The 'Pretender Mask' I'm No Longer Wearing to Cover My Illness

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The Pretender Mask.

The smile that hides the pain.

The “I’m fine!” on days we definitely are not fine.

The tough I’ve-got-this front when we’re falling apart inside.

Everyone I know with a chronic illness has been behind the Pretender Mask.

Sometimes, it’s because we don’t want to explain our illness yet again. It’s exhausting, especially when the illness is one that doesn’t show on the outside. Invisible illness often leaves us feeling as if we have to validate it. We look fine, so how can we be that sick?

Sometimes, it’s because we don’t want others to worry, or maybe because we just want to be “normal” for a little while. That cashier doesn’t know us — to her we can be just another person, not the sick one. We won’t be interacting with her long enough that she has to see how not OK we really feel as we smile and make small talk.

And sometimes, it’s because we can’t admit to ourselves that we won’t be able to kick this thing’s figurative ass. Oh, we can fight it, yes. But the sad truth for many of us is that’s all we can do.

And it’s hard to accept that. It’s terrifying.

I wore it for over a year, that Pretender’s Mask.

A year or so of acting tough and telling my friends I would be OK, I was going to get better, I’d find that magical treatment.

I’d kick its ass.

I was terrified. I still am. And every time a new symptom crops up or the pain derails my day and confines me, I get terrified all over again.

I haven’t given up hope for a treatment that will help. But now I know and admit to myself that’s all it will do — help. I’ll still probably be disabled and not have a “normal” life (not that I’ve ever been “normal,” anyway).

And for some people, that’s off-putting. They see it as giving up, as settling for less.

It’s lost me friends.

And that hurts.

But what it is is being real and being realistic. I try to be optimistically realistic, and I usually succeed.

And I’m not pretending any more.

Not for anyone.

I won’t shove my disorder under a blanket to fit in someone else’s comfort zone — even my own comfort zone.

That’s a luxury I don’t have anymore.

I’m a fighter. It’s what I do. And I can’t fight something that I’m hiding.

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What It's Like When You're a Mommy Who's Sick Every Day

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“Are you feeling better, Mommy?” This is a question I get asked almost daily by my 4-year-old. I used to just say no, I’m not. She kept asking though, and it’s sweet, but I started to wonder what her meaning of “better” was. So, I asked her, “What would it mean if I felt better?” Her reply hit me, and hit me hard. “It means you can pick me up, then we can go to the park or gym and play.” <Insert me trying not to cry>

What does it look like to be disabled mom? For me it’s…

A sad and confused toddler just wanting Mommy to play at the park or walk behind her play on her motorcycle.

A teen not seeing her mom in the stands at her volleyball, basketball or other sports events.

• A husband getting upset and disappointed because yet again date night was canceled.

• A friend getting sick of asking “How are you feeling?” because they get the same reply each time: “Tired, sick, sore, etc.”

• A parent calling to check up and feeling helpless that they can’t help their daughter feel better.

• Siblings not knowing what to say or how to say they care.

• Me, feeling the loss of hope and seeing the sadness she causes others.

I’m sick every day, all day. I don’t get a day off from being sick, no vacations. My body doesn’t say “OK, so today you will be 100 percent fine, but watch out for tomorrow, tomorrow will suck.” It doesn’t work that way. Some days I will feel better than others, but there is never a day where there is nothing going on — there is always something.

I have always loved makeup, but the reasons have changed over the years. When I was younger, I liked it because of the colors and it made me feel pretty. Now, it seems I like it and wear it like war paint. It covers up my blotches, makes my eyes brighter, and covers the bags of little sleep. It’s a mask, and it can hid how I feel. There are days that sitting up is a challenge and takes most of my energy. So if you see me with makeup, please don’t assume I’m not sick or in pain. I am, I just want to cover some of it up. I just want to look “normal.”

I want to say sorry to my family and friends. And this is what I want to apologize for:

To my youngest: I’m sorry I can’t always be there. When we go out, I have to use my cane, or a wheelchair, so places are limited. I’m sorry that I can’t lift you up and I can’t go play in the park. What I can do is snuggle on the couch or in the bed with you watch TV, or read a book.

To my teenager: I’m sorry I can’t always take you shopping and can’t be at all your games. I can help you with makeup or your hair and listen to how your day went, how many points you scored or what project you have coming up.

To my husband: I’m sorry I can’t always go on date nights, or even a drive. I’m sorry pain and sickness gets in the way of being in the mood. I can talk about your day, rent a movie on demand, and I’m really good at ordering takeout or delivery.

To my friends and family: I’m sorry I’m not the best daughter, sibling, or friend sometimes. I’m sorry I cancel plans all the time, or can’t come see you, making you come to me. I can, however, text, video chat, talk on the phone and make up for it with awesome products I get for review.

