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

Spotlight Story Program: Katy’s Story

Meet Katy Baker

Since before she can remember, Katy has been part of the healthcare system dealing with a congenital heart defect called Scimitar Syndrome. But what has defined her medical life has not defined Katy’s personal life.  She’s a university student, on a competitive trampoline team, and rare disease activist that’s using her voice to make a positive difference.

At 3 months old, I was diagnosed with Scimitar Syndrome, a congenital heart defect which also means I only have one functioning lung.

Since then, I have had lots of tests, consultations and been under the care of different hospitals all which I continue to go all through this today.

As I became a young adult in the hospital system, I have now moved to a different hospital, had a new consultant and had more emergency hospital visits which meant needing more tests and observations.

I first moved to a different hospital when I transitioned from pediatric to adult hospital services. I had to get used to knowing my way round a new hospital, the new tests I had to do and get to know my new doctors. And my health still correlated with my life as a young person. 

When I moved to University, this meant signing up to a new general physician surgery where they did not know what my condition was, and even experience going to the emergency room in a hospital I did not know.

From my perspective, being a child or teen in pediatric medical care means that you normally have the same hospital consultant over the period of about 16 or 17 years, or whenever you transition to adult services.

In pediatrics, you are used to the same environment and over time you feel settled, not because you’re in a hospital but because it’s somewhere you’ve got to know and somewhere you know you’re going to be cared for. Being a teen in pediatric medical care is unique because you still have the support from your family and there is no pressure when it comes to whether they are there for your appointments or not. Teenagers who are chronically ill often have to grow up more quickly to understand everything that is going on but they are still children and still need support from others.

Being a teen patient to me is different than being a child patient or an adult patient because as a teenager, you are exposed to a lot more in your life but at the same time, you are going through some other transitions which teenagers can often find difficult.

However, when you’re a child, you are often more dependent on your family and they might not be aware what is going on which in a way is an advantage because as a teenager, you often have more awareness of what you are going through and your illness which can be really difficult not only for your physical but also mental health.

Having to be in hospital as a teenager can be really difficult because of everything else you are going through at the same time in your life outside of your health. But I think that one of the most important things to do is ask for support when you need. Whether the support is a family member, a friend or someone else, having support while in hospital or with a chronic illness can often be useful.

I think teenagers in hospital would benefit from introductions and more information earlier about the transition process into adult health services. Young people often move to adult services when they are from between 14-18 years old and so new environments can seem quite overwhelming. Therefore, introductions and information about the adult services should be in place.

Dealing with my health has been really challenging, however there have also been some benefits because it has shaped me in to who I am today. I created a film last year with a charity about how my condition does not stop me from being part of my University’s trampolining team. Since then, I was in two newspapers, on a local radio station and now being given lots of opportunities to spread my story. I was even invited to speak at a Rare Disease Day event this year, which was such a great experience.

I am also really excited to participate in the Superhero Series disability adaptive sport event this August in England as part of InvisiYouth’s Charity Friends team to show that people with disabilities or illnesses can still achieve like everyone else.

Dealing with my health has taught me to not take life for granted and to take every opportunity that comes my way. 

In the future, I want to complete my Childhood and Youth degree, do a master’s degree and have a career working with children and young people in a hospital.

For me, it’s as if my life will be going full circle from my personal experiences and professional future.