What NOT To Say To A Woman With Endometriosis.

In dealing with all the emotional and physical pain that comes with endometriosis, there are a lot of situations where kind-hearted people want to offer support, but don't know what they should say. And often, in an effort to be loving and comforting, they end up being accidentally insulting.

So I am sharing a few less-than-helpful comments that I've heard from nurses, doctors, friends, family, and coworkers multiple times.

Not to embarrass anyone who has said these things to me, but to hopefully explain why these things aren't appropriate to say to women with endometriosis and provide some positive alternatives for moments when well-intentioned people are looking to provide comfort.
If you know a woman who is suffering with endometriosis, please don't say....

"Have you tried Ibuprofen?"

          This is a really common one. I even got asked this a few times in the Emergency Room, while I was crying in pain. Women with endometriosis have often been dealing with severe, chronic pain for at least 5-10 years. Just go ahead and assume that at some point, they've tried Ibuprofen, Midol, and anything else they could get their hands on in the medicine aisle of their local grocery store. And for the majority of the time, those pills do not even touch the pain which is why they turn to heavier medications.


"I mean, you look like you feel well so it can't be that bad."

          This one's always a little rollercoaster for me. Starts as a compliment, ends as an insult. "Thanks! Oh, waiiiit... that's not a compliment, you think I'm a liar." Endometriosis is labeled as an "invisible illness". Everyone's body handles it differently. Some women have severe bloating in the abdomen and you may be able to tell when someone looks tired, but just because someone has learned to function in their life and brush their hair through their flare ups, doesn't mean their pain doesn't exist on an extreme level.

"You just want people to feel sorry for you."

          Most girls with endometriosis who decide to share their experiences, do so for several reasons :

                    1) they want to raise awareness for a disease that many people have never heard of.
                    2) they want to explain themselves to the friends they constantly flake on or the boss they're calling in sick to
                    3) they want to connect and relate with other girls with endometriosis
       
         Attention and sympathy don't come up on that list. I guess maybe for some girls, but not for most.

"If there isn't a cure, you're going to need to just toughen up and get over it."

          First of all, don't ever let someone take away your hope like that. There isn't a cure but there are many treatments that women have found relief from. It's a long process, but eventually improvement can be found if the right treatment is introduced to the right person. Second of all, women with endometriosis are tough so much of the time. This goes back to endometriosis being an 'invisible illness'. People assume it's something small enough that you can get over it, but it's not. It's emotionally, physically, and mentally draining on every level. Keep your hope but don't ever feel like you should be able to 'get over it'.

"It could be worse, at least you don't have cancer."

          I never know what to say to this, so I will just share one quick quote from a doctor I recently started seeing. He is a naturopathic doctor, married to a woman who was having surgeries for her endometriosis every 2 years, like many women do, with no relief from pain. He went into natural medicine to try and find a way to help her because he saw the struggle firsthand and couldn't believe the lack of understanding that the surgical professionals had about endometriosis cases. His words at my appointment validated me more than anything ever has :

            "People who haven't seen it firsthand refuse to see endometriosis as something serious and detrimental because it isn't life threatening. No, it isn't going to take your life. It's just going to stop it completely. You'll be alive, but incapable of living. You'll work twice as hard for half the success in life. It's not living at all."

          Every day, I am very thankful that my condition is not worse, but please do not belittle the struggle I'm going through by saying something like "at least it's not [insert other disease]."

"I knew a girl who had that and she was fine."

          Endometriosis targets every woman differently. The same diet doesn't work for everyone. The same treatments don't work for everyone. The same surgeries don't work for everyone. Everyone is different. I'm glad your friend was fine. She's very fortunate.

"You're so lucky, I'd love to take that many days off of work."

          I live in constant fear that I am going to lose my job because of how many days I am unable to get out of bed and get to work. And those days that I miss are miserable because I'm sitting at home, taking medicine that I need a paycheck to afford, but not able to work for that paycheck. It's not a vacation. It's an anxiety ridden, terrible, painful situation. I would give anything to never call in sick again. Nothing about that is lucky.

"You just need a more positive attitude."

          A positive attitude isn't going to detach endometrial adhesions from the sides of organs. A positive attitude isn't going to give an woman with endometriosis a sure chance at children. A positive attitude can be helpful for a person mentally, but after years of surgeries, procedures, medications, doctors appointments, and emergency room visits, sometimes it's really hard to keep that positive attitude. And that's okay. You're allowed to be sad and discouraged sometimes.

And my absolute least favorite....

"Yeah, I have cramps today too."

