Invisible illness week -- no sympathy, just understanding

An invisible illness has its difficult side, because no one knows I'm sick.  But that is actually preferable.  There are people that have been burned beyond recognition and survived only to be viewed as a scary monster.  Dealing with an invisible illness and a total change in body image is a most difficult situation and I thank God I don't have that to deal with too.  So I am grateful that I don't have more challenges than I already have.  I don't seek sympathy; it's empathy and understanding that I want.  Just some understanding goes a long way toward feeling a part of something and not feeling so all alone with the burdens that I bear.  I think it's probably the same for you too.  We are all in this eye of an invisible storm that no one else can see.

Sympathy means that someone feels sorry for me . . . I sure don't need that.  And I don't need to spend time feeling sorry for myself either.  That leads to a downward spiral.  The one thing I do need is to take care of myself in ways that others may not even imagine.  I avoid negative people and their negative energy because that takes a big toll.  I listen carefully to my body, because the body rules.  If I ignore what my body wants I risk going into a total fm flare.  That's probably the hardest part, because my brain wants to rule and I have to work at holding it back.  The inability to keep up with others due to low energy is probably the hardest part for me.  I plan my activity very carefully to avoid getting into a flare, because once that starts it's hard to recover and then I miss life as it goes swiftly by.  Socialization takes so much energy and although I thorougly enjoy it, I am always totally exhausted and in pain afterwards.  But it is usually worth it!

So as we raise awareness for invisible illness, I know I'm in good company and that in itself is comforting.  I'm so sorry you are so sick, but I sure appreciate your company.  Take good care and may you find peace in each day.

Coping with a chronic, invisible illness

I frequently read other fibromyalgia blogs and a recurring theme is the frustration that others don't understand this illness.  After all we don't look sick.  When I look in the mirror I see what others can't and I'm sure you do too.  And that's really okay, because do I really want to look sick?  I was talking to a friend of mine several days ago.  We had traveled up to Flagstaff together and the full day really exhausted me.  My friend stated that she was really tired after the day in Flagstaff and I attempted to explain how exhausted I was after the day, but that didn't turn out well.  She said to me, "Oh yeah.  Your tired is worse than my tired!"  I answered, "Yes it is."  She appeared to be completely annoyed with me.  I explained that people with fibromyalgia don't look sick and it's difficult for people that don't have this illness to understand the complete exhaustion we feel.  The reality is people that don't have fibromyalgia have no imagination for how ill we feel and how sick we are.  So once again I find myself resolving to never attempt to explain this to anyone that has not experienced this illness.  We are alone with this illness except for the support we give to each other and to ourselves.  We absolutely cannot count on our family and friends to understand this illness.  In fact, it turns them off.  After all, who wants to spend time with a sick person that incessantly complains they are sick?  Not very many people.

My strategy is to have a great deal of understanding for myself and my friends that suffer with a chronic, invisible illness.  The reality is if I want friends that are relatively healthy then I can't make a face and try to gain their sympathy.  I can't even try to gain their empathy; they aren't interested in giving me empathy.  My friends want to get together with me and have a good time and they don't want me to be a downer for them.  My husband doesn't want me to be a downer for him either and he's the closest person to me.  So, my resolve is to keep my misery to myself, but to care for myself every minute of every day.  That means when I'm unable to participate in an activity I just say "No".  I don't give a reason and I don't make excuses.  I just say "No thanks, but thanks for the invitation."  And when someone complains about how bad they feel or how tired they are I just snicker to myself and knowingly console them with the knowledge that they have no idea how tired and exhausted they could really be.

There is only so much we can do to educate those around us.  The reality is that if we persist in trying to get our friends, family and acquaintances to understand our illness the result is to just turn off everyone around us.  People in our culture like vibrant, young, articulate people.  I can't compete with that so instead I'm a good listener and people tend to appreciate that even more.  So I tell people that I have some deficits because I have fibromyalgia and then I let it go at that.  If they are really interested in me they will take the time and put forth the effort to find out what fibromyalgia is all about.  There is volumes of information available to people.  The truth is that the majority of people aren't really all that interested.  Since we cannot control those people around us we must just let it go and take care of ourselves.  I ask myself "How important are all those opinions anyway?"  Those opinions don't amount to a hill of beans.  There is only one opinion in the world that counts to me and that's my own opinion.  I frankly don't have the time or energy available to invest in someone else's ignorance.  So I happily go through my day and give myself the understanding I need about my ups and downs and I couldn't give a hoot about all those ignorant souls out there that just don't get it.  And it isn't a bad thing to put on a happy face, because we are just about as happy as we make up our minds to be regardless of our trials and tribulations.  Blessings to you as you go through each day with care and understanding for yourself!  Peace to you . . .