Lastly, to strangers I have yet to meet: I’m sorry if I seem impatient at the store. It’s mainly because I don’t feel well enough to be there, so I just want to get in and get out.

So, you may be wondering “Well, what can I do?” Of course every person is different, but I think understanding is something everyone wants across the board. Understand that I want to do things that I used to do, but can’t now and it’s out of my control. There is a saying I heard, and I think it’s so good. If you see your loved one having a bad day say to them (and please mean it, if you say it) “What can I do to help make your day better?”

• Children: Try to stay quiet or offer to pick up, and of course listen, just listen.

• Husband: Cook/pick up dinner and take kids out to the park or a walk. Understand that it may not look like your wife may got anything done that day, but that doesn’t mean she doesn’t care.

• Friends: If possible, ask to take the kids to school (I know, not always possible). Send a text saying, “I know it’s probably not a good pain/med day for you, but I’m here to listen if you need to talk.” A kind word goes a long way.

• Parents: Just keep being the best parents you can, even though it’s hard seeing your kids sick.

• Siblings: Call, text but also don’t be upset if it takes a while to get back.

• Strangers: Please be kind. Don’t stare, don’t laugh or mock, just be kind. I’ll use the word again: understand. Understand that people with disabilities are just like you and have feelings — we just can’t do things that you can do.

And finally, I want to say thank you. Besides my family, I have a few amazing friends I wouldn’t trade for the world. They have seen me on good days and bad, and yet they are still by my side. I couldn’t do it without them. I may be strong willed, but I know my limits, and I wouldn’t be here today if it weren’t for them, my family or a kind word from a stranger now and then.

This post was originally published on Top Notch Material.

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Answering 'How Are You?' From the Maze of Chronic Diseases

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“Hey… how are you, Shannon?”

How am I? I don’t think everyone wants the real answer.

But here is the honest, scary truth — I’m lost in a maze of doctors who all seem scared to touch me for fear of anaphylaxis or death or that the insurance doesn’t want to pay anymore. It’s hard for others to know what’s going on because I truly don’t even know what’s going on.

My TPN (total parenteral nutrition) and central line were taken away because my insurance didn’t cover it anymore, and sadly, you can sometimes get treatment and other times you can’t. Getting treatment can be hard.

I’m not the hospital. I’m not better, and I won’t be better soon. I’m not stable, I’m not healthy, I’m not able to eat very much, and when I do, I spend time vomiting. I’m in pain, I’m malnourished, I’m not doing great…

Mood wise, I have good days. I have days when I am happy to be alive and thankful for the health I do have. When I am able to go shopping for a dress. I’m happy for laughs and giggles, and I’m happy for smiles and things. But I also have days when I can’t imagine living in so much pain. I can’t help but cry when the pain, the life I live seems too much. But I feel those emotions and then try to move on.

How are you? I will most likely never find a cure, but today, tomorrow, and for the rest of the weird life I live, I will keep going. I will fail, I will fall, but I will not fail my failing body. I will not stop going.

How am I? I may not be OK, but I’m happy. I love living my life. I love my friends, I love laughing, I love watching movies, I love TV, I love FaceTime, I love “The Walking Dead,” I love my blog, I love my friends’ blogs, I love vlogs, I love being alive, even though every day is a new day for me to die in a new way, and every possible bad thing can happen. But how am I? I’m glad… I’m glad to be here…

And to everyone else who is also lost in this maze, it’s all right to be lost right now. It’s all right to not be all right — you are not failing yourself when you ask for help. When you tell someone you are not all right, you’re truly being brave. It’s a good first step to make.

I’m dying, but I’m living. How are you doing today?

When you have theses diseases, you sometimes fall into that maze. But if you do, just remember the view can be very beautiful. I’m just praying that the maze isn’t made of corn, or else I’ll need my EpiPens and Benadryl.

Thank you for asking and caring.

How are you? Truly — how are you?

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I Have a Disability, Chronic Illness, and Will Make an Awesome Mom One Day

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I am disabled. I have medical needs unimaginable to most and I require lots of help medically and practically to live my life as others do. My ill health is complex, fragile and hugely life-impacting. I cannot get definitive answers as to where this will lead, because those answers do not exist. But, I still have what it takes to be a mom.

That wasn’t what you expected, was it? I get it. There was a time when I would have found that to be a strange statement to include also. But I am writing this today because my experiences have lead me to understand the common outlook society has. Education is needed so the judgement I and many others experience changes in a positive and constructive way.

