Everything Is Awful And I Am Not Okay: How to Survive A Flare

A note before I begin:
Thank you so much to every single person who has helped me to work through this flare. You know who you are. Thank you for calling, texting, and having patience with me while I was very, very stubborn about taking your help. It is impossible to create a list of suggestions that will apply to everyone who is struggling with chronic illness. I just hope that my words can be helpful to somebody who is reading them. Also, these are in no particular order, and I didn't come up with most of them myself.

1.  Let yourself wallow (but not forever).
It's important to grieve the temporary (or permanent) loss of your health. Noone ever teaches us that we can grieve for things other than the dead, and the grief that you may be feeling in this case is valid and natural and complicated just like all grief is. It's okay to be sad and eat ice cream (or rugelach in my case) in bed and feel sorry for yourself. Some days are just going to be hard, and at the end of the day, you are going to have to just take the loss and crawl into bed with the dignity and health you've got.

2. Be gentle with yourself. 
This is hard, and I am not good at it. This being said, when the world seems to be against us, it is our time to help ourselves. The more situational factors or outside issues that we are experience, the more physical symptoms that we are dealing with, the more we MUST try to be kind to ourselves. This means not pushing ourselves beyond our limits or doing things that make our lives harder just because we want to be seem in a certain way. Use a mobility aid if it will make your life easier. Don't torture yourself over missing a class because your whole body is hurting. Don't make your life harder than it has to be.

3. Try to be grateful for the people who have stayed in your life through the flare instead of focusing on those who haven't.
Going through a flare or a crisis situation of any kind can show you who your true allies are. Some people will be with you at the beginning (at the acute stage), but a few days or weeks later they are nowhere to be found. Some people will come in and out throughout the flare. Some will drop off the face of the earth the first time you talk about a single symptom. But some will be with you every step of the way (sometimes literally when the elevator breaks and you have to walk up 3.5 flights of stairs). And those are the important ones who we must be grateful for. Those are the people who you'll remember in years when you look back at this difficult times. Even though going through a flare can drive many of the people who were previously close to you away, there is a big difference between having one or two people by your side and being alone. You are never completely alone, no matter how much it feels like you are. Try your hardest (and I know how hard it is) to focus on your gratitude for those who have stayed as opposed to focusing on your disappointment and frustration over those who haven't.

4. Do your best to do one thing that you love every day. 
Justifying doing something that seems "stupid" or "silly" is difficult when you are at the point at which normal life is already incredibly difficult. But when our bodies or minds are not cooperating, we have to also remember to take care of our souls because every part of ourselves is connected. This can be getting your favorite drink at the coffee shop on your way to work or school, listening to a favorite podcast, or coloring in a coloring book. I, myself, have found listening to music from when I was in middle school to be very comforting to get my mind off of how my body is feeling even if I can't get up and dance to it like I used to.

5. Check in with yourself. 
I can be in a ton of pain and not notice. I can be starving and not notice. Because I am used to feeling pain most of the time, I tend to ignore it and just push through the day like everything is normal. This doesn't work during a flare because you end up stuck somewhere because you didn't check in with yourself to determine how much energy you had left before you left. I am told that this is a common experience of others who experience chronic illness and chronic pain as well. Checking in with yourself can just involve taking a deep breath and doing a quick body scan to figure out your energy and pain levels. I find it helpful to do this at the beginning and end of each day. Knowing how you are feeling also will help you to determine what you need whether that be medicine, a cup of coffee or a nap.

6. Make a list. 
Make a list of either everything that needs to be done or literally just everything that's in your mind. Somebody suggested this to me at the beginning of my most recent flare, and I hadn't thought about it before. Often the reason that things are overwhelming is because they are all bouncing around in your head with no way to get out, and if you have brain fog like I do, you'll remember one thing that needs to be done, promptly forget it, and then remember another thing that needs to be done and go through exactly the same process with every thing that's bothering you. Writing everything down, whether in a note on your phone or just on a piece of paper, can help you to get your thoughts in order and recognize what you can control and what is just happening. It clears your mind so that you can focus on eating or sleeping or bathing, things that are absolutely necessary to your survival.

