say THIS not THAT

What a workweek!  Last week I got a new project assignment, and have spent most of the weekend, workdays, and worknights crafting a slide deck for a software pitch, including making lots of graphics.  So these statistics infographics I’d been making every day — suddenly I had no creative energy left in my body, heart, and mind.

Tonight’s offering is, instead of a stats graphic, a chronic illness graphic. You can be equipped with better words, instead of saying frustrating or offensive things to a friend who has a disability, a chronic condition, an invisible illness.


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This past weekend, I came across a quotation about migraine. A World Health Organization study had said that a person experiencing severe migraine is as disabled as a person experiencing dementia, active psychosis, or quadriplegia. I read it out loud and said, “Well, clearly mine have only been moderate.”

Then I realized that I’ve driven myself to work three or four times over the last three or four months. That’s pretty disabling.

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today, in american healthcare

… hedwyg is reminded that while we have a marginally acceptable system to take care of acute injuries and illness, neither our health insurers nor our medical practices really understand what it means to be chronically ill.  I have several diagnoses for chronic illness: Ehlers-Danlos Syndrome, Interstitial Cystitis, Chronic Pain Syndrome, Mood Disorder NOS (probably Bipolar Type II).

Two weeks ago, my pharmacy provider sent an electronic refill approval request to my primary care doctor, who has been managing my meds for most of those things for four years now.

UPDATE: FML. But I’m mean, and make you go to the full post and scroll to the bottom.

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Recent happenings

The last few weeks have been packed full.  There’s been some amazingly wonderful stuff… and there’s been some real crap.  I’ll start with the thanksgivings.

I’ve talked for a couple years about becoming a spiritual director, and over the last about-9-months, I became one.  I haven’t been to any classes or training.  It just sort of… happened!  My alter ego (can a Sister be an altar ego?) has had several people come to her with questions, and the relationships formed into just this model.  One is a recent convert to Christianity, who is being baptized at Easter.  Another has allowed me to witness their conversion from not believing to being willing to admit the Divine might exist to believing with all their heart.  Another lives in an abusive relationship.  All are broken, as I am.  All are a bit quirky.  All are very intelligent. All have struggled with depression. I cannot tell you the blessings I have received from this work.  I am in awe at how God can work through us, in such deep and powerful ways.  There’s a major event at my parish church in a few weeks, and I’ve donated 3 months of spiritual companion services (because I much prefer companion to director).  I hope this ministry is helpful for God’s children.

The new rector at our parish is fabulous!  He is plugged in to the Holy Spirit and actively listens for God to point him and our church to our next work for the Kingdom.  And — you’re never going to believe this! — I’ve joined the praise band for our contemporary service.  Yup, I’m playing flute with the band, and I’m having a blast doing it!  I have missed making music terribly, and I’m so glad to be able to serve the church in this way.  It’s been quite a while since I’ve played in jazz bands or done improv, so I’m stretching those skills and taking some risks.  That’s almost always a good thing.

God willing, I will take my life vows with the Anglican Dominicans this summer at Chapter.  I’ve been leading our annual online lenten retreat, on the theme of narrative, and that’s been fun.  I’m finding that our mind-heavy Aquinas-Dominicans are less interested than our more heart-oriented Eckhart-Catherine-Dominicans, but that’s okay.  A couple weeks ago, I heard our new fabulous rector refer to a certain mystic as being “pretty out there,” and shared my (very slight) offense at this with my husband later.  He asked me, “What, you mean to tell you that you aren’t pretty out there?”  I said, “Well, yeah, but he shouldn’t say that about all my fellow mystics!”  Then I laughed at the sheer ridiculousness of this, especially because I’d written a reflection just a week before about mystics and how we’re all sort of “out there.”  I can be pretty protective, but it’s weird to be protective of people (saints, even!) who have been dead for centuries.

I am joyfully living into another new ministry at the parish.  Our “family area” in the nave is in a place where you can’t see the altar, so when the children become bored because they feel excluded from the Important Adult Business — which worship should never be! — they can become noisier and annoy the Important Adults around them.  Being a rather untall person myself, I know how icky it can feel when you can’t see what’s going on.  So I now sit with all the children who want to, right in the center aisle, on the floor, where we can all see what’s happening during the Eucharistic Prayer.  I like to say that we do this because churches are short-sighted that they don’t provide sycamore trees for us, like Zaccheus climbed to see Jesus.  When I used this line with one gentleman at church, he said, “We could do that!”  We had fun exploring what it would be like to have a tree in the middle of the nave: the symbolism, the places to climb and sit, the ways we could decorate it and use it as part of our worship.  It was fun, in a totally liturgy-geeky way.

