So better late than never, right? Today is the last day of Invisible Illness Awareness Week. There are countless invisible illnesses that people suffer from. For me personally, I live with the chronic illness of Endometriosis, Infertility, AND the diagnosis of Severe Obsessive Compulsive Disorder (OCD). That's three things I live with every day that many people, just looking at me, wouldn't know I suffer from. That's why they are called "invisible" or "silent" illnesses. The person suffering often does so in silence, while those around them don't understand what they are going through. Sure, I might look healthy, but in reality, I'm not.
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Endometriosis is a chronic illness involving tissue growth in the woman's reproductive system and sometimes other areas as well. There is no cure for endometriosis. There are surgeries to try to alleviate the associated symptoms of debilitatingly painful periods, Infertility, etc, but these are only temporary cures.
So while others see me as a happy-go-lucky person, the truth is, some days I can barely walk because I'm in so much pain.
For more information please visit Jeanne at ChronicHealing.com
And please read The Spoon Theory (But You Don't Look Sick) to gain a greater understanding about how people with a chronic illness are forced to live on a limited supply of energy.
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Infertility can be caused my many different things. For me it is my endometriosis that causes it. Infertility is when a couple has tried for a year to have a baby and have not been successful. Infertility hurts on an emotional level that I never knew existed. Others don't know the emotional weight I carry around with me because of my inability to get and stay pregnant. I go through bouts of depression (also another invisible illness) because of my Infertility. While I'm learning to cope with my Infertility (it has been a long road to get to the level of coping I am at today) it still hurts to see pregnant women and newborns and know the years that have gone by where I still have nothing. An outsider has no idea what I've gone through. Has no idea how empty my heart feels. Has no idea how much of my energy is spent longing for this one thing I can't seem to have.
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OCD is a mental disorder involving anxiety and obsessive thoughts and compulsive behaviors in an attempt to relieve internal anxiety. While I've had OCD my entire life it was not diagnosed until my early 20's. I then spent a year or two (under doctor's care) finding the right medicine and dosages for me. I am now "balanced" in terms of my OCD, for the most part. But in times of high stress my OCD behaviors come back without warning. I'll start checking things again (are the windows locked? Is the oven off?). And my fear of germs takes over my mind again. I can pretty much keep it under control, but I remember back to when these little thoughts consumed my mind and my actions. I would start driving to work and have to turn around and go back home to make sure I unplugged my curling iron. Or I'd be just about asleep at night and I'd have to get up and check to make sure I turned the oven off. So while an outsider looks at me and thinks how organized and clean I am, what they don't know is that it's an internal battle for me to not go overboard.
While I'm able to look back and realize my behaviors must have seemed comical to others, in reality, OCD is an overwhelmingly consuming illness.
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I didn't write this post for people to "feel bad" for me. I just want those who are healthy to be aware of the many illnesses that so many people live with on a daily basis.
*Disclaimer: I am in no way "Fake". Yes, I am a happy-go-lucky person who enjoys life and tries to live life to the fullest. But yes, there are these illnesses in the back of my mind that plague me. I'm at a MUCH happier place in life now than I was even just 5 years ago. I just didn't want anyone to think that my upbeat posts are a facade, because they are not. What you see is what you get with me. I have good days and I have bad days....
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"Only in America-do drugstores make the sick walk all the way to the back of the store to get their prescriptions while healthy people can buy cigarettes at the front of the store."
79 comments:
From your blog, besides the infertility I would have never known. My sister suffers from depression. I can't imagine how hard it is for you. I praise you for your strength to keep moving and living.
Wow, you gave so much helpful information and you're right... They are "silent" diseases. Keep the faith. I can't imagine how hard those "bad" days are for you. Hang in there!
I have minor anxiety. And have had panic attacks. But I know how lucky I am to not suffer from serious depression or worse, as my mom has it.
Thanks for sharing, Yaya.
