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Teen Spoonies This One's for You

     I first got sick at 12. I fought it and mostly won until I was 17 and I had to take a medical leave of absence from high school (for two years). That's when I became really sick, or professionally sick, for about three years.
This is me at 17

There's a few things I want to tell you guys, having been both functionally and non-functionally chronically ill throughout the entirety of my teens.

I know it's scary as hell. 

It's hard not knowing what is happening to your body or not being in control of it. You don't know what to tell your friends when they ask you what's going on and why you're missing school. You keep going to the doctor and having all these tests done, but you aren't getting any answers.

Especially when, like me, you have a complicated diagnosis or co-morbidities. I have been diagnosed with IBS, GERDS, migraines, CFS, POTS, allergies and asthma, Lyme with viral and plasmodial co-infections, fibromyalgia, and EDS.

Finding answers and diagnoses does help, but it doesn't solve everything. 

A diagnosis helps to outline your problem but, again, with a diagnosis like the ones I have, doctors, friends, employers, professors, etc. are most likely not going to understand what you need or what your life is like if you just tell them the name of your disease. There is little awareness and that carries it's own burdens. You may also find that answering one question opens up a bunch of new questions, like how do I treat this illness? Who is the right doctor for me? How do I balance managing my illness and living a "normal" life? How do I balance my illness and school work? 

I am not trying to stress you out more.  It's just that I know when you have no answers it's easy to think that when you finally get an answer you'll finally be ok.  Don't wait for anything to start being okay.  You have to start to learn how to be okay when you're not really okay.  Learn to live in the uncomfortable.  Try to be happy with your life and find joy even when it feels that everything is crumbling around you and you will never get it back.


If you aren't already, fight for your rights. I have learned this one the hard way over and over and over. I share this with you out of love. Please, when a doctor is speaking over you, look them in the eye, and say "excuse me." You don't have to be rude, but be assertive. When tired and in pain even the most assertive of us have trouble speaking up. I personally have found that I have to advocate for my needs with doctors, friends, educators, my parents, and random people like hotel employees or waiters. Many of you may already be great at this especially if you've had your chronic illness for a long time, but I always had trouble doing anything that I viewed as disrespecting an elder. This led me to accept mistreatment from people older than me simply because of their age. Please don't do this!

Now I find my hardest area of self-advocacy is with my parents. I'm either too tired to argue with them, or I need their help so much that I am scared to upset them or disagree with them. It makes me feel trapped and dependent. When I was a teen my health was still in the crisis stage. I couldn't bear to think about the future at all, because I wasn't sure if I'd have a future worth living in. I took everything moment to moment to preserve my sanity. If that is what you have to do that is ok.

Now I understand more that even if my illness doesn't get better or even if it gets worse, I can still make a life that I want to live. I see now how I can manage my illness and how I am in control of my own life choices regardless of my illness. Getting my parents to accept that I may never get better is much harder. And I don't feel free to make all of the decisions I want to or to be as independent as I'd like, because I am so reliant upon their help physically and financially. My advice would be to start having those hard conversations about how they can support you in achieving your goals both while you are healing and in case you never recover to their expectations.

Don't hesitate to let a professor know that you require certain accommodations to be able to take a class.

 I've never liked to get "special treatment" or "make a fuss" and because of that I have put myself in positions of having to drop courses when I easily could have asked for more help or accommodations. I was scared to speak to my professors about my disability for a long time. I still get anxious every time I have to email a professor about missing a lecture due to my illness. I'm always afraid they will think I am faking or trying to get away with being a bad student or something like that. I just don't want them to judge me the way everyone else always has, or say more nasty things to me than I've already heard, but honestly the more confident and forceful you are the easier it is. If you go into these meetings meek and afraid they step all over you, but if you go in politely but firmly stating your needs, they are promptly met. That's been my experience.

Don't be too embarrassed to use a wheelchair (or other medical device) 

I was afraid people would think I was faking or just trying to draw attention to myself. I'm embarrassed now to admit this one, but I guess abled society has its hold on everyone and I didn't want people to look at me. I didn't want to be different. I didn't want to admit that I was sick and I didn't want anyone to see me as weak or to pity me in any way. Of course being in a wheelchair doesn't make you weak, but having been in one I know the way people treat you. Having said that, using it more often has been a growing experience for me. I conquered that fear of how others were going to view me and I was able to see the world through a new perspective. It's given me more compassion and empathy for people with more visible disabilities and some of the B.S. they go through. So, do what works for you no matter what anyone else says, and speak up!

I'm proud of you. 

 Seriously. Scrolling through my Instagram feed, I see so many of you sharing your stories. When I was a teen, I was too scared and self-conscious to post about being sick on social media very much. Granted, social media was different then, and my friends were the opposite of supportive. Being sick is something I've always felt that I have to hide in order to interact with other people. I think you're brave. And, I want to thank you for showing me that I can be fully myself, illness and all, and still be accepted by the world.

 It doesn't always get easier.

You don't always get "better" because that's what having a chronic illness means, but you do get stronger.  You also learn a lot of life lessons and coping mechanisms that people your age miss out on.   I promise that in ten years you will look back and be amazed at how strong and resilient you've become. This life will not be easy but it will teach you lessons worth learning.  I find myself able to handle stressful situations with ease while the people around me fall to pieces.  I'm sure you've learned not to sweat the small stuff.

Be kind to yourself. 

You aren't perfect.  That is okay.   If you get sick after pushing yourself too much or forgetting to take a pill, make a note of it.  What you shouldn't do is beat yourself up over every decision. You will get sick.  It is not your fault. You have to find balance between protecting your health and protecting your sanity.

Sure, going to dinner with your friends might make you sick tomorrow but you do need social contact. Do not let yourself feel guilty or at fault for every flare you experience. This is your life and your journey, only you can discover the right balance for your body and your needs. Chocolate, pets, nights out, junk food, wind in your hair, sand in your toes, you have to have some of it in your life. Love yourself and find happiness where you are, but accept that you are not always going to be happy and that's ok too. You are allowed to be angry, mad, bitter, resentful, and everything else. Just don't stay in those dark places longer than you need.

You can do this and you will. And guess what? You got me on your team now!

Sending you Healing Hugs and Hope



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