I continue to work part-time on disability, and I continue to wait for my disability claim to be approved.  It is in appeal, and the decision is due any time now.  Meanwhile, I owe about six months of child support, am perpetually a month behind on my car loan, and seem to stay about a month late on most of our other bills, too.  Some days I want to echo Teresa of Avila: God, if this is how you treat your friends, it’s no wonder you have so few of them!

On Wednesday, I had my second appointment with the new rheumatologist, who turned up an active chronic Epstein-Barr infection.  So that goes onto the diagnosis list, along with Ehlers-Danlos Syndrome, Chronic Fatigue Syndrome, Proportionate Short Stature (yeah, I’m Little), and a severe Vitamin D Deficiency.  I’ve learned some things about these conditions this week, and I’m not quite sure how I feel about it all yet.  For example, I’m finding increasing numbers of people labeling CFS as an auto-immune disorder.  I’m finding CEBV described variously as a form of CFS, a potential cause of some cases of CFS, and as a separate (but similar) disorder.  I’m learning that EBV will become active pretty frequently, but only becomes symptomatic in those whose immune systems are faulty somehow.  I’m learning that there are physical changes in the brains of PWCs (persons with CFS), a reduction in grey matter and increase in white matter — so the “brain fog” and other cognitive effects are not only real, but are based in physical matter.  This terrifies me.  I’ve learned that each recurrence of EBV infection increases one’s likelihood of developing lupus later in life.

The rheumatologist has recommended to my primary doctor that she send me to a specialist in infectious diseases, and I’m expecting to have my immune system checked out as well.  I need a new echocardiogram — these are recommended for EDSers to have annually — and a bone scan.

It’s all just so much stuff.  And oh yeah, here comes Holy Week.  Maplestar and I are ready to sleep until Ascensiontide.  I expect there’s a significant number of clergy and other Professional Christians who feel the same way.

an open letter to physicians, physical therapists, counselors, and anyone else who helps care for me

From my LiveJournal

Dear caregiver,

I respect you.  I really do — you’ve worked long and hard to earn the privilege (and humility) of helping those who are hurting and in need of help.  You’ve had to take specialized schooling and practical training.  You see patients all day long, and I know it can be a drain to be constantly confronted with the pain and misery of others, especially when there isn’t any way to fix it.  You have to worry about regulations, licensing, liability insurance, malpractice insurance, arcane rules of your patients’ health insurance, managing your office, filing all the paperwork, having 15-minute appointment windows to cover 30 minutes worth of care-giving, and trying not to run too late with your appointments for the day.  I get that.

I deal with a lot of stress in my job, too.  You may not realize that each person who comes to see you has his or her own drains and worries.  I’m not able to pick my children up from school because I’m coming to see you, and if we run too late, then I’m going to miss a meeting at work, as well.  I’m worrying about the balance in my Flexible Spending Account, how much my prescriptions are going to cost this month, whether my insurance company is going to deny my claims, and how I’m going to continue to work when my body just isn’t up to it any more.  As a Little Person, I am subjecting my body to all kinds of stress and pain, just by sitting in your waiting room!

Now, I have an inherited condition, and it has resulted in chronic pain.  It’s a fairly rare condition, but nowhere near as rare as your medical school textbooks made it out to be.  Because this is inherited and chronic, I know it can never be fixed, only managed.  I get that, too.  I don’t expect a magic wand or a silver bullet.  What I do expect is to be treated with respect and dignity, just as I treat you.  I expect to be listened to.  I expect to be part of the process of caring for me, not merely a passive bystander in my own care.  I don’t want to be labeled a drug-seeker or a complainer or a problem patient; I don’t even take narcotics, for God’s sake!  I expect you — as the expert and the professional in care-giving — to do some research into my condition, to learn about how it can affect people.  Believe me, I do lots of research on my own, because so often I end up having to educate my caregivers.  I shouldn’t have to do this, but I can understand it.

So here’s the deal.  I choose to come to you for care, to hire you as part of my care-giving team.  It’s a two-way street.  I, and my health insurance company, am paying you to help me.  I am, in essence, your customer.  I also give you complete honesty, open communication, and dedication to the care plan we have established and agreed to.  In return, I expect you to genuinely listen to me, to be completely honest with me — yes, even when that honesty means giving bad news — to communicate openly with me, and to discuss with me the care plan you are proposing, so that we can engage in conversation about what’s working, what’s not working, and what new or different things we might try.

