Well There Go All My Plans

I could die.

I have been struggling for the past month to wrap my mind around this diagnosis and trying to come to terms with what it means. There are so many new factors in my life that are realistic possibilities now.

I might need open-heart surgery…

I had a path before me, it was so carefully constructed and I had put so much work into it to make it what it was. I’m starting PhD school this year.

I could die.

The path I had always envisioned was never easy. PhD school isn’t easy. It requires hard work and a dedication that is almost unimaginable. 40-80 hour work weeks on top of already taking classes. I would work over weekends as well.

I might need open-heart surgery…

I don’t know how to do that with Loeys-Dietz Syndrome. I don’t know how to work this into the path. With the yearly scans (if I’m lucky) or the surgeries (if I’m not lucky) everything has just become so much more complicated. I know that plans never go as expected and I know that complications will always arise, but this just seems unfair. I don’t know how to do this. I never planned for this. I am so close to achieving my dreams and just so horribly close to losing them all too.

I could die.

And it terrifies me.

Anony-mouse

Above everything else, with my disease, I am anonymous (or anony-mouse.. as this seems to be my “sick spirit animal” as featured in another post). I feel that if people were to know about my disease and how weak and sick I sometimes feel, I would be viewed and judged as “broken”.

This train of thought brings up a question that I have seen asked many times in the chronic illness community: Would you rather your illness be visible or invisible?

I see many different answers to this question, but the one that seems to be most common is: No, I do not want my illness to be visible.

You see, there is a catch-22 with this question. Having a visible illness means multiple things. You are clearly sick. Which means you are not faking it. No one will accuse you of being a hypochondriac or over-exaggerating your symptoms. While doctors may not know/understand what’s wrong with you, they probably will not say that it is all in your head. But then, on the opposite hand, everyone knows you are sick and they will make many assumptions based on that fact. With a visible disease, you are at the mercy of how people feel they should treat you instead of how you want to be treated. With a visible disease, you can never escape your reality. There is no hiding from your disease or hiding the disease.

And that’s the downside of a visible disease. There are many of my symptoms which are viewed as, at the very least, awkward, and at the most extreme? Disgusting or shameful. Like today, for instance, I went to the bathroom (already uncomfortable?) and when wiping noticed a bright read streak. I looked in the toilet bowl and saw drops of blood floating in it. There are some aspects of any disease which are found to be embarrassing or awkward. This is part of the negative stigma associated with disease.

Much more harmful, however, is that all too often, if someone views you as having something physically wrong, they will often assume that you also have something mentally wrong. So as soon as you present with an illness, your intelligence is questioned.

Working towards a PhD in molecular biology is a demanding and competitive field and I am terrified that any hint of my not being capable of doing something will mean an automatic disqualification from even trying. I am afraid that the strain of working towards a PhD will make my invisible illness more visible. If this does happen, I’m very afraid of how my advisor and fellow classmates will view me.

There may be a day when I am confident enough in my own abilities to not care how others may view my capabilities, but till then, I plan on being anony-mouse.

A Warning….

A warning to those who participate in support groups: They’re both wonderful and terrifying!

In these groups, you’ll meet people who share your disease. You’ll see how strong they are, how resilient they are, and how weak they are. You’ll see people live with your shared disease…. and die from it. You’ll see the obstacles they overcome, but also how terrifying those obstacles are.

The support groups will show you just how bad your disease can get. They’ll surround you even more with the reality of what it’s like to live with your disease. You’ll have your own medical appointments, tests, hospital stays, visits to the ER… but then you also get to see everyone else’s as well. Not only are you living with your illness, but also the illness of those you support.

These groups offer so many benefits, but they come at a price. They are an amazing thing to be apart of. It’s truly wonderful to be connected to people who know what you’re going through. You can get so many answers to questions and also validation for much of what you’re feeling. But they also keep your illness at the forefront of your mind. You fear what new symptoms you might get. And when you do get a new symptom? Suddenly you’re terrified about what that new symptom might mean. You look up diseases that others’ have that you haven’t even heard of.