7. Take the help that's being offered if it will be helpful. 
This is another one that I happen to be terrible at. For some reason, even though it would definitely make it easier for me to walk, I refuse to let anyone carry my backpack. I don't know why I do this. It's just stupid, so do as I say, not as I do. Some help will not be helpful. The person means well, but they don't know how to help you, and that's okay. But if the help will be helpful to you, please take it. If it will help you to talk to someone, please pick up the phone. If it will help you to have someone come over to help do your laundry, ask them. Don't let your pride get in the way of you getting better. Being vulnerable is the only way that we can form strong relationships with one another at the end of the day. Yes, sometimes if you are vulnerable, you can get hurt, but sometimes, when the right person is sitting across the table from you, vulnerability can truly pay off, and you can get exactly the help that you need.

Thank you for reading, and as usual, I'd love to hear your thoughts or additions.

You Are Not Alone: A Manifesto For Misfit Toys

On the way home for February Break, I found myself listening to soundtrack of Dear Evan Hansen for the first time, and as I listened to two songs in particular, Disappear and You Will Be Found, I finally was able to put into words how I have been feeling for the past couple of weeks.  There are two messages that I took away from these songs--"You are not alone" and "You will be found".

Many people come to me with their problems--I'm not complaining. Helping people is exactly what I do. But so many of those people are afraid that their problems make them seem crazy or that people will run away if they know the truth that is hidden under the mask. But none of us, as unique and scary as our problems are alone. There will always be a friend or someone to remind you that you matter as much as you feel like the darkness is descending upon you.

And so these things I promise to you, and I hope you will promise these thing to one another as well as we bring ourselves together on an island of misfit toys (in no particular order):

1. I promise to not run away if you tell me something. I know you won't believe me the first time I say this, but I will say it over and over for years and years until you begin to get it through your head, that you can't shake me. I will stay no matter how bad it is, even if I don't know how to support you. You can't scare me away.

2. I will answer my phone in the middle of the night because let's be honest, I'm probably not asleep either.

3. I will reassure you that you are not alone as many times that you need and at all hours of the day.

4. I will love you no matter what. We are all broken in different ways. This is not said to minimize your problems because each person's problems are real to them. This is said to remind you that you can't shake me.

5. I will cut you some slack on the bad days. I will tell you that it's okay if you ate two pints of ice cream or skipped class. I will let you use me as a punching bag if it is too much.

6. I will never tell you to calm down or that your feelings are not valid. Those things aren't helpful, and I know how difficult it is to hear them. Sometimes we just think the same things over and over again because our brains aren't rational.

7. I will do my best to make you laugh in the hard moments. After all, laughter is the best way to kill the boggart.

8. I will take care of you if you need me to. In any way. All you have to do is ask, and if I know that you are struggling I will send you a text to check in. I will help to support you or find someone to support you when you cannot stand on your own.

9. I will hold you when you are scared of uncertainty or just to be alive. You can always count on me for a hug even if you don't want to tell me what is going on.

10. I promise that you are safe here. Your vulnerability will not be taken advantage of. I will sit with you through panic attacks or anything else that you are struggling with. I will hold your hand at the doctor's office. I will proofread your emails to your professors.I know the world is a scary place, full of judgement and triggers, but here, on our metaphorical island, you are safe with me and with all of our misfit toys.

Don't Tell Me How To Feel: What Not to Say: Mental Health Edition

"Of course it is happening in your head, Harry, but why on earth should that mean that it is not real?"
-Albus Dumbledore

A few months ago, I wrote a blog post about what not to say to people with chronic illness. You can go read that here if you missed it, but here, I want to talk about mental illness more specifically. Now I'm not a psychologist, but I've been living with mental illness for a quite a few years now, and I have a couple of things to say(and not to say).