You have a right to refuse to accept my business.  I understand that.  I expect that if you choose to sever our relationship, that you will honestly and openly communicate with me, rather than engaging in passive aggression or other games.  I expect that you will tell me how I have failed to meet your expectations and needs as your patient and customer.

Similarly, I have the right to refuse your service, to fire you from my care-giving team and hire someone else.  I do not choose this path lightly, because you have become my partner in caring for me, and we have developed a relationship over time.  I value that relationship, that history.  I value our partnership.  I value the honesty, communication, knowledge, experience, compassion, respect, and time that you have given to me.  But I will not tolerate a pattern of disrespect or abuse.  I will not tolerate mind games.  I will not tolerate being treated as less than a full partner and participant in my care.

Are you still interested in this position?  Can we work together?  If so, then welcome to the team!

Respectfully yours,

Invisible Illness Awareness Week

2009 Invisible Illness Awareness WeekLast week, I blogged a little about Invisible Illness Awareness Week, which begins today with online conferences and hundreds of bloggers taking time today to increase awareness.

I begin this post, still unsure how I want to use it.  I don’t want to complain about the issues I struggle with, and I don’t want to take a tone of anger or frustration.   I think I’ll just start with some plain old facts, and see where that takes me.

  • My diagnosis, Ehlers-Danlos Syndrome, has a prevalence rate of about 1 in 5,000 people.  This means that about 61,000 people in the US have EDS, and about 1.4 million people in the world.
  • Fibromyalgia is experienced in about 2% of the population, which is about 6.1 million people in the US and about 140 million people worldwide.
  • The prevalence rate for Rheumatoid Arthritis is about 1% of the population, which is about 3 million people in the US and about 70 million people worldwide.
  • Regular old Osteoarthritis affects about 27 million people in the US, about 9% of the population, and is the cause of 25% of visits to primary care physicians in the US.  If that 9% rate is globally applicable, this means that about 630 million people suffer from osteoarthritis.
  • About 265,000 people in the US currently have Leukemia, with over 44,000 new cases being diagnosed each year.   Deaths from leukemia, worldwide, account for about 3% of the 7 million deaths due to all forms of cancers.
  • About 8% to 12% of all people in the world will suffer at least one episode of Major Depression during their lives (in North America, about 17%).  And contrary to what some may believe, Depression can be fatal.  On average, 3.4% of depressed people commit suicide.  So of people currently alive in the US and Canada, about 57.5 million have or will have an episode of Depression.  And of those people, 2 million will die of it.  Worldwide, about 700 million people have or will have Depression, and about 24 million of those will commit suicide.
  • The prevalence of Herpes in the US is estimated at about 1 in 5 adults, occurring in about 45 million individuals over the age of 12.
  • Prevalence of Lupus varies around the world, from 40 per 100,000 people in Europe to 159 per 100,000 people of Africa or Caribbean descent.  About 1 million people currently have Lupus in the US.
  • Nobody is quite sure what the prevalence rate is for Asperger Syndrome, but one conservative estimate places it at 0.26 per 1,000 people.  This is about 79,000 people in the US, and 1.8 million people worldwide.  One estimate at the high end is 4.84 per 1,000 people, which would be about 1.4 million people in the US, and 34 million people worldwide.  The real numbers probably lie somewhere between the two.

Those numbers are pretty huge, aren’t they?  Hundreds of millions of people in the world, millions of deaths, and this is just a small sampling of chronic, invisible illnesses.  The people who struggle with these illnesses are all around us… and we don’t know who is struggling with an invisible illness and who is not.  There are estimates that suggest nearly half of all individuals have a chronic, invisible illness, though they may not all know it or have a firm diagnosis.  Half.  One out of two.  50%.  That’s nearly 152 million people in the US, nearly 3.5 billion people in the world.  That’s why Rest Ministries sponsors Invisible Illness Awareness Week every year.  That’s why I’m blogging today.

The next time you see someone who looks just fine getting out of their car in a handicapped spot, think about these numbers.  They may be part of that almost-50% who have an invisible illness.  Instead of becoming angry and confronting them, consider these facts, and maybe try a different approach.  Perhaps it’s time to try a smile of encouragement, or maybe asking them if they need help.

