Into the Unknown With My Rare Disease

I had a dream (or was it a nightmare?) last night about my disease symptoms increasing rapidly. I woke up blurry-eyed, slightly bemused that this had entered my dreamscape and resigned to the unknowns of living with chronic illnesses.

I've lived with the unknowns for as long as I can remember. Sometimes the not knowing what is to come is helpful – you try to do what you are able to do at that moment in time. Sometimes, the unknown is frustrating, like trying to plan and being thwarted.

5 ways to manage the unknown of my rare disease

Here are some things I try to do to manage the unknown of my medical conditions.


Admittedly I am an information geek at heart, but knowledge is power. Searching both scientific sources and patient advocacy groups can be a powerful source of information that helps inform my decision-making process in the face of unknowns.


As someone living with a few different medical conditions that can sometimes be completely separate and sometimes can interact with each other in unexpected ways, figuring out the many knowns and unknowns is important information for certain clinicians or providers to know. They don't need to know my entire medical history, but what they do need to know is different every time.


I plan lots of things due to my rare disease. I plan my medical appointments around work and other obligations; I plan my medicine-taking routine; I even plan my social media posting around the plethora of awareness days. (I still want to know why we have a week and 2 separate months for a condition I have, though!)


Sometimes, the best-laid plans go awry, and the anxiety of that when you have a rare disease is a real challenge. I have dealt with weather delaying my next treatment, changes of doctors and nurses in charge of my treatment (nothing like being put with all the awesome specialists because of your rare disorder and then them all retiring en masse!), and so many more potential roadblocks to accessing and sustaining care. But I have found ways to continue this journey.


As much as knowledge is power, connection is power. Figuring out what that connection is, how it is sustainable and not draining, and what it can do for me was powerful. My relationship with this participation has changed as my life has changed. I went through a lot of account cleansing. I went through a few major personal and professional reckonings with what I wanted to put out there. And now I think I have a balance, for me and for now.

These guiding principles help me navigate life

These 5 Ps (because who doesn't love a list that matches!) are helping me navigate the unknowns of a rare disease and the everyday unknowns of life.

Sometimes I do it more successfully than others; I get sucked into the what ifs, should haves, and social media advocacy anxiety, but the guiding principles I've laid out for myself help me reset.

How do you navigate the unknowns of life with a rare disease? Do any of these 5 Ps resonate with you? Tell us more in the comments below!

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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