National Invisible Chronic Illness Week: How my Illness Affects my life in Church

I found out just now that someone out there has decided that this week is "National Invisible Chronic Illness  Awareness Week".  At my house, every week is invisible illness week.

So, I decided to use my blog to participate in raising awareness.  I'll try to blog something more than once this week.  If possible, every day.

Today I am going to write about how my invisible illness (fibromyalgia with the bonus feature of mono this year) affects my participation in my Church.

It's hard.  Writing this makes me sad.

We moved to this community three years ago, and I hardly know most of the people at Church.  We go to a large parish, and it's been really really difficult for our family to integrate into the community, and a LARGE part of that difficulty has been due to my invisible illness.  The rest of it is due to my children's  and husband's autism issues, which has its own host of fun stuff, MANY of which overlap with mine.  

I get invitations to all sorts of wonderful get-to-know-you opportunities, that I just can't participate in:  Baking for the Taste of St. Michael's, the "Parsley Party" to get ready for the cooking to be done, dancing in some folk dancing group...all those things sound like SO MUCH FUN.  If I did not have my invisible illness, I would SO be there!  I would love to dance!  I would really love to bake, and snip parsley with the ladies!  I would love to volunteer to serve food, too, and be a part of things.  But this year, my invisible illness is making it impossible even to volunteer for a few hours at my parish's ethnic festival.  I'm sad about that, but there's nothing that I can do to change it.  My invisible illness prevents me from signing up for anything or joining anything.  I just am too sick. 

And all those missed opportunities, are missed opportunities for getting to know the folks at my parish.  When I can't be there, I don't get to chat with people and I don't know them, they don't know me, and we remain strangers week after week.  I'm just the tired ugly woman that drags herself into Church each week.  But names?  I know hardly any names.  Because I don't get a chance to hang out and bake and cut up parsley.  And when someone does occasionally offer me their name, it flies out of my foggy brain, thanks to my invisible illness.  

I used to sing in the choir.  I love to sing.  I could barely do it with my invisible illness and on some Sundays I would sit in the back of the choir loft if I needed to, but since I added Mono on top of my invisible illness, there's no way.  Choir gave me a sense of belonging.  I miss it.  I miss the community of people that is choir.  Now I'm not a part of anything.  I feel like I don't even belong.

I miss a lot of Church due to my invisible illness.  I was raised to be the kind that went to Church every time the doors were opened.  At St. Michael's that would be every day!  For a while I was going to Matins...but Mono put a stop to that!  On some days, I would also be able to make it to Vespers.  But lately, my invisible illness  has invariably shut me down by around 4 pm and there is just no going to Church at six when you are so tired you can barely lift your head off the pillow of the couch you are lying on.  For weeks, I would wake up on a Tuesday or Thursday and think to myself:  "Today I will go to Vespers!"  But then my body would shut downin the afternoon, and the fatigue and pain would take over, and there would be no going to vespers.  Eventually, I think, I stopped hoping and planning.  I just gave up.  One time I was attending a class on the Church Fathers, and the lecturer decided to hold the lecture in the chapel, after a prayer service.  That was a lovely idea, except for the fact that due to my invisible illness, I could not stay in there...the benches in the chapel are NOT designed for someone with an invisible illness to be able to sit without total body pain  (at least me).  I had to leave half way though.  I felt like my invisible illness forced me to be rude.

Whenever there is a great feast, we try to attend the Vesperal Liturgy.  But I am usually choosing:  Do I eat a snack so that my body has enough energy to BE THERE...and then not take communion because I have not been fasting that afternoon?  Or do I fast and then not have the energy to even GO to Church?  Quite the ironic conundrum.  Thanks to my invisible illness, there are many times when I don't take communion.

My invisible illness is also a challenge for me, because I get a bad attitude.  I know on one level that people care about me, but due to my illness I feel so isolated and alone, that I get a chip on my shoulder.  And then my sinful self hears things people say with the worst possible spin:  "you look great, are you feeling better?" ...I hear it as "Are you finally well yet so that we don't have to hear you whining about your stupid invisible illness?"  I know that is NOT what is in the other person's heart and mind when they ask me how I am...but I battle that evil thought in my own mind constantly.  My invisible illness leaves me vulnerable that way.