The next time a family member or co-worker tells you they’re feeling bad, try thinking before you say something like But you look good today! or But you don’t look sick! Be ready to listen, without making judgments, just being fully present in the moment and hearing what they have to say.  What you hear may surprise you.

Or, perhaps, if you are the one in two who struggles with the illness, remember that you are not alone.  Struggling with the symptoms and effects of your illness does not automatically make you lazy or weak or demanding or incompetent or any of that nonsense.  It just means you have to work a little harder than the other 50% of people.  No, it’s not fair, but it’s the life we have to live.  When you need to rest, rest.  When you need medications or ice or heat or a brace or a cane or a wheelchair, use them.   And try to remember that when people say thoughtless things to us, it isn’t necessarily a sign that they don’t care about us or don’t want us to feel well.  It just means that they don’t know what to say, in the face of our struggles and pain.

Now, go check out the schedule of virtual conferences this week — I’m sure you’ll find something there for you, or for someone you love.  You’ll see these…

  • Understanding how we uniquely deal with difficulties in life
  • Finding health insurance with a pre-existing condition
  • Super foods for super-natural health
  • Hearts of gratitude and joy
  • Coping with chronic illness in your marriage
  • Coping with crises on top of chronic illness
  • How to start a business when you are chronically ill
  • It’s okay to say NO: Building healthy boundaries
  • Parenting when you are chronically ill
  • Simplifying your home and housework
  • Real talk about men and chronic illness
  • Finding the job you desire and can do
  • When your child is chronically ill
  • Managing college with a chronic illness
  • Helping others understand your pain
  • Applying and winning disability assistance when you are chronically ill
  • Being a teenager with a chronic illness
  • Surgery preparation.

That’s quite a line-up, isn’t it?  I’m looking forward to several of these seminars, and I hope you’ll listen to at least one of them.

30 Things About My Invisible Illness You May Not Know

Invisible Illness Awareness WeekThis coming Sunday Monday, September 14, is the kickoff of Invisible Illness Awareness Week.   This week is a project of Rest Ministries, which provides support for the chronically ill in a Christian setting.  Invisible Illness Awareness Week is about both shining the light on invisible chronic illnesses, to help others understand that all around them — looking perfectly normal — are people struggling with a condition that is not obvious to an observer.  The week also provides support, encouragement, and help to those of us who have an invisible illness.  This year’s program is offered completely online, to recognize that it is difficult, if not impossible, for a chronically ill person to fully participate in a week-long conference in person… even if he or she can afford to travel to it and stay in a hotel all week.

As part of the awareness effort, I’m participating in the “30 Things” meme, to share about my invisible illness: Ehlers-Danlos Syndrome.

