Not having a diagnosis is hard

It's not that I want to be sick.  I just want a name.  Not a barrel full of symptoms that have yet to be combined into a singular illness.

I've read that it takes several years for many chronically ill people to be diagnosed.  This is very frustrating.  Seeing specialist after specialist.  Being dismissed and accused.  

You try to join support groups for illnesses that have symptoms that you experience, but you feel left out.

You read about all the treatments people with a diagnosis are getting and fear that your body is being damaged while you wait for something to show up in a test.

Who marches for the undiagnosed?  Where are our shirts?  When do we get a voice?  What will it take?

Pretending to be well

I think most people probably pretend to be sick...ya know...to get out of work, school, dates, whatever. But have you ever pretended to be well? Or pretended to not be as sick as you really are? What about hiding symptoms from the doctor because you can tell that your chart is getting thicker and thicker, and one person couldn't possibly have that many things wrong with them.

I had never thought about this until I was talking to a lady at work who is chronically ill, and she asked if I had ever not told a doctor everything because I didn't want to come off as being a hypochondriac. And my answer was, "all the time."

Now, here was someone with a diagnosis and who was being treated but even she felt the same things I did...you don't want to be labelled as the crazy person that has everything wrong.

Why don't some people feel comfortable saying what's wrong? Is it because we have been dismissed so many times by medical professionals, family, friends, and coworkers? Or maybe we don't want people to believe we're attention-seeking (which isn't necessarily a bad thing, especially when dealing with doctors...they are supposed to give us their attention...that's the reason we go to them)?

I know, for me, it's really hard for me to admit that I'm not having a good day. It's not because of pride, it's because I don't want people to treat me differently. I don't want to hear how I'm too young to be sick, tired, in pain, etc. I don't want any home remedies, no suggestions that I'm eating too fast or need to take a zantac. I don't want you to tell me that it's probably nothing because that's honestly not very reassuring.

But when you ask me how I'm doing today, expect a "good" because I would rather you think I'm being rude and flakey than being a fake.

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No, I'm not a Hypochondriac nor am I over-exaggerating...

...but thanks for thinking that.

I know that there's no visible signs (most of the time) that I'm in pain or feeling really sick, but trust me when I say this...I HURT ALL THE TIME.  I FEEL LIKE I HAVE THE FLU OR JUST RAN A MARATHON EVERYDAY.  I wish that all of this was in my head.  I really do.  I wish I was making this up because I would give anything not to feel this way.

I have to neglect basic tasks sometimes just to make it.  No, I can't clean up my apartment.  I barely have the energy to clean my body.  No, I didn't cook.  I can't barely manage to stand that long.   If you think that I can work 8+ hours at a job and then come home and do normal household chores, you are mistaken.

I go from bed to work to bed.  That's my routine.  I manage to sing and dance and be merry while I'm not in bed...but I always pay for it at the end of the day.

My life is miserable enough with my body hating me so much.  I don't need the sideways glances and gossiping about me being sick.  I really don't.

It's amazing how little people know about illnesses.  You would think a systemic illness was as common as a unicorn.   The same thing that makes my stomach hurt just might be the same thing that makes my joints hurt.  Mind blowing?  Well, it shouldn't be.    You feel bad all over when you come down with the flu, right?  So it should be that hard to believe that my pains, rashes, and fatigue are all coming from the same place.   I don't like collecting symptoms anymore than you like hearing about them.

I don't like telling you about them, but sometimes I get really sad and frustrated, and I have to tell somebody.  I don't want your sympathy.  I just need to get it out.   And believe me when I tell you that I'm only telling you a small bit of what I'm going through.

I have to live my days knowing that there is something wrong with me, and it might be a  long time until they find out exactly what it is.  I know that there are millions of people just like me in this world that are suffering without ever getting a diagnosis.  Some of them die with no answers.   Dying doesn't really scare me much anymore.  But I'm scared shitless of having to live like this for the rest of my life.  

30 Thing about My Invisible Illness You May not Know

1. The illness I live with is:   still grossly undiagnosed, but i have a list...dysthymia, borderline personality disorder, ocd, non-specific esophageal motility disorder, gastric antral vascular ecstasia
2. I was diagnosed with it in the year:   psychological, 2001-04.  physical, 2009-10
3. But I had symptoms since:   as long as i can remember
4. The biggest adjustment I’ve had to make is:   realizing it's not all in my head and that i cannot do everything...sometimes you have to take a break
5.  Most people assume:   im a hypochondriac or just looking for attention...or that im exaggerating
6. The hardest part about mornings are:    getting out of bed...im usually tired and stiff
7. My favorite medical TV show is:  probably ER or Scrubs
8. A gadget I couldn’t live without is:  my cell...
9. The hardest part about nights are:  knowing that i'll have to do it all over again the next day
10. Each day I take __ pills & vitamins. (No comments, please)  varies, but i take around 15 total now
11. Regarding alternative treatments I:  have only looked into supplements...thinking about acupuncture though 
12. If I had to choose between an invisible illness or visible I would choose:  i'd choose the one that hurts less i guess...i dont know...
13. Regarding working and career:  i've been missing work and i never do that...it's hard to be bubbly and happy when you hurt
14. People would be surprised to know:  that i cry sometimes
15. The hardest thing to accept about my new reality has been:  life is very fragile and it's may not play out how you always imagined it would
16. Something I never thought I could do with my illness that I did was:  n/a...doctors are just now beginning to agree that somethings wrong...soooooooooo
17. The commercials about my illness:  they have ones for depression...they are depressing lol
18. Something I really miss doing since I was diagnosed is:  i havent really changed much since i dont have a definite dx right now
19. It was really hard to have to give up:  n/a
20. A new hobby I have taken up since my diagnosis is:  blogging more since im in bed more often 
21. If I could have one day of feeling normal again I would:  go running
22. My illness has taught me:  that people get really uncomfortable around sick people
23. Want to know a secret? One thing people say that gets under my skin is:  "oh, that's why you're so skinny!!"
24. But I love it when people:  actually take the time to understand what im going through and ask questions or google
25. My favorite motto, scripture, quote that gets me through tough times is:  Things will get better.  If they don't, oh well.    :-)
26. When someone is diagnosed I’d like to tell them:  welcome to the club
27. Something that has surprised me about living with an illness is:  people in the medical field can be real jerks
28. The nicest thing someone did for me when I wasn’t feeling well was:  ask me if i needed help
29. I’m involved with Invisible Illness Week because:  we are overlooked...especially if we are young.  nobody believes us.  nobody cares.  they think it can't be THAT bad since we don't look sick, but we suffer.  and im sure that many are like me, and they just stop saying how bad they feel.  we stop going to doctors when they dont believe us.  we stop believing ourselves.  that's no way to live.  we need a voice.
30. The fact that you read this list makes me feel:  happy because somebody actually came to my blog.  lmao

National Invisible Chronic Illness Week

September 13-19, 2010 is National Invisible Chronic Illness Awareness Week. This annual event, started in 2002 by Lisa Copen, features a variety of ways to get involved including a virtual conference September 13-17 online for free with speakers each morning 10:30 – 12 USA Pacific time.

There is a Meme “30 Things You May Not Know About My Invisible Illness”, you can sign up to blog for the cause, read guest bloggers’ posts, and get involved in the campaign on Facebook. There is even a free 80-page ebook when you sign up for email updates, with 263 tips!

With nearly 1 in 2 people living with a chronic condition, about 96% of those people are suffering silently with invisible illnesses. See InvisibleIllnessWeek.com