Why We Need to Change Our Expectations When it Comes to Illness

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As a child, I was taught that certain things become expectations as we grow older. Things we learn to take for granted.

Things like when you go to the doctor the expectation is that they will cure you with medication or a procedure. Everyone with that illness will be treated the same way and generally with the same medication. When you have Elhers-Danlos syndrome, post orthostatic tachycardia syndrome, mast cell activation disorder, or a slew of any other chronic conditions, that’s not the case.

I think our expectations have to change, that they need to be adjusted to fit our circumstance. The truth is that chronic conditions such as these will not be cured in most cases. They will be managed, but being managed is not a cure. Not everyone with these conditions will be treated the same. Not everyone will get the same medication. Not everyone will respond to the treatment the same. Not everyone will have the same experience with the same doctor. There is no rhyme or reason for this. Perhaps it’s personality, perhaps it’s just an off day for the doctor or the patient. We really don’t know.

Since there is no cure, I believe we have to think of what we expect from the visit. That’s a hard thing to do. What we want is a cure and many of us can’t have it. So adjust. Really think of what you want. Do you want to be able to accomplish more during a typical day? A medication with less side effects? Less pain?

What are you willing to give up to get your expectations? Are you willing to do less but feel less pain? Are you willing to endure more pain to accomplish more? Are you willing to make radical changes to your diet? To your lifestyle?

It’s all about adjusting your expectations. Adjusting your expectations allows you to have some peace of mind, and some control. Sometimes by not adjusting your expectations, that leads to frustration, depression and a fear and distrust of doctors and medicine.

So, I advice that we all adjust our expectations and live the life we’ve been given.

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8 Basic Things Healthy People Take for Granted

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I have hypermobile Ehlers-Danlos syndrome, which is a genetic connective tissue disorder. It often leads to a ton of secondary problems.

For those who are healthy and carefree, you take so many things for granted that I can’t anymore. Here are a few.

1. Breathing. Now, isn’t that a given? We live, thus we breathe (or the other way around?). Every being that is alive breathes, without even thinking about it. Don’t we all?

No. My breathing is often shallow, and breathing causes me pain. Mostly because of a condition called costochondritis, an inflammation of the cartilage between sternum and ribs.

2. Eating. Once again, people eat to stay alive, don’t they? Well, not all of us. I have friends who need to use a feeding tube. I, for one, have a very strict diet, trying to accomodate two different problems: gastroparesis (low fiber) and low blood volume (high sodium and lots of fluids). I can’t eat more than a cup’s worth at a time. Eating usually leads to stomach pain or nausea, sometimes to throwing up. At times, I can be weeks on a liquid diet, without being able to eat actual food.

3. Sleeping. Everybody sleeps, and sleep means feeling rested, right? Actually, the more I sleep, the more pain I’m in. Thanks to my hypermobility, I dislocate a shoulder or sprain an ankle pretty much every night. I barely remember what waking up refreshed means. And thanks to my small fiber neuropathy and arthrosis, some nights I’m in too much pain to sleep at all.

4. Standing up. Do you realize how lucky you are to just get up and stand? To be able to wait in line at the amusement park or at the grocery store? With postural orthostatic tachycardia syndrome (POTS), I’m at risk of fainting if I stand up too long. An unexpected line at the cashier can be dangerous.

5. Walking. Now, if there’s something people do without thinking about it, that’s it! Get up and go, right? Walking hurts me a lot, and the more I walk the more the pain grows. I tore ligaments under my left foot just by walking, and I have arthrosis in most joints. It happens that my legs just go weak, too. I sometimes use a cane, crutches, a rollator or my wheelchair.

6. Showering. It’s part of the routine, quickly out of the way… but not for me. Because of POTS, I need to plan the shower, I often need to use a shower chair, and it always leaves me weak for hours.

7. Cooking. You might see it as a chore, or love it like I do, but I’m guessing you don’t actually think about it. Many days I can’t cook at all. Sometimes, I start a recipe, and I get too weak to finish. There are also many things I can’t do anymore in a kitchen. Cutting, stirring, lifting… all because of injuries in wrists, dislocation-prone fingers and the likes.

The writer standing in a field of flowers, with her wheelchair in front of her.

8. Working. Everybody needs to work to make a living. But I often can’t. When I can, it has to be from home, and I can’t do a lot. Which is why I’m a freelance editor and translator.

Talking on the phone. Using the computer. Playing video games. Driving.