I know those are very real. You shouldn't have to suffer in silence. My 28 year old daughter has OCD and BDD. She has been suffering for about 15 years. She is currently doing pretty well after a terrible scare back in March. She is currently being controlled (not quite) with medication and cognitive behavorial theapy. She goes to a clinic in LA called OCDLA which is helping. Take care & God Bless
reading your post, it seems as I may have some extent OCD (which may or may not be bc of my pre-existing thyroid issues) I always feel "gross"...its like I can NEVER feel clean...always wanting to wash my hands after touching things. Public restrooms FREAK me out. I am trying a holistic approach. I have been taking St Johns Wort in hopes that it helps keep me balanced. I hear ya though...when I am stressed or hormonal it ALL comes out!
I think you've been very up front with your good and bad days. Those who have been reading you long enough have seen both sides to you. I'm glad that you do have a fun and silly side because helps balance you out against the obvious pain you experience.
Good information. It must be hard to have those - they don't get much attention because you can't see any physical signs of them.
Great post. I'm so annoyed when people make judgments by the "cover of the book". You really never know what cross someone has to carry.
((hugs))
I can relate in some ways. I have an "invisible disability" with my hearing loss though it becomes apparent when people talk to me! and of course, as you know, I have some chronic pain but haven't been diagnosed with anything as of yet. (though I was diagnosed with a blood disorder and darn it if I can remember what it is called. I should write these things down)
We should avoid thinking about illness no matter we are ill or not.
May god each one has/have sound health & peace within for always forever.
Amen !
There are alot of things that invisible illness can cover. *nods* to Lisa Anne on the depression. There's also battered person syndrome caused by verbal/emotional/psychological abusers. There are days the victim of these looks just fine, but inside he/she is a terrible wreck. Back flashes can last years and years after escape from the situation.
Great post. I've lost a fair few friends over the years due to my OCD and made life hard for myself and those around me.
I've been called a fake, and a fair few other things. I wish it were fake.
much love
xx
I love you YaYa.
Your strength and courage to put it all out there is amazing and admirable, because it takes that "silent" illness and allows other to stand beside you and encourage you. You are no longer alone in your battle which is so AWESOME when you stop and think about it.
Muah. Thank you.
thank you for this post.
i feel more informed about somethings that i had no idea existed,
and that quote is fabulous.
have an amazing week!
But it's still nice that you end your post with some humor, by adding the quote about the pharmacy.
Nice touch.
thanks for posting on this!! i think its always great to have a reminder to be aware of what people may be battling with even if they don't show any signs on the outside!! i love you lady!
that you yaya.
i guess i should have blogged about PCOS and inferitilty (resoled with ivf)
i would have never guessed about ocd.My husband is a psychiatrist and i had helped him few years back in writing a major ocd grant.It used to be our favorite topic of discussion for longest time till the grant was active.
shraddha
I never thought you were being fake, you are just trying to live life like you would if you did not have all these problems. Wow could that sentence be any longer?
I had endo and so did my mom. It did not interfere with my ability to have children, but it did w/ my mom. I know what you mean about the pain! UG!!!
Even though we are really spaced far apart in our age differences mom had 4 children. The last child she had at age 35.
Get this He was a surprise!! I am 15 yrs. older than he is. I still hold out hope for you.
I feel you on the endo!!
I think everyone has some touch of OCD!! Others are just more severe.
I feel your pain. I suffered through 6 years of infertility.. numerous IVF treatments. The loss of a very much wanted pregnancy.
Hang in there. My baby is about to turn 16.
One way or another God will find a way to make your dreams of motherhood a reality.
Then, the fun begins!!!
People just never know what's really going on with other people. Everyone thinks I am just a crazy, fly-by-the-seat-of-my-pants, outgoing, tough-as-nails-taking-care-or-a-terminally-ill-husband, funny lady, but truth is I cry myself to sleep most nights! It's overwhelming trying to push the fears and panic down while painting a smile on my face for the world to see!
I think you're doing great....I think we both are~
♥,Lilly
Thanks for sharing....I have tendencies towards depression (although I've been fine for the past few years). And I have anxiety, but have found that daily exercise really helps!!
