Illness Isn’t A Crutch: Why It’s So Hard For Health People To Learn Illness Isn’t An Excuse

April 28, 2017

“Why are you bailing again last minute?”

“Are you sure you’re gonna come, or are you gonna flake last minute?”

“What’s up? You’ve been MIA for days?”

If you ask any teen or young adult with chronic illness, they can probably share hundreds or more quotes like this. Hundreds of times when they have had to put their health first and change or cancel plans with friends or family. Countless times when they’re suddenly dropped out of a group text, or given the generic “I’m busy” response without warning or a true explanation.

But what I’ve learned from my own health struggles, and I’ve learned from our youth supporters, is the guilt, stress, and anxiety that comes from the feeling your peers equate your illness as making excuses. We can wait anxiously to see if our friends understand why we may “disappear” or believe it’s just another excuse.

What we need to address here is the basic fact for our healthy circle of friends: illness is not a crutch (metaphorically speaking, because sometimes it’s needed literally) and it is not used as an excuse.   

Does that friend of yours with an illness want to cancel on plans? Not really!

Does that youth desire to be so misunderstood when it’s simply their health? Absolutely not!

So the true goal here is to lay out the truth. To give the basics of really understanding that illness is not a “hall pass” to get out of events or be distant, illness is simply that…illness. It is confusing, and unpredictable, and can take over life in the blink of an eye.  And we need to empower the youth with chronic illness to be confident in the fact that they might not always do the “popular” thing, but they are always doing what’s right. Yet again, sometimes what makes the most sense, is often forgotten in our daily practices, so we need a bit of a reminder.

Reminder #1: Most chronic illnesses don’t have a schedule

While PT sessions, doctor’s appointments, and medication treatments all fall into a schedule, the nitty gritty of having an illness each day definitely does not. You cannot plan when you’ll have a flare-up, side effect or an episode…it just happens.  It’s the main explanation for why many of your friends living with chronic illness have to bail out last minute.  I remember times when I was getting ready to hang out with friends and suddenly my RSD symptoms would spike, and I had no energy to move without excruciating pain, so I would cancel last minute.  It was a sudden change in my plans because of the sudden change in my health.

These moments when illness and injury take over are never planned, they are spontaneous, and in reality, it is not what any young person wants to happen in that moment, or ever!  Youth still want to be teenagers, and young adults, hanging out with friends, going out, and living life to that ‘normal social standard.’ But when you add illness into the mix, you have to become comfortable with the notion that your schedule is often dictated by your illness, not your desire.  And that’s not only a reality that our spoonies need to understand, but there friends and family as well.  Our inner circle, need to be aware of this fact. This allows them to gain an insight into our world and to better understand that when you don’t show up, your illness is a valid reason, and never an excuse. There is no way to say “your using your illness as an excuse” because newsflash, if you have to bail out on friends because you’re not feeling well, that’s as valid of a reason as you can have.

Quick Tip: Come up with your own weekly calendar and map out your PT, your medications, your doctor visits. This way, you can see when your body might be too exhausted, or your certain treatments might take too long/have side effects, and that allows you to plan ahead with friends.  Now, this isn’t fool proof, we cannot see the future, but it give you that ‘educated guess’ on whether or not you’ll genuinely be able to get out with your friends.

Reminder #2: It’s just as annoying to spoonies to have to pull the “health card” as it is to hear it

What people need to understand is frustration is felt on both sides of what I call “pulling the health card.” Yes, I can understand where friends come from when they get annoyed that you might keep bailing out, or you completely ghost temporarily.  It is frustrating that you make plans and suddenly a friend keeps pulling out, saying something happened or you’re not feeling well.  You begin to assume that your friend just doesn’t want to hang out with you and wonder if every time they say it’s a health problem, if that’s true for each case. And the only reason I know this is because when I was a teen living with RSD in its prime, I didn’t have any friends that dealt with illness. A party of one in the spoonie community! I was forced to be around all healthy youth and find my way to get this community to not just adapt to my new normal, but to better understand why I felt their ignorance to my illness.

But what many healthy friends do not understand is that the frustration is equally felt on your spoonie friends, even more so to be completely honest.  It is annoying to be stuck in a body or mind that does not function at 100% all the time and hinders you from doing everything you want. It is agonizing to know that when your illness completely builds into a ‘bad day’ you need to change your plans in order get through the hours you have left. Most teens and young adults with chronic illnesses do not want cancel plans, they don’t want this to change, but they need to do what is best for your health. This is not a one-sided annoyance, because really think about it: would you want to be getting ready to go out, and suddenly your illness symptoms spike, or you’re exhausted with fatigue, or you have bad reaction to medications/treatments…and then you have to send that text that you’re not able to hang any longer?  The main answer is absolutely not! If you put the shoe on the other foot, your friends will realize that you need the blatant understanding, because it’s frustrating to all involved.