::insert screetching brakes sound here::

          Endometriosis is not cramps. It's not even "bad cramps". It's chronic pain caused by internal bleeding and inflammation. There are two types of endometriosis pain : tolerable and intolerable. It can't be solved with over the counter medication or a heating pad. It's not the same thing as cramps. When they have an endometriosis flare up, most women are unable to move at all. Comparing that to cramps is incredibly degrading.

-        -         -         -         -

Again, I understand the people who said these things had good intentions and were just trying to provide help in some way, but these words cut more than they heal. 

So what should you say?

The next time you see a woman going through the pain of endometriosis, instead of telling her it could be worse or that she needs a better attitude, you can tell her you think she's a strong person, because she is.

Or instead of telling her that she looks good so she must feel well, you can tell her that you admire her ability to handle pain as gracefully as she is.

Instead of telling her she is lucky to be sick and you wish you could call-out too, you can tell her that you're sorry she had to miss work. You know that must suck. Or you can ask if there's anything she needs.

And there probably won't be anything! There's not a whole lot that anybody can do, she just has to wait it out. Better days will come. But your consideration and willingness to help will mean the world and will provide much more comfort than any other recommendation or "advice" you could give her.

For the endo girls : Did I leave out any that you've heard often? What would you rather have someone tell you instead?

To the rest of you, as always, thank you for reading and allowing yourself to be more informed.

 PS: Endometriosis is a condition that occurs when the lining of a woman's uterus grows in places outside of the womb causing chronic pain, internal bleeding, and often infertility. 

The average time it takes for a woman to receive an accurate endo diagnosis is 10 years. 
I share about this on my blog in hopes of raising awareness, decreasing that average diagnosis time, and providing a small resource for my "endo-sisters" out there.

Happily ever after romance stories are dangerous for young girls!

 ‘Once upon a time, there was a king and a queen. They fell in love and lived happily ever after.’ How dreary are the happily ever after stories. As a child, I was fascinated when the young princess escaped the clutches of her evil god mother and lived a forever happy life with her prince charming who always had the perfect gelled hair and a baritone to die for. But as life started to take away my innocence and maturity started to bring out the worse in me, I started deriving sadistic pleasure from the tales of tragic love where the heart loved but destiny conspired against it. William Shakespeare knew that Romeo must die. He knew that the traditional concept of true love and happiness merging into forever together would have been yet another Barbie Disney tale. What is love without tragedy and what is love without jealousy.

Imagine a happy ending saga of Othello where instead of murdering the love of his life Desdemona under a fit of rage, the tale ended with them making castles by the beach and forever making babies. Picture Cleopatra and Mark Antony counting stars under the night sky or running towards each other in slow motion through a meadow of daisies instead of cruel act of committing suicide due to false news about the lover’s untimely death. What if Salim and Anarkali had a traditional nikah and lived forever together brushing their kathak  skills under the mirrored walls of the palace instead of the tragic episode of the beautiful Anarkali being entombed alive in a brick wall right in front of her beloved Salim’s eye. Tragedy is what made these tales immortal.

Maybe I am a jealous soul. Maybe I don’t like lovers ending up happy, atleast not in tales or movies. I want to see them love and then lose it. I want the universe working against their togetherness for their loss balms the bruises of all the time I was forced to let someone go. It makes me realize how my own nature can work against my own happiness. Sugar coated happy endings disgust me because my reality is far from it. While the heart smiles to the pleasant ending love stories, the soul connects to the tragic ones. The world is too messed up to let go of tragedy.

I am happy that Jack died in Titanic. I am happy Rose lived forever alone for the rest of her life reminiscing. I am glad the ship hit the iceberg for it depicts how sometimes you are destined to sail on the ship of disaster that rams into an iceberg. I want to feel the disappointment, rage and the frustration of the characters, because it makes me feel better about my own situation. Happy Love stories make me lament for my life isn’t effortless or blessed with love that breaks the shackles of the deformed mindset of the society I am part of. Like they say, Misery loves company. 

The reality is that we all have been victims of destiny not working in our favour at some point or the other. I happily embrace the tragic aspect of life because by not doing so I would be lying to myself and moreover I would lose the ability to understand that the meaning of human life goes beyond mere happiness. Forever gloating on the happily ever after tales and never accepting the tragic reality, makes life and us, a lot smaller. A happy ending is nothing but a serious misinterpretation. 

PS: I dint meant to be rude but if you could accept the truth you might as well understand..

The Right Age..

The concept of ‘The Right Age’ is a universal one. People might differ when it comes to race, caste, sex, religion but there is a thought that binds them together and that is this concept of ‘The Right Age’.