Why don't people see my invisible illness?

Did you know that according to the 2002 US Census Bureau approximately 96% of people who live with a chronic illness have an illness that is invisible?  These people do not use a cane or any assistive device and may look perfectly healthy.  It is believed that 1 out of every 2 Americans live with a chronic illness and that doesn't include all the people that have chronic pain.  Even though this statistic is outdated and doesn't include everyone, it is a startling statistic.  So why don't we see these people and why don't they see us?

For people that are chronically ill, every day means managing a chronic illness that has had an impact on their quality of life.  These people live all over the world and are all ages, religions, cultures, and nationalities.  As we age the opportunity to develop a chronic illness increases.  Some illnesses are life threatening and others are more of an annoyance.

When I worked at one of the Southern California hospitals I was involved with the Adult Congenital Heart Disease program.  Babies born with a congenital heart defect 40 years ago started to survive due to advances in surgical techniques.  Prior to that those babies didn't survive.  Now we have a whole new adult patient population with congenital heart defects that were corrected as babies and they now need revisions done.  These adults have become the pioneers for adult congenital heart disease surgical and medical management.  They are fearful of dying every day and they are anxious and lonely.  There aren't that many adults with congenital heart disease yet, but their numbers are growing as surgical intervention

It's Just a Day . . .

Do you see the pain I feel

                  in my face or in my eyes?

Do you believe that this is real

                  or feel I'm living behind a lie?

 

When I cry do you hear?
                   . . . do you listen when I talk?
Do you understand my fear?

                   . . . or am I just someone to mock?

 

Does anyone out there even know

                 what each day I face could be?

I can't stay but I don't go

                  sometimes it's hell just being me.

 

So I walk away head held high

                  back held straight and strong.

It's the way that I get by

                  lasting only as the day is long.

 

So here we go

                         another day

                                              I don't know

                                                                    what's left to say . . .

My good friend, Tracy, wrote this poem.  She is a strong, accomplished and beautiful woman with a delightful sense of humor.   Tracy loves gardening, and her wonderful dane puppy, Jagger, and she is enthusiastic about life.  I treasure her friendship more than she will ever know!  Tracy has had fibromyalgia for 18 years.

Nurturing your mind, body and spirit . . .

Today I received a message from a good friend of mine.  She was so distressed that she had missed another family party and the criticisms that she can only imagine that come from family and friends when her husband arrives alone.  I am astounded at how we are able to feel each other's pain from messages that come to us in cyberspace.  Some of that pain is a recognizable personal pain that comes from our own personal experiences.  We have all been in that same place.  Either that or we attend family and friend get togethers regardless of how we feel; in essence we put ourselves last.

In a previous blog post, Don't Ever Let Them See You Sweat, I talked about our invisible illness and how that actually helped me to keep working.  My writing was focused on that warrior side of us that won't give in to this illness.  But that is only part of our collective story.  It is critical that we listen to our bodies every day and that we place ourselves first so we can be as healthy as possible.  I want to reiterate that we absolutely cannot wait until others understand the gravity of our illness and the daily struggle for wellness.  For our own quality of life, our survival, and our ability to thrive, we must be

Don't ever let them see you sweat!

The beauty of having an invisible illness is you can fool all the people all of the time instead of just some of the time.  Of course there are those little cues that may give you away, but most people aren't that observant.  I was able to fool people for 15 years and during that time I was able to put money away for retirement and get the Masters degree I always wanted.  I wasn't able to work full time and go to classes too so I found a great online university that gave me the flexibility I needed to take care of myself and continue to work.  Those were really hard years, but it was worth it.  Because of those years I know exactly what I'm made of.  I ultimately had to retire early, but life is still good for me.  I roll with the punches and I never let anyone see me sweat.  My strong will and determination have served me well and gotten me through many life miles and I'm not ready to be put out to pasture just yet.  Sure I have limitations, but I don't make that my focus and I just work with it throughout each day.

We can't wait until everyone understands us and our fibromyalgia.  We need to keep moving forward and living our lives.  I work every day to educate others about fibromyalgia, but this is a crusade of patience and persistence.  When I was first injured 19 years ago I was in severe pain.  I decided to learn more about chronic pain so I bought a book.  I don't recall the name of that book and I don't even recall much about that book.  My take away from reading that book was inspite of your pain, don't make faces.  That was an ah-ha moment for me.  No one wanted to see me focusing on my pain