Quick Tip: Try to be the host of your friend hangouts.  It’s a simple fix, really because this lets you be in complete control.  You get to choose the activities and your extremely comfy clothes. You would be able to have every one of your medical needs at the ready for you, whether it’s IV treatments, medications, heating pads, ice packs, bandages and wraps and more.  With friends that would want to learn more about your illness, or want to be as open or understanding as possible, they would be able to adapt your hangouts to your needs.

Reminder #3: Sometimes generic replies are easier than explaining the reality, so accept them

Let’s be real, many teen spoonies don’t really want to share all the little details of their illness with their friends. And especially if they feel self-conscious about their illness and the way their friends perceive it, they will not want to give up the true details.  If you feel your friends are going to judge the truth of your illness, or think you’re making up an excuse, you begin to hide their realities of your illness.  Why share and be judged, when you can just deal with the backlash of bailing or going MIA? I’ve had youth tell us that they would even send photos of themselves to their friends just as proof that their illness has changed their plans…and that should not be the case! No youth should feel they need to justify their illness and prove their reasoning for canceling plans!

That is why so many times, youth with chronic illness decide to just send these generic, nonspecific replies when they need to cancel plans.  It can be so much easier to just say “something came up” one time, than say “family plans last minute” another time, and then finally explaining the real medical reasons on other occasions.  The nonspecific texts are not meant to be rude or not descriptive, but rather a way to protect a very personal health struggle. And it does help to truly avoid that inner feeling that youth with illness can feel about some of their friends believing their illness is being used as an excuse.

So…at the end of all of this, what’s the takeaway?  What’s the moral of this story? Friends and family: remember that we cannot control when our health takes a front seat in our day. When we sometimes back out, or disappear with our generic explanations, it’s because we really don’t want to pull out the health card or have to explain every detail.  And spoonies: remember to be honest with what you need, and know that sometimes, while it’s not always what we want, you have to do what’s best for your health.  You need to find that inner confidence in understanding that there will be moments when friends will feel like outsiders in your life, just like you may feel external to your social life.  And this is okay!  It’s all about being confident in the ride of your social life, in the peaks and falls of participation as I like to call it.

The moral of this story: ILLNESS IS NOT EQUIVALENT TO AN EXCUSE, IT’S A REASON FOR ACTIONS, AND THIS STEREOTYPE NEEDS TO CHANGE.

It’s alright to be the completely involved friend, and sometimes drop the ball…the point is that your friends and family support your health journey unconditionally and allow you to pick up that ball whenever you’re ready.

~Dominique

New Year, Same Health and Same Work: Finding the Always-Changing Balance of a Work Life and Illness Life

February 8, 2017

As everyone seems to be trying to stay true to their New Year Resolutions, some were daring and used a pen, others are like me and preferred to make sure their new hopes and goals could change with the ease of an eraser. Recently, I’ve been hearing from a lot of you wanting to know about the tips and tricks I’ve learned over my spoonie years to get off on the right foot in 2017 and balance my two competing lives: my work life and my illness life. And especially since my latest flare-up of a RSD episode after my injury a few months ago, I’ve had to delve back into this balancing act a lot more. I’m like every one of our youth, working hard to find the ways I can still work while not hurting myself. As I tell each medical group I speak to: “Find the ways to compromise the treatment plans without compromising your patient’s health.”

Continue reading New Year, Same Health and Same Work: Finding the Always-Changing Balance of a Work Life and Illness Life

Spotlight Story Program: Rachel’s Story

Meet Rachel Necky

As a rockstar athlete, teen Rachel Necky was ruling her life as an ice hockey player, but one injury would change her life direction. Dealing with the neurovascular condition called CRPS, Complex Regional Pain Syndrome, Rachel had to dig deep, find even more strength, and use her dedicated athlete mentality to fight back against her condition and realize that she could push herself and conquer all.

My name is Rachel Necky and this is my story: When I was little, I always noticed that simple things such as someone poking my arm and tickling me caused me pain. I didn’t understand it and didn’t really think much into it. In 2012, I fractured my fibula playing kickball in gym class. I went to the first orthopedist I could get an appointment with. They initially gave me a walking boot.

Unfortunately, that didn’t help because it was pushing on a very sensitive spot on the side of my leg–I call it my soft spot.

So, the doctor decided to take it off before I was fully healed, and they didn’t have me go to physical therapy. Once the boot was off, I started having very extreme, intense pain on my soft spot. The pain progressed and bounced over to the same spot on my other leg and continued switching back and forth. I went to another orthopedist and they told me I had shin splints.

The pain began to spread until it covered every inch of my body.

Continue reading Spotlight Story Program: Rachel’s Story