1. Don't Say:  "That doesn't make sense; your meeting/presentation will go fine. Don't worry about it"
Anxiety is a green little monster (why green I have no idea) that claws its way around my body especially during times of transition or anticipation. It doesn't matter how many times the logical part of my brain tells the monster that nothing is wrong. I don't need you to tell me that nothing is actually wrong or that I will get my work done because I know that. I am very well aware that I am freaking out over nothing, but that doesn't change the fact that I'm freaking out. Also, I'm going to hazard a guess that the person hat you are talking to knows that even if they don't finish the research paper or embarrass themselves at a meeting, things will turn out okay in the end. The problem is convince the green little monster of that.
Say: "Your feelings are valid. I know that the anticipation is the hardest part."
Anxiety and depression are mean. They are monsters inside of your body, controlling your thoughts, coopting your brain as you try to fight them back with every coping skill that you have. Anxiety also feeds on uncertainty, so the certainty of having a friend/mentor/colleague who is validating is unbelievable helpful. It is positively terrifying to feel as if you are not in control of your own brain; if fact, it makes you feel like you belong in an insane asylum. Recognizing the validity of someone's feelings can make all the difference.

2. Don't Say: "Wow, you really have it all. There's no way you could have depression/anxiety/panic disorder. "
I might be too good at hiding the fact that I struggle with mental illness. So good in fact that a lot of people don't believe me when I talk about, and this may be because I tend to talk about it with a smile on my face, but I AM NOT SUPERWOMAN. Noone is. On the outside, I work very hard, but some of that hard work is fueled by anxiety and insomnia. Everyone including the one with the sparkly eyeshadow and beautiful planner can still be hurting inside. Telling someone that they "have it all" takes away their ability to have a "bad day" and feel okay about staying home from work.
Say: "Great job on that program/presentation. I'm really impressed with how you got so much done."
Complimenting one tangible thing is nice, and it removes the pressure of every part of me having to be "pretty to the public." I can run a great program, and then go home and cry for no reason. Sure, that's not the most pleasant experience, but it's better than feeling like a fraud because everyone thinks that you are perfect.

3. Don't Say: "I don't think I can handle talking to you about this. Are you talking to a professional about this?"
First of all, I know that this one almost always comes from someone who loves me. I assume that it is said out of fear of losing me or whoever you are talking to. These things are scary to talk about, but even scarier to feel. And yes, if the person is a danger to themselves or others, by all means, get them professional help. But, if the person who you were talking to felt alone beforehand (which, spoiler alert, they probably did because mental illness tends to do that), you just made them feel even more isolated. This one especially irks me when it is said by those in caring professions or who have offered to "be there no matter what."
Note: This one can also be communicated in uncomfortable looks or body language. These things are just as bad.
Say: "I don't know how to be most helpful in this situation. What would be best for you?"
Professional help is important, for me as well as many people who struggle with mental illness; non-professional help or help in a different context is also super important because it makes me feel like you care. Having these kinds of people in my life is what has kept me here. They are the ones who were shoulders for me to cry on or sounding boards at the end of a crappy day.

It's okay to not know what to do. It's just not okay to make me, or anyone else who is struggling feel more alone. So ask. It's as simple as that. Maybe all the person needs is a cup of coffee or a hug, or someone to sit there and tell them that they made it this far and they should be proud of themselves.

4. Don't Say: "That happened weeks ago. Why are you still thinking about it?"
Have you ever tried to control your thoughts? It's freaking hard, and if I could, I would. Now imagine doing so with little monsters running around trying to make you think about all of your mistakes or losses or problems that happened in the past. Pain is pain. It takes time, and you can never know what underlying issues the person has that are affecting how they are feeling. There is no timer on feelings--although oh my goodness, that would be amazing.
Say: "I know it still hurts. I'm here for you with whatever you need."
It hurts because it mattered. I can't change how I feel about whatever happened. It still hurts. The validation of my feelings is really helpful in and of itself. Additionally, some mental illness characterizes itself with repetitive thinking patterns, so I will have the same thoughts over and over again against my will, no matter how hard I try to stop them.

Thank you so much for reading. Please leave your thoughts in the comments below.