  1. The illness I live with is: Ehlers-Danlos Syndrome, Classical Type
  2. I was diagnosed with it in the year: 2008
  3. But I had symptoms since: birth.  I remember being diagnosed with “growing pains” when I was about 8, and I started spraining ankles when I was 13 or 14.
  4. The biggest adjustment I’ve had to make is: learning to forgive myself for not being able to do everything I want to do or feel like I should do.  I think most of us are harder on ourselves than on others.
  5. Most people assume: I’m not really sure, since I’m not in their heads.  I do get dirty looks when I park in a handicapped parking place, since I’m young and look “just fine.”  People I’m close to seem to assume that I’m doing fine unless I complain, and I don’t tend to complain until it’s probably too late.
  6. The hardest part about mornings is: waking up to the alarm clock.  I do much better when I can just sleep until I wake up, which is a fairly consistent time anyway.
  7. My favorite medical TV show is: It would have to be Scrubs.  The “serious” shows annoy the bejeebers out of me.
  8. A gadget I couldn’t live without is: my iced tea maker!  And my COMPUTER!  And my arthritis gloves!  And my super-wonderful, long-lasting ice packs!  And the microwave!  Hmm, I should probably stop now, huh?  🙂
  9. The hardest part about nights is: the nights I can’t sleep.  When my hands are hurting badly, they wake me up from sleep, and they’ll keep me awake if I’m not already sleeping.  The worst part of this is that they usually hurt too much to hold a book, so I’m just left there lying in the dark and thinking.
  10. Each day I take 7 pills & vitamins, plus 4 puffs on the asthma management inhaler and 4 sprays of my allergy nasal spray.  (And I know I’m not taking everything I should be.)
  11. Regarding alternative treatments I: wholeheartedly agree with the movement to call these complementary treatments.  I am very careful about herbs and other supplements, especially when I don’t know how they will interact with my medications or with my hard-to-medicate body.  Physical treatments, like massage and cranio-sacral therapy and even sitting in the hot tub, are very helpful for EDS.
  12. If I had to choose between an invisible illness or visible I would choose: You know, I’d actually stick with the invisible illness.  People say stupid enough things to us already (“But you don’t look sick!”); I can only imagine the stuff that pours out of people’s mouths when there’s an obvious illness or appliance one has to use.
  13. Regarding working and career: I am very fortunate.  I work as a software engineer, so I could do my job if I were nothing but a brain in a jar, and my employer has agreed to allow me to telecommute full-time as a reasonable accommodation to disability.
  14. People would be surprised to know: that I am a Dominican Sister, and that my experiences with illness have deeply formed and shaped my spiritual journey.
  15. The hardest thing to accept about my new reality has been: the many little losses that I’ve faced.  Because it’s so easy to dislocate or injure a joint, I’ve been afraid to go out for walks or bicycle rides on my own.  After 28 years, I am no longer able to play my flute, so I’ve had to give up my work playing for weddings and parties.  The days when I’ve had to set aside my plans to rest and tend to pain.  It seems like, as the boundaries of my life grow smaller, I end up starting the grieving process over and over, for each new little thing.
  16. Something I never thought I could do with my illness that I did was: learn to advocate for myself with doctors and with my employer.
  17. The commercials about my illness: ROFL!  WHAT commercials?!?!?
  18. Something I really miss doing since I was diagnosed is: the interaction with my co-workers at the office.  It’s hard to have as little human contact as I do, since I’m working 8 hours a day from my desk at home.
  19. It was really hard to have to give up: MUSIC!  I so very much miss playing flute.
  20. A new hobby I have taken up since my diagnosis is: hmm, I’m not really sure about this one.  I’ve tried a couple of new things, and they ended up hurting and cramping my hands.  I spend more time in prayer now, and I try to spend more time giving intentional support to others.
  21. If I could have one day of feeling normal again I would: finish unpacking after this move, get rid of all the boxes, vacuum the carpets, make a really nice meal, spend time at my favorite museum, and make some time to snuggle with my husband in bed.  Or, you know, something like that.  🙂
  22. My illness has taught me: that having a chronic condition does not make me a weak person, that it’s important to educate myself on my condition and recent research, and that every one of us is broken in some way… even me.
  23. Want to know a secret? One thing people say that gets under my skin is: “You need to…” or “If you’d just…”  Trust me, I’ve done a lot of research into my condition and into possible treatments.  I know you’re trying to help me, but you sound so condescending, and you’re not giving me credit for trying anything that has a chance of working.  If there were a magic bullet, I would use it, but there’s not.
  24. But I love it when people: offer help in small ways.  Open the door for me.  Help me carry in the groceries.  Notice when I’m struggling and give me a hand.
  25. My favorite motto, scripture, quote that gets me through tough times is: He rescued me because he delighted in me. Psalm 18:19 It’s not just that God loves us all, but that God delights in us.  I think about what it feels like when I am delighted, and I am filled with warmth knowing that someone feels that same way about me.
  26. When someone is diagnosed I’d like to tell them: you will be okay.  You will walk through the valley of the shadow of death, but you’ll come out the other side stronger.  There are more of us, and we understand.  Read the Spoon Theory, and take it to heart.  Find support anywhere you can.
  27. Something that has surprised me about living with an illness is: I’m the same person I ever was.
  28. The nicest thing someone did for me when I wasn’t feeling well was: listen to me.  And take out the garbage.  🙂
  29. I’m involved with Invisible Illness Week because: so often, those with invisible illnesses are overlook, mistrusted, or written off as drama queens. It is important to help everyone understand — even ourselves! — that we want to work, we want to contribute, we want to do things.  We’re not just lazy bums who want to lie around all day and collect disability.  Sometimes, we just need to count our spoons and rest a little more.
  30. The fact that you read this list makes me feel: all warm and mushy inside, like a bowl of mashed potatoes and gravy.  Thank you for reading all the way to the end.  Next week, I hope maybe you’ll think about those of us who are invisibly ill.  And I hope you’ll give a hand to someone – anyone – that you encounter who needs a little help.

Love and blessings to you in your journey!