  

Even before the sperm got its head inside the egg and screamed ‘Ooh Baby!’ the life which might be born after 9 months was forever marked with this concept of ‘The Right Age’. And once it falls out of its mother’s ‘You-Know-What’ into the dirty hands of this ugly world, the clock starts ticking. The wheel of the Right age starts moving.

The right age to start walking, the right age to start talking, the right age to chuck that breast milk and eat some rice, the right age to go to kindergarten, the right age to hit the school and even the right age to have your first period (if you are a girl). No, it does not stop there because right after all that you have the right age to join college, the right age to hangout with friends, the right age to have a job, the right age to marry, the right age to get laid, the right age to have a baby and then the right age to decide all the right ages for your child. It is like the bus in the movie ‘Speed’ which has to keep running in order to prevent itself from blowing up into a molten junk. It will only end with our death.

Now what if I decide to mess up with all of that? What if I decide to start walking a year later than expected or what if I play with the right age to have a boyfriend or what if I want to postpone the right age of marriage? What if I want no right age to have kids and what if I want no right age to do what I really want to do? What if I want my own set of ‘Right Ages’ made on the spot and untouched by what the society expects from me?

 I hear people say ‘This girl is 24. This is the right age to get married’. I want to genuinely ask these enlightened souls “I never knew that in the Last Sermon delivered by the  prophet Muhammad on the 9th of Dhu al-Hijjah, he commanded ‘Thou Shall Enter Wedlock at Holy 24’. Please tell me more about it, will you? ”.

Society is like USA, while your little pitiful life is like a forlorn country trying to fight its own battles, have a sincere government and make the ends meet. Society bombs you down and beats your dreams, all the while thinking that only good is resulting out of this. Society is a confused leech, sticking to you and feeding on you, yet thinking that it is actually helping you. It is our fault actually.

So the next time someone tells you what the right age is for you, tell them that it is their right age to mind their own business. Next time you are told that now is the right time for some wedding show time, ask them whether they are the last descendants of the Mayans who were too concerned even about the right age to celebrate an Apocalypse. And if ever someone tells you that you should have some kids before those eggs stop hatching, tell them that you are as fertile as Halle Berry who is popping out a kid at the age of 47.

Because the right age is a personal aspect and unless you are a puppet, you will make your own choice.

How much can you relate?

Feminists have been portrayed as bra-burning, man-hating, laadheenee, masculine looking women, blabber too much without any manners with their mouths wide open in this country. While at moments I do feel like blabbering a lot and hating men, that's just me and is not what feminism is really all about. Feminism is about defining, establishing, and defending equal political, economic, and social rights and equal opportunities for women and men. So I am sure you are all reading this and nodding your heads in agreement and probably have just confirmed that you too are a feminist! You are probably wondering where I am taking this, no controversy here, we all seem to be on the same page, right? Wrong.

For some strange reason, I am always asked about feminism under the assumption that its incompatible with who I am. When women or men ask me if I identify as a feminist and I agree their eyes light up and they look at me as some sort of freed woman, that I have overcome oppression, I am a brave soul and I have defied my people and have joined the other side, the right side - the one that doesn't oppress women. The assumption is that feminism is incompatible with Islam. How can one be a feminist and a Muslim? It just doesn't make sense?!

It actually is a fact and makes perfect sense that Islam is a religion of feminists for feminists. 

Let's go back to the days of my beloved Prophet Muhammad (ASA). His wife, Aisha has inspired Muslim women for centuries. She was a scholar, a poet, a jurist, a politician and a military commander who led entire armies. She was the one woman that the Prophet was closest to, the one he chose to spend his final hours with.  It was under Aisha's house in Medina that he was buried. But it didn't not end with Aisha. There have been countless Muslim women who have changed the course of history. They include Khadija, the Prophet's first wife, who was 15 years older than him (yes, what we would now call a cougar), a wealthy businesswoman who employed young Muhammad as her caravan leader, and ultimately proposed marriage to him (yes this was like centuries ago and she asked him). Khadija was the first convert to Islam and its strongest supporter. She convinced an initially self-doubting Prophet Muhammad (ASA) that his vision of Angel Gabriel was a real spiritual experience, and provided him the emotional and economic support to launch a spiritual movement that would create a global civilization.

Many great Muslim women followed the wives of the prophet and the stories are endless. I am always more than happy to tell the stories that inspire me to be a woman. Like the story of  the Sufi mystic  Rabia Al-Basri who challenged the corruption of the Caliphs of Baghdad in the 8th century or the story of the  Turkish slave girl Shajarat Al-Durr who became Sultana of Egypt and launched the Mamlouk dynasty that halted the Mongol invasion of the West in the 13th century. The iron queen Nur Jahan, Empress of Mughal India, who rivaled Queen Elizabeth I as the most powerful woman on earth.