Those who know me well know I have a wonderful boyfriend who makes me happier than I ever imagined possible. He brings out the best in me and works with me to make my less-abilities easier on a practical level. He is not my caretaker. ‘Caretaker” is not a word I feel describes my partner, because the reality of our situation is like any couple (admittedly on a more extreme level). We pick up on each other’s weak spots and fill in the gaps to be the strength needed for each other. While his help is wonderful, I would not expect someone who loves you wholeheartedly to care any less. So if “caretaker” is a term we feel necessary to use, that will have to be an interchangeable term for the both of us. Stick with me, I promise this will make sense soon…

I am disabled, but I still make my partner happy every day, with the warmth from his smile as conformation. I still cook him dinner when I can. I try to do a task myself before ever asking him to take over. I am still the person he chooses to come home to each day. I have still been able to create an equally rewarding and content relationship. I can love like any other. I can commit my feelings and dedication. I am still able to turn chaos into something wonderful. I feel that I could continue this patter with another life-changing but incredible addition to my life, a child.

I am not “incapable because I cannot walk.”

I am not “selfish for wanting to bring a child into my life knowing it is likely they will have to witness
hardship.”

I am not “selfish.”

I do not “need to content my mother instincts through the children of friends and family.”

This yearning is not “too unrealistic” and it certainty is not a “delusional pipe dream.”

My physical weakness is not “indication I wouldn’t cope with the demands of having a child.”

I should not have to “try a bit harder to get better first.”

Disability would not “automatically disadvantage my parenting abilities.”

Yet every statement made in the previous paragraph have been said to me while broaching the subject of parenting. This is the reason I felt the need to post this today: to show that the absurd points of view I have had to put up with time and time again need to stop! Just as I have proved with my boyfriend, I
will at some point in the future (when we are ready and we make that decision) prove that my abilities are still perfectly within the remit of a dedicated, loving, fully invested parent.

I am a great cook and I will take great care in the physical nurturing of my child. I will always do my upmost to do everything I can myself for my child (just like any other parent) but act responsibly and ask for help for things not within my capabilities. I will still be my child’s number one fan. They will still run back to me for consoling when they graze their knee. I will still show my child love, boundaries,
trust, discipline and respect. I will teach them manners and positively reinforce their good behaviors. I will teach them diversity so that they are able to confidently lead the next generation into a place of acceptance for all. I will nurture their hobbies and interests. I will guide them in making responsible choices. I will hug them through tantrums and tears. I will congratulate their successes. I will master the voices in characters of their favorite bedtime story. I will help them explore their surroundings. I will teach them the importance of checking each way before crossing the road. I will have stickers on hand for the potty training chart. I will make their favorite pudding on a Friday as a treat. They will have the most amazing costume for World Book Day. I will listen to their worries. I will comfort them through thunder storms. I will I will strive for the best for my child, just like any other parent.

With my wonderful boyfriend at my side to support our family unit the same way we support each other now, we will pick up on each other’s weak spots and support those gaps so that together we will make a team (and a pretty awesome one if I do say so myself).

So this is my public announcement. Please think twice before choosing to share your opinion with me and really think hard what impact it is likely to have. Imagine you feel pain with each and every baby announcement, shed tears over pregnancy test ads and have a constant anxiety from feeling judged when the topic arises or completely dismissed like it couldn’t possibly be an option. I would like you to imagine the slap in the face feeling when you’re told “at least you are being responsible” or “at least you are making the right decision” along with all the others I have mentioned. I am chronically ill, I am complex and I am disabled. I will make a heck of a lot of mistakes. Those two statements? They are not linked. I am going to make an awesome mother one day!

Lead photo courtesy of Thinkstock Images

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Why I Don’t Want People to Tell Me There's a 'Brighter Side' to My Illness

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There is nothing more wonderful than having a supportive and loving family and friend network around you when you battle a chronic illness. I cherish every kind word they said or every wordless gesture that shows how much they care. I have, however, grown sick of the “don’t worry, there is a bigger picture” or “there is a brighter side to this, you’ll see” and definitely very tired of “you’ll be a stronger person for this!”

Yes, friends, I know you mean well. I know you mean to make me feel better, but I am someone who rationally does not see a brighter side, does not want to be any stronger if this is where strength is derived from and certainly does not believe any bigger picture is worth these stills. These phrases are all gibberish to me.

So what do I want you to say to me? I want you to acknowledge me, tell me you’re there by my side, remind me to take my medications, make sure I engage in whatever activity I can physically be part of whenever possible so I don’t become isolated in a sedentary lifestyle. I want you to say “I can’t imagine how you feel, is there anything I can do to make it better?” or even just act like everything is normal (my normal preferably) and just carry on a conversation not including my illness. But please, don’t tell me it’s all for a greater good or one day it’s all going to be worth it. To my pain-struck nerve endings and tired soul, those are condescending words. Lend me a hand wherever you can, help me laugh and make the moments I choose to push past my illness and struggle later memorable and worth it. Because as it all gets worse, it’s the memories that push me forward.

