-free?" or "you don't even look sick". Thanks to my diagnosis, I now have the power to say, "I actually have an auto-immune disease, it is called sarcoidosis." 

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In closing, I would never have chosen to have sarcoidosis. Yet, I cannot deny, that this experience has had a profound and positive affect on me. If you enjoyed this blog please let me know and to learn more or make a donation please visit: https://www.raredisorders.ca/

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