"Invisible illnesses" is a great name for it. Thanks for sharing your story. And thanks for visiting my blog earlier this week:-)
Great quota!
Thanks for sharing all of this info. with me. It is hard to open up and share things. I hope you had a wonderful weekend.
You're a strong, brave woman, Yaya! Thanks for raising our awareness today.
(((((hugs))))
very informative post..thanks..
xo
I suffer from endo too. I also suffer from anxiety/panic disorder and diabetes. All of which are invisible illnesses ..except the panic can certainly be seen at times..when the hives show up and I start freaking out. um ok so maybe not that one as ivisible. but I was trying to relate. hugs <3
Thanks for such a brave post!
(I love how open and honest you are!)
Thanks for writing this. It's important for people to realize that there are layers to everyone.
My mom suffered terribly from endometreosis and the she was so very very sick monthly from it. She luckily had us 2 kids, so she didn't suffer from that, but when she got a complete hystercotomy at age 29 they told her her insides were just covered with that awful stuff and they had never seen a case so bad.
I laugh off OCD tendicys too, and have always diagnosed it cycled thoughts as "anxiety"...but now I'm worried that honestly maybe that is what it is. I have been so sick before it isn't funny. Where you can't control your thoughts (although goodness knows you wish you could) and you harp on one issue over and over. Hmmm. Maybe we should email. My meds are working pretty good right now, but I had a big backstep this summer that shook me up.
Thanks for putting the word out, and letting everyone know.
Knowledge is power.
Awesome post Yaya. I have never been diagnosed (most likely b/c I don't really care for doctors) but I too have some major OCD tendencies. (Like getting up when I'm almost asleep or turning the car around to check something)...It's good to know that I'm not the only o/c person out there! I didn't know much about endometriosis before...so thank you! Yaya your blog is awesome...you keep it real...and you're so eclectic...information and real thoughts and trials and triumphs and....thanks for being you!
I don't think they get more REAL than you Yaya. That's why I love reading your blog.
It's so true that people deal with so many things that you don't know just by looking at them. That's why I'm trying to be more patient and less judgmental. You just never know what someone is going through and how difficult it may be.
I am so glad that you have things under better control.
I am thankful for your blog YaYa.. My oldest son has severe ocd. We struggle everyday with him. We try and accpet as much as we can. I can say from a parents point of view it is the hardest thing to have to watch your child and his rituals. I am thankful to meds they seem to help some.
I had severe endo it cost me my parts and caused many complications with my pregnancies. Thank you for sharing this.
BIG HUGS TO YOU
Thanks for bringing awareness to three disorders that deserve more attention. As silent as they are and as much as people might not recognize them when just looking at you, they can all be debilitating. Congratulations to you for being brave enough to share all three with us here.
Thank you for this post.
You are human!
and You are wonderful!
I understand your disclaimer, I hope no one ever thought you were fake
To have even just one of the 'invisible illnesses' you mention is debilitating enough but to suffer from more than one of them...is frightening.
Depression to those that have not gone through the bleakness and been in the near-bottomless unlit hole without a ladder or flashlight isn't something to be wished upon anyone.
OCD is in its severe forms robs life of calmness and can abruptly end a relaxing moment in a panic attack.
I suffer those two - and you add another crushing one to your burdens. It makes my heart ache to see you suffer - and makes me smile and laugh when you aren't. You are an inspiration - you bring joy to many - I have wished many a time for you to realize your dream - to be the mommy you fervently wish to be. I will go into dreamland tonight hoping for many things - among them better times for you, for LadyStyx, and for many others that, as LadyStyx put it, in boats side by side, rowing the same direction, to reach the far shores where the beach sand shows many little foot prints with a couple larger ones in the pattern of a happy dance.
and you handle all of these illnesses with grace and enthusiasm for life...something that you should be very proud of.
I am glad you brought up OCD, as I have that too. And any of the other mental disorders, people can't see those either.