Yes, I hope for a treatment or a miracle cure. At this point I might barter my soul for it. But please don’t tell me that there is a bigger picture out there or a brighter side to all this pain because there really isn’t, not to me and not right now. You can even ask me “What should I say or what would you like me not to say?” because I am so, so tired that I have no time for beating around the bush and it’s so much easier to just tell you where the roadblocks in conversations are. My physical anguish is enough of a burden without having to carry the burden of holding my breath every time someone says something to me regarding my condition.

Honestly, sometimes, just say nothing but be close at hand. Hold me if I need it or just stay close. I feel your genuine love and presence keenly without the need for words. Just exist around me as you are. That’s all.

Lead photo by Thinkstock Images

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7 Lessons for Recovering Your Spirit After a Health Crisis

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When you become “chronically ill,” everything changes. You need to change your habits, drop hobbies and get used to this body that is not the same anymore.

But you know the biggest repercussion is not in your body. It’s not in your kidneys, in your lungs, or in your liver like the doctors are saying. It’s something more important to you, but sometimes your doctors and even your family forget.

When I got sick, I was only 17 and I was a happy teenager enjoying my life and falling in love for the first time. I had friends and a beautiful family who supported me in any decision, I really couldn’t ask for more.

But when everything started, a little bit of me just turned off. I imagine myself like a string of Christmas lights that suddenly start failing and consequently turning off. Every light is a part of me; my dreams and my beliefs.

It’s my spirit.

Your spirit is who you are. It’s the person that you have become after all these years as a result of your experiences. But you never had an experience like this before and you may feel this is the worst that could ever happen to you, so obviously this experience will affect you in a way you can’t even imagine.

Every time I have to fight to stand up and keep going, or that I survive a horrible flare, I feel
another light disappearing. They go away with all the energy I have to give to living, every day.

It’s been 15 years since my first light turned off and after that, this long fight had made dozens
of lights follow the same destiny.

But lately, I figured something out.

Some lights are back.

I notice that these experiences are not making me lose parts of myself, they are only changing me.

Some lights have even brighter colors.

Crises in your life, not only a health crisis, but also the death of someone you love, a big breakup, or whatever personally affects you in an unmeasurable way, are inevitably going to change you, forever. But luckily I’ve found that some good things can be taken from those experiences.

On my way to finding the good side of a crisis, I discovered that I should understand, and never forget, some lessons that were really helpful in this process, and I would like to share them today.

1. You are still you.

I realized that no matter how many lights are turning off or how many different colors are in my string, I am still here. Everybody is mutating during their lives, whatever happens. Every experience of your life will make you change, for good or bad.  So at the end, we are all beautiful multicolor strings.

2. Good things are still happening.

Probably, there will be some moments when you feel that things couldn’t be worse. I’ve been there. But with time, I noticed that good things were happening at that same exact moment. In my case, I was receiving so much love from the world that now I believe definitely helped me heal. My family was always there holding my hand, my friends were always there giving me better days, my colleagues were sending me their good energies, and even people that I don’t know that well were sending me
beautiful words. I was full of love. I felt proud of the ties I built for years and that in my hard moments gave me a shield of love from the world.

3. You can put the pieces back.

You’ll feel like this is the end of the world. That you are falling apart. But what I discovered is that I could put the pieces back or find new ones and continue, even stronger than before. I rebuilt myself into a better person, who knows real pain and now gives more value to the small things in life that are really important. Now the pieces really fit.

4. You can start again.

Probably because of this crisis, you are leaving tons of things behind. Maybe you can’t even have the same job or practice the same sport — but you can start again. You already built your life once, and you can do it again. It might be different, but you can make it good, even better. I was a speech and language therapist in Chile, now I’m writer-in-training in London and probably next month I’ll be something else. My life couldn’t have changed more and I love it.

5. You have a new opportunity. 

We always have our reservations about the life we are having. “What if” is a big question for most of the people. Well, here is the answer for your “what if.” If you were not comfortable before with what you did with your life, you have a new opportunity to take the decisions you think that will guide you to happiness.

6. You are strong(er).

Probably you felt sometimes that you were losing the battle. It may have taken you a long time to heal, but you did it! And you did it because you are strong, and after this you are even stronger. This definitely showed me how much I can handle, and that is a lot. After this, I feel invincible and I am ready for what life has prepared for me.

7. You are willing to live.

But the biggest lesson that all this gave me, with no doubt, is that I want to be alive. All my life I never stopped to think how much I love to be alive, but now that I have felt life slipping through my fingers, I don’t want to let it go! I know that is not entirely my decision, so besides of taking care of myself, I am going to enjoy life and make every day count.

I still have a long way on this journey and I really hope that is a very long one. These lessons will help me to face the future stronger. I only hope to keep learning and growing every day and being a better person, for me and for everyone.

This blog was originally published on Chronic Survivor.

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