Excuses or Reasons?

“You’re just making excuses”

This was something I heard about myself again, recently. It’s incredibly painful to hear such things. Nobody chooses this, nobody wants to experience life with a debilitating, rare, chronic disease. As weeks become months and months become years, we begin to find our footing – sort of. But who has patience for such things? Lots of people are sick with chronic illnesses and they still get up, go to work, have fulfilling social and family lives.

So why can’t you?

I have a little perspective with this. As a teenager, I was diagnosed with endometriosis, and in my early 20’s they found out I also had polycystic ovarian syndrome, or PCOS. These conditions were very difficult, initially, coping with pain and finding a way to regulate my hormones was no easy thing – but, it didn’t stop me from being an active individual. I could still ski, mountain bike, work, rollerblade, hike, workout, train martial arts and practice yoga… yeah, I was a highly active and energetic individual.

Of course there were times that I needed surgery or the pain was significant. I suffered nerve damage after having adhesions removed from my uterine tendon, but I found and excellent pain doctor, who found that nerve and after a few rounds of a nerve ablation, it was no longer a problem. I needed to eat well, healthy, not use plastics; etc.

It honestly barely slowed me down. Even if I was grumpy from pain or frustrated I had to take time off from training martial arts or a couple weeks of activities, it was hardly noticeable. That’s called, “manageable”

So what is the difference?

When you think of rare, what comes to mind? In medical terms, it’s a, “zebra” or “unicorn”, in life, its generally something unusual, unique, almost unheard of. In life, this can be incredibly exciting, a thrill, an unkown with an experience that can mark or change us forever! Somthing that few have experienced and you carry that thrill the rest of your life, its wonderful, positive… sometimes a lesson learned, but usually an experience worth having.

Medically… you don’t want rare. Rare means misunderstood, it means every time you roll into the emergency department, you have to explain in detail to some, general physician, your complex disease and drugs that most general physicians have never heard of… lemme just go on record, it’s not fun telling your doctor how to spell your disease and waiting for the medical assistant to google your disease. It’s disconcerting and terrifying. You hand them your list of medications, allergies, conditions, treatments, specialists and usually, it makes NO DIFFERENCE. The more rare the disease, the more rare the specialist who can treat the disease.

Simultaneously, whilst trying to tell the emergency room medical team about your illness/s, you’re fighting pain, brain fog, fatigue, and whatever set of symptoms forced you to go to the ER in the first place. No problem, right? I’ve had an emergency cesarean, and I’d take that experience any day of the week, over the problematic visits to the ER.

All the reasons…

In the early stages of this chaos, nobody knows what you have, what you’re dealing with. You begin to seek out specialists, and here in the Bay Area, that can be immense… we have many medical institutions here, Stanford, UCSF, John Muir, and lots of private practice specialists, (most of these specialists won’t accept a Covered California plan, or ACA), this can be both good and bad. The really good specialists can take up to 6 months to get into, or you can simply luck out. Although, contrairly walk into a highly reknowned facility that looks like a 5 star hotel and get an, “hourly motel”, treatment. The point is, it can take a while to find someone who can actually help you.

In my personal experience, I finally found someone who discovered the immense, deep tissue eosinophils in my entire GI tract, (the worst being in my colon). Despite this discovery, they had very little understanding in how to treat this disease. So naturally, I was shamed. My first experience in being told I was making excuses, came from doctors who didn’t understand the disease they just diagnosed me with.

… FUN TIMES …

Then come the experiments, side effects and bizarre outcomes. You’re a living science experiment, not unlike what you see in the tv series, “House”, only its not a few days or week, with a team of doctors who are determined to find the cause, or the compassionate doctors in any other medical drama on tv. No, this goes on for months, years.

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It takes over your life, your world

Unmanageable, complex, rare disease, is a different situation when it comes to navigating life. Chronic inflammation will absolutely affect your brain, which I only recently learned, was due to cytokines being released throughout your entire system and so begins the abnormal behavior. Add to this, all the, “experiments”, the steroids, the side effects. You learn that something that can sound so innocent, like an antihistamine, can turn you into a rage monster. You learn that you do crazy things, say crazy things on steroids, especially if administered during anaphylaxis… You’re in a swirl of opioid medications, antigen therapy which may or may not be helping your illness/s and you won’t know until biopsies are done, after the trial of the intense drugs ~ so… consequently, the behavior is affected.

Then you find out about the cytokines, the inflamed brain tissue, the cause for your altered behavior, and you try to explain why you’ve been behaving in a manner which was, NEVER WHO YOU WERE BEFORE GETTING SICK. Then you hear, “that’s just an excuse”, or, “that’s no excuse”. You can even provide articles, scientific articles that explain the cycle and the effects, and you’ll still hear, “that’s just an excuse”. You want to find a way for us to feel sorry for you an excuse your behavior.

HEAVY SIGH

The only thing I can tell you is this… what you’re experiencing is REAL, you may or may not get that validation from your friends and family, but you will from your sick community, wherever you’ve found them. Maybe it’s this article, social media, a therapist or caregiver. Sometimes trying to explain to the healthy does more damage than good, because they’re determined to make us feel horrible about ourselves, to feel less than… As if we needed that, ever hear of adding insult to injury? Compassion is clearly not their strong suit, and it’s a personal choice if you think that friendship or relationship is worth it, or if it’s damaging to you.

No longer the active, social, fun, energetic and working person you once were, you’re clearly looking for an excuse to dress in loungewear and slippers and watch tv all day ~ in pain or whatever hell symptoms you’re experiencing. Oh yeah… so much better than being active and productive… again with the heavy sigh…

The silver lining in all of this is that we can choose if it’s worth staying with the people who are kicking you when you’re down, despite all the things you’re doing to advocate for yourself. All the research and experiences gives us knew knowledge, more compassion and a deeper understanding. We know the REASONS, even if, “they”, think they’re excuses. It’s now time to believe in yourself, in your heart, and finding a compassionate community who will accept you as you are, right now. Nothing is as important as accepting yourself, and once you do this, you are free to love yourself, disease and all, and know that there are compassionate, kind souls out there, who won’t judge you, who will listen, but the first move is yours.

Accepting yourself as you navigate the intense waters of unmanageable or rare disease is something that is powerful beyond measure, and it emboldens others to find acceptance within themselves as well. We know the reality, we learn the science and we learn to be better in these complex situations. In the immortal words of Michelle Obama,

“When they go low, we go high”

We are sick, we’re not dead. We are literally in the fight of our lives. Dear warriors, I hope you will find peace and meaning in this chaos. It’s not easy and most of us are going it alone, but there’s a certain dignity in that, and even if we don’t have the energy to do much, we can still be that phoenix, rising from the ashes, and we will find a better situation! Until then, know that there are reasons not excuses for what you’re experiencing. After 5+ years of intense illness, I now know to not talk to most people, if I’m experiencing a flare, that way I can’t be accused of being a jerk. Sometimes I won’t respond to a message, other times I’ll say, “bad flare, can’t talk”. However you chose to manage this, make sure you’re making decisons based on who is safe, caring and compassionate, and those who will cruely misjudge you.

Stay strong fellow warriors!