Alicia,
Let me start by saying... I just love you!
First off... I know you're not feeling well and I know how much energy it takes to blog about important/serious topics such as medical conditions. So I hope you have gotten some rest and I'm amazed you managed to squeak in a post for II week when you're feeling so lousy.
As far as endometriosis is concerned, I am eternally grateful (as ever) that you are spreading the word about this serious illness which can profoundly affect patients and their families. As you also pointed out, there is no cure for endometriosis. (Thanks for the linkback).
As far as infertility, as you again pointed out... it can be caused by many things. As you know from personal experience, endometriosis can cause infertility and all the heartbreak that goes with it. Your advocacy work on infertility is helping many people!
As far as OCD is concerned, I applaud you for explaining this illness openly. Too often, in a society that stigmatizes mental illness, people are afraid to talk about such conditions. I commend you for educating people about how OCD has touched your life!!
Finally, I love that you clarified the difference between having a positive attitude/living life to the fullest... vs. pretending/faking/putting on a facade. There is a big difference.
I know because I try very hard to do the same thing you do... (live life to the fullest but not be fake)... to put it bluntly.
Excellent post!
Jeanne
P.S. THAT QUOTE IS AWESOME! WHERE DO YOU FIND THIS STUFF? SERIOUSLY! IN MY PHARMACY, I HAVE TO WALK WAYYYY TO THE BACK AND, SURE ENOUGH, THEY SELL CIGARETTES RIGHT AT THE CHECKOUT BY THE FRONT DOOR. WHAT IS UP WITH THAT? THANKFULLY, MY NEW PHARMACY HAS A DRIVE-THRU FOR THE DAYS WHEN I AM LITERALLY TOO SICK TO WALK IN TO PICK UP MY PRESCRIPTIONS (NO EXAGGERATION... SOME DAYS ARE LIKE THAT)...
Feel better!
So...another SITS early morning, snuggled up near each other on the Roll Call. We've got to stop meeting like this!
i get it... Pre-Hyst... I had endometriosis, adenomyosis, congestive pelvic disorder, and ovarian cysts. meds triggered depression. butI CHOOSE to be happy, like you. I try to live my best life. but sometimes, the disease(s) win(s).
btw, my friend has a sign that reads, "I have CDO...It's like OCD, but in alphabetical order like it should be." lol!
((((YaYa))))
So very sorry that you suffer so.
{{{{{{{{Alicia}}}}}}}} I too suffer from mental disabilities and let me tell you, they are debilitating! I have a couple of phobias that basically run my life and send me into frequent tailspins. So, I feel for you, my friend.
Justine :o )
I have to say I agree. There are so many silent diseases. I have depresion, hubby has PTSD, but it is all in how we handle our trials. And May I say you do so with such grace and humor!
Your openness with all of us is going to help change someone's life for the better because they're going to see that you have courage to speak up about what ails you...and they will, too! Sending big hugs to you today for all that you are and what you stand for!
I am sorry that you have to deal with these things on a daily basis and I think your attitude that you share on your blog is amazing. You seem to be an open book and I imagine that is therapeutic for you and it seems you get a lot of support from others. I don't see you as fake at all, just someone who makes the best of things and I commend you for it!
Great idea for a post. So many "invisible Illnesses." My mom has lupus. Another unknown, "invisible" illness.
thanks for htis reminder that jus tbecause someone looks okay all may not be well with them. Whenever someone is rude or cranky, I try to remember that we may have no idea what is going on with them, and they may just need a silent pray or a smile. They do not need to be judged that is for sure. We all have our sturggles some more serious then others and some cannot be seen. The worst 'illness' to have is no heart toward others.
Take care dear, prayers are with you always;
I am sure you have heard a ton of peoples advice with OCD, but one thing that has been very helpful with me is to say something outloud. Like when you unplug your curling iron say it out loud! Sometimes my family will laugh, but it really has helped me with those little things can drive you crazy:) Lisa
As always, I appreciate that you share so freely so that others may find comfort or raised awareness. Thanks, Yaya!
