Better Together

I have been blessed to mostly surround myself with people who are willing to be my friend in spite of my rare chronic diseases. Most friends didn’t even know about them when we first met - or I didn’t have a diagnosis yet depending when they entered my life. While my diseases do not define me they do impact how I can interact with friends - they run menus by me before we come for dinner - not so I can eat but so I can simply breathe the smells that will come from cooking - or at the last minute they come to me when I am having hard days so we can just hang out instead of taking a grand adventure - and even in their most important life moments- when I can't travel to be with them they find ways for me to be present on face-time or zoom.

I have had only a few friends clearly give up on me because of my diseases -at the time I told myself  they were never real friends -but If I am being honest it doesn't make it less painful to think that I wasn’t worth keeping around because my rare diseases were too overwhelming for them. Sadly, this is part of the rare disease life, part of our losses are not just food and travel - but people.

But I also know-my family and friends who have stuck by me always- are the reason I have gotten through some of my hardest moments - knowing that no matter the outcome they catch me - without hesitation- without my having to ask- they just show up- in person when we are in the hospital or on text when I am mid-reaction at 2am - or when a new pair of socks arrive on my doorstep.

It feels in our current reality that there has never been a time that feelings of support are more needed by us all. Both in checking in on each other and helping each other navigate our first pandemic together.  There is no handbook on this- and there will be many in our communities -for a variety of reasons like me, that will not open up as fast as the rest of the world.

Some days right now I feel similarly left behind like I did at the start of my illnesses- watching as others so seamlessly re-enter life while of course, still taking the necessary precautions.  For me - even with
those precautions not everything feels safe.

I know as school and work decisions loom we will all continue to make choices that look different from one another.  No choice is easy to make- no choice is perfect- and no choice is wrong (unless of course
it is not to wear a mask in public-then it is).   But this week I sense my old fears creeping back - when I started to make decisions based on my rare diseases I would worry that in choosing differently I would lose friends or a feeling of community.

And while I now know, my early fears were unfounded-as most people stuck with me-I challenge us all to remember to not forget to show up for one another - to lift each other up with care and support -so that
we all feel safe during this challenging time- and can find comfort in knowing that our friendships and communities will not be another loss we experience because of COVID- but instead that they will be what carries us to the other side.