None of those seem difficult. I mean, what’s more simple than casually scrolling on your smartphone? Well, my arms and hands cramp up, they become sore very quickly, and it’s basically torture.

I could go on, but I think you get the drift.

I used to take all of these for granted, before my condition deteriorated. I knew pain and feeling weak, but it was in no way comparable to now. So I know how easy and normal it is to take the basic actions in life for granted.

I now also know how they shouldn’t be. Enjoy what you can do and take care of yourself!

Annie-Danielle Grenier blogs in French at Ma Vie De Zebra.

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Choosing to See the Good in Life With Ehlers-Danlos Syndrome

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Being sick is rough. It is all day, every single day. Sure, some days are better than others. I even have brief moments where I temporarily almost forget I’m sick. Then, inevitably, reality hits with a vengeance. I have one child who doesn’t have Ehlers-Danlos syndrome and one child who does. Duty calls. If I have a particularly rough time, life continues. The world continues to turn. Sports practices, homeschooling, nursing, caring, comforting, Boy Scouts, homework, housework, bills, groceries, quality time, and everything goes on. My obligations and life did not get the memo.

 

I really don’t feel well. In fact, most of the time, I feel practically wretched. There are days I drag myself into the shower, drag myself to brush my hair, hold onto walls to keep from falling. There are days I must tell my sons that the walk at the park just cannot happen that day. There are so many days that seem to never end, brutal days full of exhaustion, pain and struggling.

There are also bright days. There are days I find myself laughing so hard I can barely breathe, despite feeling like I could keel over. There are days I amaze myself by simply carrying out the duties for the day successfully. There are days I look into my children’s faces and see enough innocence and hope to carry me through. There are days when I truly fool everyone around me.

In all, despite there being so much struggle, I wouldn’t change it for the world. I cherish each moment, because I know how hard life can be. I do see the other side, the sun through the storm. I see the same beautiful struggles and triumphs in my sons and in what my family endures.

It is a choice to see the good. It isn’t always an easy choice to make, but it is certainly remarkable to see.

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Thinkstock photo via AndrewSoundarajan.

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What You Can Do To Help a Mom Who Has to Make Difficult Decisions for Her Sick Child

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Preparing for the birth of my boys, I read all sorts of conflicting articles about what was best for my babies. Some typical topics
included breastfeeding versus bottle feeding, cry-it-out versus attachment parenting, and organic food versus non-organic. I wasn’t prepared for the shear amount of difficult decisions or for the upcoming criticisms of whatever I chose, but it was clear I wasn’t the only mother having to make those choices. All mothers were.

However, when my youngest son became chronically ill and diagnosed with Ehlers-Danlos Syndrome, there was a loneliness in the decisions that I had to make. It was completely overwhelming.

When should I take him to a new specialist? Are the medications sufficient? Will we financially be able to cope with the medical bills? What about side-effects? Could he tolerate another invasive procedure, surgery or test? Does this accommodate his special diet? When will he use a mobility aid? Should I let him play on the park playground? How do I teach him about himself and how do I teach others? Is he having a quality childhood? When do I worry? When do I not worry?

 

As if these never ending decisions aren’t enough to handle, the unsolicited advice and criticisms took on a life of their own. I would get personal messages about what type of new and improved supplement my young son should be taking. I was told he shouldn’t do this physical activity, but he needs plenty of exercise. I was sent many diets and programs. It was a solid trail of “you should” or “you shouldn’t” or “why don’t you.”

I knew the “solicitors” weren’t meaning harm. I knew that, but what I really wanted was a hug, or reassurance, or someone to go to lunch with to take my mind away from it all. I think sometimes this “advice” originates from others wanting to do something to help. Friends and loved ones can feel helpless and want to do something, anything.

Well, here is something you can do: listen, ask questions and be present.

Please don’t run or retreat, and don’t offer unsolicited advice. As mothers, we do the very best we can for our children. It isn’t easy to have a sick child. There isn’t a handbook or golden rule — as much as I sometimes wish there were.

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Why I Won't Apologize for Saying 'No' Because of My Health

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Twenty year old me was the life of the party. Yeah, I had a 2 year old son at home, so most of my time was spent working, taking care of him and school. However, those rare moments out were spectacular. I owned the dance floor and easily took full advantage of a girl’s night out. I was vibrant and boundless energy poured out of me like a seasoned rockstar. I’d grab a chance to jump on stage and dance for hours, letting the vibration of music shake my bones until I couldn’t stand any longer.