It’s like Dr. Google telling you that that bug bite you have is actually cancer. Only worse. Because so many other people with your illness showed the same complication and now has the same new diagnosis.

Never mind the fact that the support groups seem to bring out the newly diagnosed and those with the worst cases.

Thank God for the old-timers of the group who are there to remind you that you’re not likely to die any time soon.

So while I love the support I have received from the groups, sometimes I need to remind myself that everyone is different. Having the same diagnosis does not mean that my illness will follow the same path.

Am I My Illness??

Does my illness define me?

This question has haunted me for a while now. I call it a “mirror question”. A question that I’m afraid to truly ask for fear of what I’ll find out about myself.

For a while, I had thought that perhaps I was my illness. Maybe it was something that I had let define me. But worst of all, I was afraid it was something about me that I  liked. I would stay up at night thinking “what would I do if I didn’t have these symptoms?” and to my horror, I felt upset at the idea. So did this mean that I had let my illness define me?

No.

My illness does not define me.

It took me a little bit of time to realize that, but first I had to be brave and finally face my “mirror question”. When I finally thought about it however, I realized that the lack of knowledge about what was affecting me was the thing that was making me upset. This is a bit tricky and a tad convoluted, but I hadn’t quite realized that if I didn’t have my symptoms, then I wouldn’t be sick. All I had considered was that I would have to start all over in trying to figure out what was wrong.

Once I realized that this was my hang up, I was able to answer my question honestly: If I didn’t have these symptoms I would do everything that I already am doing, but it would be a lot more easily done.

So what am I?

I am a Masters student in biology. I will soon be a PhD student in cellular biology (I got accepted into three programs!!!). I work full-time hours. I have many hobbies that I enjoy. I have friends who I hang out with.

So what does my illness add to this equation?

It makes everything so much harder. Those full-time hours? Being a graduate student? Those are so very hard to juggle by themselves, but with an illness? It’s a challenge. And that’s me being modest about how much of a challenge it actually presents. Often, I feel like a failure, because I can’t do it as easily as most people seem to be able to. I have limits. My illness gives me limits.

I would give anything to be able to get rid of those limits.

5 Realities of Living With a Chronic Illness

Don’t hate me for being one of “those people” but I’m going to jump on the “The Fault In Our Stars” bandwagon here. I know that many people have fallen in love with this book/movie and that even if they can’t relate as well with the characters, they can live through their stories and appreciate it. After all, who doesn’t love a good “sick person” story every now and then? And there certainly has been an increasing number of them coming out lately (personally, I want to watch Red Band Society). They make good stories after all. As long as the average person can put it down or turn it off at the end of the day and return to normal daily life.

For me, however, these stories tend to really hit home. There are so many messages in it that the chronic illness community has been trying to espouse for years now:

  1. We are NOT inspirations for the simple fact that we EXIST. This is the basic function of life. Existing. You might as well find a virus inspirational. After all, they exist without even being alive. Now that’s talent! Seriously though, just because life happened to give me a different challenge than it gave you, and just because you can’t imagine yourself with my particular challenge, does NOT mean that I am inspirational for dealing with it.
  2. We ARE excluded. We are looked at strangely. We are avoided. We are talked around. We are talked about. We are so many things that you THINK we don’t know about. I know why the elderly couple in the waiting room keeps glancing at the strange 20- something young adult and whispering in hushed tones. I know why I’m given the shocked looks when the nurse calls my name and I actually stand up and follow her. I know that my co-workers talk behind my back about all my call-offs and doctor appointments. I know what that worried glance means when I’m sitting or laying on the floor in a public place. As if you’ll actually be required to step in and do something. And how distinctly uncomfortable my pain is to you.
  3. Are we worth it? This is a thought that often runs through our minds every day, multiple times a day. “Great, he has this sick pathetic person as a mate. He must hate what I have become. I am such a burden.” How can we not think that? Doctor appointments aren’t fun. Would you want to go to them weekly? We don’t. We certainly worry that our friends and families don’t either. I go through phases where I just want to hole up and hide. Don’t look at me. I’m shameful. I want to be sick in private. It’s my own personal shame that others shouldn’t be subjected to.
  4. There is pain. There is always pain. I may look at you and say I am feeling fine and dandy and that today is a perfect day…but… that is only because I am referencing it to another day that wasn’t as fine or dandy. A day that was hell and that makes this day look like a warm cheery bonfire. My scales are different from another person’s. If you lived in pain every day, you would start rating a normal 2-3 as a 0 or 1. After all this is the baseline. This is the normal. Also, this goes back to #3. If we are feeling particularly insecure about our illness, we will hide how it affects us.
  5. There is fear. There is always fear. Chronic illnesses are uncharted territories. There is no easy guaranteed course that our disease will take. There is no promises that once A happens, it will lead to B, then C is next…etc. All there is, is a big huge UNKNOWN. And that is freaking terrifying. Many people try to comfort us by saying crap like “well I could get hit by a bus any day” or “We’re all dying”. It. Is. Not. The. Same. I’m facing dying by a lingering possibly progressive, painful disease. I’ll take the bus next life-time.

There is so much involved in being sick and the longer you’re sick, the more there is to deal with. Living with a chronic illness has a huge learning curve and there is a lot to get used to. Often times you are faced with the choice of not telling anyone that you are sick, in order to be treated normally, or telling people and then living with the stigma of “being sick”. That’s not an easy decision to make.

Weight-Loss

Weight-loss is a tricky sticky subject. Everyone wants to lose weight until you don’t. And at that point, you really don’t. Heaven forbid that you’re still losing weight though because then all the walls tumble down and open up allowing anyone and everyone to judge you for something.

“You’re actually upset that you’re losing weight?! I’d be grateful!”

“Who complains about losing weight? You’re not even that skinny!”

“You can afford to lose the weight…”

You’re too skinny! Put some weight on!”

“Just eat more!”

“Do you have an eating disorder??”

There is no end to the judgement that pours in when any topic about weight-loss comes up. This is a HUGE reason behind why I’ve let my latest symptom just sort of blow over. In the past few months I’ve lost around 10% of my weight. I was hesitant to say anything because 1) I still weight a normal amount (121lbs), 2) I didn’t want to be accused of an eating disorder (seriously, I’ve been obsessed with eating MORE calories just to counteract any future accusations), and 3) I really really don’t want to hear that I should be grateful or that others are jealous or that I should eat more (Really!? Because I am too STUPID to think “Hey, I’m losing weight…maybe I should eat more! Brilliant!”). 

So completely stupid “eat more” comments aside… it’s horrible that someone can feel scared and vulnerable enough to admit that they are unintentionally losing weight (fully knowing that this is a very weight-loss geared society) and they are told to be grateful. Grateful for what?? Imagine all the possible reasons for losing weight without trying when normally it is so difficult to do. They aren’t pretty thoughts: malabsorption, GI obstruction, organ failure, cancer…etc. The idea that the weight-loss could be due to any one of those reasons is TERRIFYING. And then with any new horrifying thing the question always comes up.. “what will happen to me?” Worst case scenarios run rampant through the mind and they’re hard to tame.

So I’m scared. I have seen others with my disorder go through this sort of thing. I’ve seen how they eventually move to a fully fluid diet. And when that fails I’ve seen them get feeding tubes through the nose or directly into the stomach. And when that fails I’ve seen them go to total parental nutrition. All of this is an extremely rare complication of Ehlers Danlos but it happens. It also happens in mitochondrial disorders or metabolic disorders. Or maybe I won the lottery and have a whole new different possibility to deal with. Or it may be nothing. But a 10% weight-loss is a LOT when I’ve done absolutely nothing to provoke/earn it and haven’t weighed this little for years..