Wednesday, February 2, 2011

But you don't look sick...

I am so tired of having to try to explain myself to people.  My family, my friends, the doctors.  I am constantly trying to justify the things my husband and I do.  Money, health, raising my kids.  It seems like everyone has an opinion.  Obviously my health and money are on the top of the list.  With my health taking a large lead.

Doctors, other than Dr. Shoffner, don't believe how sick I am.  Much of my family says they understand, but they are so far from understanding.  I still hear things all the time that prove to me that they don't have a clue (many, but not all).  If my friends understand, they don't always show it.  I am so tired of having to validate my need for daily daycare for my 4 year-old daughter.  I am tired of having to validate my need for pain medications, bedrest, and help around the house. 

I have always been a very independent person.  It's not easy for me to ask for help, with anything.  However, I've had to do so over the last year.  A lot, in fact.  Some of the guilt I feel is self induced.  Some of it isn't.  There have been a few times in which we, my husband and I, have had to explain things we have done. And a couple of those times didn't go so well.  I'm tired of it.

If I could work, I would.  If I could take care of my kids by myself, I would. If we could pay bills without asking for help, we would.  If I could do laundry, cook, clean my house, take my daughter to and from soccer practice, go shopping (well, you get the point), I would! 

I don't like having to ask for help.  I hate it in fact.  If we could do everything on our own, without help from anyone, we would.  If nothing else, than just to avoid the feeling that I have to explain every move we make.

I AM sick.  I may not look sick, but I am sick. 

Below is an excerpt from 
The author says everything I'm thinking every day.  If you want to better understand how I feel, please read carefully.  If you want to read the full article, the link is above.

"I do love my life, but I hate alot of things lately.
I hate having a scribe write for me in class or having my hands hurt too much to type.
I hate popping pills, and having people ask me personal health questions that I don’t want to answer.
I hate that everyone thinks any time they talk to me is another opportunity to give unsolicited medical advice.
I hate living up to other people’s expectations of what a healthy person should be.
I hate living up to other people’s expectations of what being sick is.
I hate thinking about how or when I might die, because for me it might be a “when day” and not a “someday”.
I hate never feeling good enough, quick enough, pretty enough, or just “enough”.
I hate that I know my doctors better than I know my friends and some of my family.
I hate that no matter how hard people try, (or don’t try) They will never know the loneliness of being in a crowded room knowing you are the only one who tells time by pills, energy and spoons.
I hate people that are inconsiderate, and make plans without thinking of walking or come by unannounced when a phone call can help you so much.
I hate people who complain, “I need a nap”, “I need some caffeine, I have a headache”, “I have pms cramps”, or even better… “I have a cold… I am Ddddddyyyiing!”. These expressions need to be banned, because they do not adequately describe how you are feeling and they belittle what pain and sickness I may be feeling.
I hate having to defend that I am a good mother, wife, daughter, sister, or friend.
Most of all lately, I hate people who judge, and give me advice, or questioning stares of how I handle my diagnosis, or my life.
Basically I hate letting people see the effects of my disease. I don’t care if they know that I’m sick, I just don’t want them to have to see it, or deal with it."
-written by Christine Miserandino, ©

More of my favorite posts at

Sick Humor: The top ten worst suggestions commonly given to someone with a chronic illness

Handicap parking and my invisible illness

Confessions of an unapologetic high maintenance spoonie
(Of course, I'm not a "high maintenance spoonie" because I can't afford to be.  Otherwise I probably would be)

And of course there's the The Spoon Theory

It's a lot of reading, but if you are not a fellow "spoonie" and you want to understand what we go through or what we're thinking, it's worth it.

1 comment:

Bibliotekaren said...

Robin, I've started several responses to your post. I just wanted say that you're heard.

I've been working on deciphering when I choose to explain to others and when I don't. Although I don't deal with the challenge of your situation with a family and childcare needs. Much more complicated. But for others, I'm trying to come up with phrases that lay down an information boundary both ways (me not needing to explain and them not needing to advise).

Been also thinking about how someone else's perception is not the truth and that I can still be ok even when misunderstood. Now this all depends on how close the person is as to how loaded that is.

And, yes, how I don't need to be someone else's version of what a sick person is. It is so much harder when we don't have a clean neat label to apply to a scenario as well as lots of invisible issues.

Last time I left my cocoon (I live alone and spent a couple months with family in another state recently), I wrote about this in a post.

I'm glad you have Dr. Shoffner in the pipeline.

Hang in there.