As 20 turned to 30, those nights grew fewer and farther in between. I noticed a change in my tolerance for being in a crowded place, the sounds were too loud and the smoke made my voice raspy. I was in denial that I didn’t quite enjoy it any longer. I did it though, because that’s how my friends knew me and that’s how we got together. We would bar and club hop, and dance our asses off. I’d pay the brutal price for the next week – but heck, it was worth it!

At 35, I may as well have turned 70. Entering a club felt like torture. The change in those five years were horrifying. All my prior manageable and hide-able symptoms were on display for all to see. Well, not physically, as I still looked like I was in my 20s. Inside, however, my body was rebelling from years of over-use, a bad diet and an un-nurtured rare disorder. I had just announced my health journey with my friends, but they didn’t grasp it since I still looked healthy.

I felt obligated to attend everything I was invited to, even if that meant putting myself in a place where it would take weeks to recover. At first my friends were disappointed and even upset, which crushed me. Then I realized something important. If they cared enough about me then they would realize that I’m not 20 year old me anymore. I won’t apologize for it again and I certainly won’t apologize for saying no.

The writer sitting on a couch, making the "peace" sign.

When I can’t or don’t want to do something, I will simply say, “No thanks, not this time. Have a great time though!” When you deal with pain on a daily basis, a magical thing happens – your time becomes so precious. I’ll happily say yes to the things that I can do, knowing I may need to cancel, but I won’t apologize for it.

I can’t control my Ehlers-Danlos syndrome or related illnesses and flares, so by saying I’m sorry shows that I feel like I’m at fault and I’m not. I didn’t choose this illness, but I can choose to say no when my body needs me to.

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How Ehlers-Danlos Syndrome Has Turned Me Into a Superhero

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Like most superheroes, I found my powers by accident.

On what was meant to be an epic sibling vacation in Las Vegas, I found myself unable to walk for more than 10 minutes. I had never experienced such agony. Before the day was done, my superpower revealed itself: the power of invisibility.

I could hide my pain, my fatigue, my confusion and no one could see it. On the outside, I look like an ordinary young woman. But on the inside, my bones shift and tendons stretch, causing painful dislocations and subluxing of various joints. With my superpowers, the power of invisibility, I can continue to look like an ordinary woman.

Of course, with great power comes great responsibility. I can only use this power for the good of others, to save them from feeling pity, or to save them from their own despair. Invisibility is not to be used for my own gain. I must adhere to the superhero code, do not deceive others so that I may gain favor or sympathy. I must not take advantage of those who come to my aid. And of course, I must help others as well as I am able.

I was gifted a second superpower, but only if I follow the code. This second power came through perseverance and constant training. This power may only be used in the presence of those who need it the most. To the people who struggle with hardships and heartache. This second power is the power of “revelation.” I can reveal my own suffering to them, show them the way of embracing pain and frustration, and change it into strength and courage. This gift is far more powerful than super strength, or super speed. It is a gift that I can give to others, and they can also give.

There are those who will try and take that gift from me, the naysayers and the envious. I must guard my gift of revelation from them and use my invisibility gift wisely. With a smile, I face my enemies using only my quick wit and well-practiced art of socializing. I battle my way through enemy trench lines, while seemingly enjoying myself at small gatherings and parties. My invisibility is both my power and my cloak. No one can see the superhero underneath the shroud of invisibility. This hidden power can only be stopped by absolute denial of truth. Only then can my enemies see the strength of my powers. They see my power of revelation, my invisibility, and they cower before me. They will come up with names to distract me, “The Hypochondriac,” and “The Exaggerator.” Little do they know I have the power of science at my side, and my own little sidekick, “The Truth.”

Of course, if I let my enemies know that their words are hurtful, then they will increase their attacks. As long as I remain true to myself, and keep my hero conduct, they can never truly hurt me. Words are only as potent as their receiver keeps them. In the end, the naysayers and the envious only hurt themselves. As I spread the gift of courage and strength, they spread the idea of doubt and weakness. Do not believe them, our strength makes them feel weak and our courage makes them fearful. Be wary of these foes, but do not stoop to their diabolical tactics. Heroes hold themselves to a higher standard of conduct, whereas villains care not for the moral high ground.

In the end, it all comes down to how I see myself. I could see myself as a young woman with a painful and scary chronic illness. I could look at my cane, my braces, at my own frailty and let myself feel pity and wallow in it. I choose not to. I choose to fight my battles every day, and inspire others to do the same. I choose to be stronger and do whatever is in my power to live each day to its fullest.

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