Not only are there countless feminists in Islamic history, Islam as a religion is built on many feminist principles around equality and economic empowerment of women. In Islam, when a marriage is performed, there is a dowry and an alimony amount that is negotiated. Some may say that's not empowering at all and a feminist would and should be shh (shaking her head). Some say it's as if fathers are selling their daughters. I say it's a security deposit for women. How many stories of women who are divorced, left with children that you heard of over the years that had to start their lives over with nothing. I am sure all women would prefer to start their marriages with some economic security. Of course this practice is relative to the different cultural backgrounds - some dowries are more exaggerated than others but the foundational principle is that there must be a dowry for the wife. There is also a amount (alimony lump sum - that's all I could think of to explain it in the simplest terms) that is paid to the woman upon a divorce, if that were to happen. Also in Islam, a woman who works outside of the home does not have to provide assistance with household expenses unless she wants to. Actually this sounds to me like its more oppressive for the men than for the women. If a women inherits money or land from her late parents she does not have to share any of her profits with her husband. Now many of you are thinking, ok that sounds all great and dandy but why don't I start talking about the other things that are oppressive. Separating men and women in prayer areas at mosques is oppressive and disempowering? Now we are talking. Actually this act of separating women and men in prayer areas is quite empowering and its intention is to protect women. When we pray, we must perform different prostrations that require us to bend over. As women, we all know how it feels to be walking on the streets of Male' and getting street harrassed by men who stop everything they are doing to cat call and whistle at women walking by and might I add walking upright. Imagine being in a mosque, in a house of worship, where you're entire focus is on God and prayer and long and behold there is a group of women lined up in front of the men bending over? Need I say more. The explanation is that simple.

You can debate me on wearing hijabs and burqas, household works, honor killings, etc. Let's  keep in mind the distinction between cultural traditions and religion which is always lost in translation or not depending on who the hatemonger is that is spitting it.

By now you should have gotten my point.. 

The devil inside me

Deep in the darkness of the Night.

You take over my life and hold me tight.

The clock ticks like the beating of a drum.

Id give anything to be laying comfortably numb.

The birds tweet and sing there beautiful song.

I'm still lying awake trying to be strong.

Upwards and onwards I face the day like a clown.

In reality I just want to break down.

I hide behind humor a smile and a mask.

Hiding this from everyone is no easy task.

Everyday life can be so very hard.

For deep inside I'm physically scarred.

The carefree happy days set me flying free.

The frustration mounts when i'm knocked back to reality.

No reason no rhyme.

What will be will be.

I'm just a slave to the devil inside me.

I look just like you through everyone's eyes.

For this devil inside me wears a cunning disguise.

I could be the one walking past you in the street.

Dog-tired and weary but proud of this feat.

Painkillers and sleep are my Best Friend.

Silently wishing my body would mend.

Days spent fruitlessly watching the world go by.

Curled up helplessly wanting to cry.

Resting at Home is my only safe place.

My old life is vanishing without a trace.

Reminders of easier times taunt my soul.

Fighting fatigue and pain is now my daily goal.

The carefree happy days set me flying free.

The frustration mounts when i'm knocked back to reality.

No reason no rhyme.

What will be will be.

Im just a slave to the devil inside me.

My wonderful Family shine light when its dark.

It makes it easier to cope with an ill thought remark.

People dont understand the daily pain I face.

I wonder how many would cope with it if in my place.

I am strong and will hold my head up high.

Society I face with a huge angry sigh.

What people cant see they don't understand.

Please educate yourself everyone is my only demand.

I have an illness which sadly has no cure.

So till one is found the pain I will endure.

I will fight on with my Sisters by my side.

This isn't our fault so why should we hide.

The carefree happy days set me flying free.

The frustration mounts when i'm knocked back to reality.

No reason no rhyme.

What will be will be.

I'm just a slave to the devil inside me.

PS: I have Endometriosis. I don't look ill as you cant see inside me. I will smile to hold back the pain. I will laugh to hold back the tears. I will find humor in my life. I won't grumble about petty things. I will be the person who lets you down socially. But treasure my Family more than most. 