Thanks for sharing your life and this valuable information. You never come across as fake in any way.
Great post :)((hugs))
I had no idea it was invisible illness awareness week! I didn't even know there was such a week, or such and thing! I think it is awesome that you posted about this because there are thousands of silent sufferers such as yourself out there in bloggy land.
Hang in there Yaya!
Thank you for sharing this week with us Yaya. I really like the information you've shared and the links you've provided.
You are in no way fake...You are one of the most "real" people I know even though I technically don't know you IRL...hope that makes sense!
You have been dealt more than your fair share of burdens...which sucks...
BTW, when I lock up at work - I check the door not 5 but sometimes 6 or 7 times. Always looking over my shoulder so no one thinks I am crazy :D
This is what I love so much about you! You are real!! You ARE YAYA!!
We can always count on knowing how you feel, and where you stand!
AWESOME GIRLFRIEND!!
My friend suffers from endo. I know how amazingly painful it can be. You are a pillar of strength lady!
And I thank you for keeping it real. Some days are good and some days suck, that's just part of what makes us human. I appreciate all this info you've shared. I didn't know much about endometriosis before!
I remind myself of this when I see that "healthy" person park in a handicapped spot. We never know what is going on past the superficial.
Brillant post and the older I get and the longer I've been a RN, the more I realize we all have invisible illness and scars. There is a great book by Blair Justice of MD Anderson Cancer Center called A Different Kind of Health, your post brings up alot of the same issues. Thanks, my best to you and Josh.
And that is why I love you Yaya...because you are REAL!
faker faker!! just kidding :) Thank you for shining a light on these silent illnesses. often times the illnesses that are unseen are the hardest to deal with. (in my experience) because people don't "see" anything wrong with you.
anywho, thanks for swingin' by. sorry i haven't been here in awhile. life is nuts!!
I never thought of you as a fake person!!
You are dealing with alot! ((Hugs))
Wow, as you can see from your comments you are not alone.
Thanks for sharing Sweet Yaya.
Your last quote about drugstores is true! Ha. I never thought about it that way.
I have severe anxiety and OCD. My obsessive tendencies at time actually heighten my anxiety, instead of relieving it.
Your quote at the bottom was GOLD!! Wow.
And I keep hoping for you all the time. :)
Thank you for sharing this post, YaYa! I have Cushings Syndrome (which is "invisible" too..it's an adrenal disease)...Chilly has OCD ... Thank you for bringing this to light! (I actually have some OCD as well...I do the lights, oven and curling iron thing all the time!)
I just looked around your blog (thanks for visiting mine!). Great blog you have!
Praying for you and for your adoption - they are two cute children!
http://pjsprayerline.blogspot.com/2009/09/one-lovely-blog-award.html you won a award
Tho I am always aware of your hope to be a mother, I do tend to forget about your illness.
But to see you dance on Youtube, makes me think you are just the happy-go-lucky gal you are.
What a wonderful spirit you possess.
I was diagnosed with endometrioma in May of 2004 and had to have my left ovary removed because of it.
I was fortunate that I was able to concieve my now 4 year old that fall.
I wish you well. I wish good things for you.
wow that's a lot. :(
What a great post!! I have panic disorder and IBS, neither one are exactly party topics. I've never heard of the term invisible illness but I really like it. It reminds me that there are probably a lot of people out there with issues like mine (and yours) I just can't "see" it.
You are inspiring!!
Still think you're great, invisible illnesses and all :-)
I had postpartum depression/anxiety and I remember feeling ashamed about it. Sometimes I think if we knew about others' invisible illnesses, perhaps we would all be a little kinder.
Thank you for sharing. I'm sure that wasn't easy.
You touched my heart and made me feel more hopeful about my own silent illnesses and also made me realize that there is so much people deal with that from the outside you could never tell.
No disclaimer needed; it's clear that you are genuine, and I love that about you.
I didn't realize you have OCD. That's really tough; I'm glad you've found meds that help.
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