Coming out (for the second time)

The best way to set up this post is by lifting a quote; in this case, double-lifting: first from the author who penned it then next from the blogger who drew her blog title from it.

"Finally, I suspect that it is by entering that deep place inside us where our secrets are kept that we come perhaps closer than we do anywhere else to the One who, whether we realize it or not, is of all our secrets the most telling and the most precious we have to tell." Frederick Buechner via Telling Secrets telling-secrets.blogspot.com

I have been considering over the last several months, how to broach and discuss  a particular topic.  That topic is, depending on one’s viewpoint, distressing, alarming, terrible, a life preserve thrown out to those who need it, strengthening, enlightening, or interesting.  Or a whole other host of possibilities.

When I came out as gay, it was actually an easy process.  Nobody much minded, it was not a point of contention or concern in my family or among my closest friends.  It was a smooth process for me, thankfully.

But, I’ve been considering over the last several months what a grace I experienced then by coming out: it helped me and it helped others.  It gave a name and a face, it made me available for others when they came out, because they knew I had experienced it myself.

And, seeing all the good it did for me and for others, it leads me to believe that coming out, telling secrets about our lives can be both liberating and a means of grace for others.

With that in mind, I have a secret to tell; I have something else to come out.

My mother always told me that I’m special (I suppose everyone’s mother did), and she was right, though not in the way she likely meant it!  I certainly have a very special immune system.  My immune system is challenged to differentiate between healthy Jason cells and foreign invader cells.  Because of this, my immune system has a habit of attacking perfectly healthy cells in my body.  Like any time that your immune system is engaged, what follows is inflammation, fatigue, and the successful destruction of targeted cells.  However, the targeted cells in my case are healthy cells in my body, so there are problems.

There are millions of people who have autoimmune disorders, and those disorders sometimes come with other autoimmune disorder cousins.  I’ve never checked the medical literature, but I think that my disorder clumping is highly unusual.  For you see, even though they are all spring from my immune system attacking healthy cells, in my case, my immune system is very pro-active and attacks not just one type of healthy cell, like in a single autoimmune disorder, but earns extra credit by attacking all over the place.  That means that for over a decade I have been diagnosed with, living with, and undergoing treatment for a cluster of autoimmune disorders 

• multiple sclerosis     (in some parts of my brain and spine, my nerves no longer function correctly)

• psoriasis                 (there are a few painful spots on my skin, though almost entirely in places covered by clothing) 

• psoriatic arthritis     (very similar to the better-known rheumatoid arthritis, so swelling in my hands, feet, spine and sternum)

• pernicious anemia    (my body lacks the protein required to process B12 from food, so I need to inject it)

• ocular migraines      (sometimes, I go blind for about 15-30 minutes, and have a slight headache)

That’s a lot of body systems!

So, a brief mention of why this has been a secret in the past: I cannot stand the pitying looks I experienced when I first shared this over a decade ago when my symptoms began. The last thing I wanted was to be treated like or even thought of an invalid.  So, after those initial reactions I experienced, I stopped telling people.  Most of the time, nobody can tell that I’m living with these diseases, and so I kept it that way.  Some of my close friends and family know, but not everyone.  It’s not the sort of thing I would bring up at a party, for example.

So, why am I outing myself now?

It has been evident to me for a while that others are living with chronic disease, and that the burden they bear is partially due to feeling as if others around them do not understand or appreciate what it’s like.  For some, diabetes forces them to change the way they eat; for some, chronic pain means that they need to modify their activities, for others, it is heart disease, depression, HIV/AIDS, asthma, Crohn’s disease, etc, etc.  If you think about it, there are few of us not affected by chronic disease: either in our own health or the health of our families.  This is also something that affects all age groups, races, genders, and sexualities.  It is equalizing.

So, I’m coming out in order to let everyone know that I live with chronic illness, and am happy.  I have had to make changes, yes.  The treatment is difficult and at times, very onerous.  But I have grown to be more stalwart and, ironically, more flexible.  I’ve learned to accept initial limitations, then excel beyond them.  I am no longer bothered by pitying looks because I do not pity myself.

I also am outing myself to let those struggling with chronic disease in their lives or the lives of their loved ones, that in me you have a compatriot, a friend, and an advocate.  Each week I offer healing prayers at St Paul’s Cathedral, and pray for those who come forward, that they may know the healing power of their God.  It is important for me to acknowledge my own need for strength and healing power, so that I might extend it to others.

And what are you supposed to do about it?  Well, sometimes this all makes people feel uncomfortable.  So, you don't have to do anything.  You don't have to comment or say anything when you see me.  Some of you may want to, and that's ok, too.  I'm not interested in you making a spectacle of it, but if you need to, I'll muddle through.  You can even look at me or think of me with pity; it's a pretty useless thing to do, since it bounces right off, but you may do what you need to.  You may want to talk, and that's great, or you may know someone who you think would like to talk: send them along.  I'm not telling everyone this in order to require any reaction from you.  I'm telling it because it is part of my integrity, and my desire to be available for others.

So, if any of you have secrets to tell to your loved ones, if any of you have vulnerabilities to share that you worry will lead to judgment or angst: now is the time to resolve to bring them into the light.  We often present ourselves behind masks of strength, power, flawlessness, and perfect ease.  We are not those things.  The more that we announce our weaknesses, the more that we (and others) will experience us as empowered, rather than vulnerable.