Endometriosis is a chronic gynecological disease that, among other symptoms, results in life-altering pain. This disease is a leading cause of infertility, and significantly increases a woman’s risk of developing certain cancers. There is no cure for endometriosis. The disease affects anywhere from 10-20% of the female population, yet very few of us are even aware that it exists. As a result, women suffer alone and in silence. Diagnostic delays may last for up to ten years while women continue to suffer and the disease worsens. Early diagnosis is essential in at least lessening some of the symptoms of this disease, but women cannot seek appropriate care if they are not aware.

PPS: I may be your Friend... Daughter... Mother... Wife... Sister... Auntie... Or Cousin... But I will be misunderstood by many people.

Its not the End of the World People!

Have you heard young people saying, ‘I am frustrated with this life? I don’t really think I’ll be happy ever!’ or ‘Life is so unfair to me!’  I always wanted to slap people when they say this.

Oh come on! How old are you? And what has happened to make you so frustrated that you have lost all hopes?

I belong to this group of young adults who get often frustrated with their life, so let me guess… A love failure? Failed in a semester? Or you lost your job?  But are these things the end of your life? If you had failed in love, you will definitely find someone better than the one who left you and did you ever realize that if the person who left you wouldn’t have done that if they had really loved you? You failed a semester! Fine, there is always another chance, you weren’t expelled! Even if you were, there are other colleges or better opportunities.

Life is never unfair to us; it is we who don’t use the opportunities that are thrown at us. It’s we who make the choice! We choose to be irresponsible and fail that semester! We choose to deny and move on; we choose to cheat ourselves saying that our partner still loves us when it is clearly visible that they don’t anymore! Likewise, we choose to think that our life is frustrating. It’s all in your mind and the way you think. When I lose something, I think something better is on its way and it will soon reach me. I choose to move on and not stall, I choose to smile and not cry. When life hits me hard I choose to learn and not quit!

Remember, its faith and confidence that will keep you going, you cannot lose faith on yourself, you have stay confident and strong enough to get over the hurdles.

You have not lost hope and you will never lose until you decide that you have lost it!  That’s why they say, there’s always light at the end of the tunnel.

Keep smiling, keep trying and keep going because you have miles to go before you sleep and make the travel memorable and worthwhile!

Loved by Many II (Happy I am)

Recovering..

And I'm bed resting as my doctor recommended and staying at home happily. I was this out going girl who never missed a chance to go out and have fun. Everyone was worried that it would be a difficult for me to do so and nobody ever thought i could stay at home for this long. hahah even i cant believe im doing this. Actually I never stayed at home for this long before, but now I'm loving this.

Yes I really mean it this time. I'm loving it and Im loving my life. why?
Well, why not?

 Anyways Im in no mood to explain why im happy and all that, but would love to share this amazing piece of writing, just read this and be happy. 

"

• I remember the morning that I first asked the meaning of the word, "love." This was before I knew many words. I had found a few early violets in the garden and brought them to my teacher. She tried to kiss me: but at that time I did not like to have any one kiss me except my mother. Miss Sullivan put her arm gently round me and spelled into my hand, "I love Helen."
  "What is love?" I asked.
  She drew me closer to her and said, "It is here," pointing to my heart, whose beats I was conscious of for the first time. Her words puzzled me very much because I did not then understand anything unless I touched it.
  I smelt the violets in her hand and asked, half in words, half in signs, a question which meant, "Is love the sweetness of flowers?"
  "No," said my teacher.
  Again I thought. The warm sun was shining on us.
  "Is this not love?" I asked, pointing in the direction from which the heat came. "Is this not love?"
  It seemed to me that there could be nothing more beautiful than the sun, whose warmth makes all things grow. But Miss Sullivan shook her head, and I was greatly puzzled and disappointed. I thought it strange that my teacher could not show me love. 

• Miss Sullivan touched my forehead and spelled with decided emphasis, "Think."
  In a flash I knew that the word was the name of the process that was going on in my head. This was my first conscious perception of an abstract idea.
  For a long time I was still ... trying to find a meaning for "love" in the light of this new idea. The sun had been under a cloud all day, and there had been brief showers; but suddenly the sun broke forth in all its southern splendour.
  Again I asked my teacher, "Is this not love?"
  "Love is something like the clouds that were in the sky before the sun came out," she replied. Then in simpler words than these, which at that time I could not have understood, she explained:
  "You cannot touch the clouds, you know; but you feel the rain and know how glad the flowers and the thirsty earth are to have it after a hot day. You cannot touch love either; but you feel the sweetness that it pours into everything. Without love you would not be happy or want to play."
  

  The beautiful truth burst upon my mind — I felt that there were invisible lines stretched between my spirit and the spirits of others.                               " 

                                                                                                        

                                                                                         Hellen Keller - The Story of My Life (1903)

PS: Inspired..  :)