So, these are some ways in which my invisible illness affects my participation in my parish.  All these things make me really sad, and this has been a difficult post to write.  I hope that someone is blessed by this, or that someone learns something from what I've written.

If I had a wish list for Churches, it would be:

-Have a place with some couches in your Church building,  where people with invisible illnesses can sit if they need to.  Folding chairs and pews can be utter hell for some of us.   Lovely would be a place in the narthex where the service can still be heard... One parish I visited one time had a room downstairs with a TV where the service was piped in on the screen.  It was the "cry room" for small children, but such might be nice for the achy and in-pain!
-People with invisible illnesses need prayer all the time every day...just like the shut ins, or others who have chronic life issues.  They should be included on the parish prayer list, even if they are too tired or embarrassed to ask to be on there themselves. 
-It is not ONLY the elderly who might be infirm.  If a young person has a cane, please, don't give that person the yaya stink eye.
-Please consider any building and environmental decisions from the perspective of people with disabilities, include invisible illnesses and total body pain when planning and building new facilities.  Please consider having such a voice or voices on the building committee....and if such an ill person does not have the energy to be on a building committee, it behooves such a committee to seek out the ill and infirm to ask them what their needs are.  
- People with invisible illnesses are often lonely.  Committees and societies might find ways of reaching out to such, but most of all PERSONS need to reach out and include the person with an invisible illness in fellowship, even if it's just having coffee or calling that person on the phone. 


Liadain said…
Good post!
Tomorrow I will sleep in as late as possible, and do as little around the house as possible, so that I can attend the vesperal Liturgy for Holy Cross, the titular feast for our parish... but all my "children" are four-legged and don't require quite so much attention during the day!
Prayers and air-hugs...
elizabeth said…
Alana, I know how hard this is - I have in person friends with FMS and know first hand how it is for them. It sounds like you are also a bit more down than normal - mono plus FMS was super hard for you. I have candles lit in prayer and will remember you by them. I hope you can do something to get a bit out of the blues that are weighing you down. One thing I am very surprised at and I personally think you need to talk to your priest about - if you are so ill that you can't fast for communion I can't see why you should miss communion. your sickness is a harder fast than fasting from food for most people. Do see if you can have some economia about this. if there is anything you should not have to miss it is Christ's body and blood! Lord have mercy.

I am praying that you will receive some encouragement to strengthen you in this struggle.

How are you eating? remember that food has direct impact on emotions and physical health. Keep fighting my dear friend, I know that life can be very hard at times.

Sending you some love and {{{hug}}} over the internet...
pinkpowerlink said…
Dearest Alana, I certainly could not have expressed the difficulties and isolation any better. Thank you for your openness; you are speaking for all of us. I love you, and am praying for you and your family. Looking forward to more of your posts on this subject. Here's a kiss on the cheek!
Alana said…
I'm doing fairly well with the eating...avoiding sugar and obvious carbs for 20/21 meals per week. Wholesome veggies, pastured meat, raw milk, healthy fats, etc. Eating some foods w/ live cultures in them...paying attention to my hunger/fullness signals.
Anonymous said…
Alana, I can't for a minute say I understand. But when I came limping into Orthodoxy (with a newborn baby no less), you were one of the few who befriended me, and I'm so grateful. Praying for you, dear lady.

PS- if it were up to me I'd send a dozen padded chairs from our church to yours. Our nave needs more open space. ;)
Lori said…
Chronic illness takes so much out of everyone involved in the family. I hope you feel better as you fight the mono. I know that our Alena can't make it through church without eating and has been told that she could eat a little something, bread, etc. Please talk to father. We get the large parish feeling too. It is hard for people with anxiety to be in a large setting.
Carolyn Patton said…
Alana, this is the first time I have read your blog. I have awful headaches, and being a pastor's wife, I've often felt real or imagined pressure to be at every service, be in the ladies group, teach the youth, etc. Through the years I've realized that God is the One I want to please, and I know that He understands when I am limited. About the problem of needing to fast before you take communion, our God is a loving Father, I cannot imagine that He would withhold the elements from someone who is ill! Blessings to you! Carolyn
Alana said…
Hi Carolyn, thanks for finding my blog. God bless!