The Things People Don’t Tell You About Remission

Recently, I had a long and meaningful phone conversation with my only friend in remission.

She and I have very paralleled health journeys, having our lowest points around the same time, almost dying around the same time, and we ended up in remission around the same time too.

We’ve bonded a lot over our paralleled health stories, but especially over our paralleled remission journeys. 

One day we had this long phone call just comparing notes, comparing things we both went through, and one topic I loved and wanted to turn into something to share was the topic of, “The things people don’t tell you about remission.”

She and I both were very much so “lone wolves” in our health struggles and had no real reference point of what our futures (and health especially) would look like. Honestly, we both had come to terms with death as a very realistic option because with how sick we got neither of us really expected to live to see where we are now. Through stubborn perseverance we are both alive and well, but since we had no reference points for what to expect in health, we had no idea what to expect for “remission” either.

Thus…

The Things People Don’t Tell You About Remission

🌸Remission doesn’t instantly mean that you’re 100% better and back to a totally normal “Old you”,“old life.”

🌸Remission (and healing) is a gradual process. You will have to continue to be patient, forgiving, and extra compassionate to yourself, and on top of it all you will still need to work daily on continuing and up-keeping your health. 

🌸There are still a hell of a lot of good days and bad days, but they become less extreme, the bad days start to lessen, and the good days gradually get better. Shit will still hit the fan from time to time, but it won’t be as bad, or nearly as frequent, and you gradually will learn to cope better and better with it.

🌸The good days feel even better than you can imagine, and you will happy cry a lot.

🌸The bad days will likely trigger your past scars a lot more than you’d expect. 

🌸Health flares do still happen, for a lot longer than you’d probably expect. Don’t panic, it doesn’t  necessarily mean you’re relapsing and need to jump back into fight or flight responses. It could be hormones, it could be stress, it could be the moon, it could be a cold, it could be that you ate some food you shouldn’t have. Chill, give it a few days, and see how you do. Healthy people function by the rule of ,“Wait a week or two and see if it worsens, contact your doctor if it does.” This is you now. Learn it. Live it. Love it. 

🌸Some days you’re going to cry like the world is ending and you don’t even know why.

🌸Some days you’re going to still feel stuck, “less than”, or frustrated in the pace that things are going. 

🌸Some days you’re going to wonder if it all was a bad dream. 

🌸Some moments you’re going to completely forget about the past. 

🌸It will all feel a bit odd and twilight-zone-y, like your own personal parallel universes are colliding. 

🌸You will fit in even less now. When you were healthy you had that, when you were sick you found your sick friends, but now that you’re in remission there’s much fewer people in this phase, and even fewer who are in the same place as you right now. This is probably the least you will ever fit in because you don’t really fit on either side of those lines now. Embrace being different. Just be you. 

🌸It will be a bit odd to have your sick friend life and your healthy friend life and have yourself be somewhere bouncing back and forth in-between, juggling two different identities. I hope you choose your new, healthier identity, but that doesn’t mean you have to cut ties with any friends, not if you don’t want to, not if they still bring you joy. 

🌸If you’re lucky you will find someone who’s at the same stage of remission as you and you’ll at least have them to talk and fully relate to, but everyone else… doesn’t really get it. 

🌸You will naturally have expectations of what remission will look and feel like, and I promise you it will end up being different than that. That’s not a good or bad thing either, it’s just how life goes. 

🌸There will be things you’ll expect to want to do once in remission, but when you finally get there you may not have any interest, or it may not fit or be as fun as you thought. Don’t hover too long on that and shift your attention back towards things you do enjoy, and things you do want to do. You deserve some self indulgence. Follow your joy. Follow the things that make you excited about life again. 

🌸Re-entering life can be incredibly daunting, triggering, and even scary. Push past the fear, worry, anxieties, doubts and all of that crap. 

🌸You most likely will have some level of PTSD. It’s time to learn more about PTSD and healing, and then take advantage of resources to help you move forward. Reading self help books or seeking out a therapist are great options. 

🌸Get out of your own head, and in fact, just getting out in general would be good for you. 

🌸You can still overdo it and set yourself back because you’re still healing. You don’t have to over-stress and overthink this, just respect your limits when they do start to arise. Listen to your body. 

🌸As you move forwards in your healing, all of your limits and boundaries will constantly be in flux, constantly shifting, and hopefully in a healthy direction. It can feel frustrating to not have consistency in these areas, but try to hold onto gratitude because you are moving forwards! Remember when you got sick and all of your limits and boundaries shifted backwards for a long time? Now you’re doing that in reverse and the forward movement is a wonderful thing!

🌸Some things will emotionally feel more raw because now you finally have the energy to actually feel! (pros and cons to that lol) You’ve greatly healed your body, and now your body will allow in more emotions, which means you have work to do in healing your emotions and mind. Again, friends, self help books, and therapy are great options. 

🌸Time will help your wounds, but it won’t completely erase the scars, and the memory of the pain that caused them. It’s a normal part of human existence to have this happen. We all have our scars.

🌸Try to remind yourself of what things are a normal part of human existence. Everyone has bad days, everyone gets random little illnesses, everyone cries and has emotional outbursts, everyone overdoes it sometimes, everyone has those days where they overthink their existence and don’t feel good enough, everyone has a sleepless night every once in a while, etc, etc etc. Before you panic, before you spiral out of control, remember what things are just a part of being human. 

Let's Talk More About Remission

In short, remission is not easy, it’s not all sunshine and rainbows, and it’s surely not what I expected. 

I think there’s a lack of people honestly sharing about remission because they’re either trying very hard to “fit in and just be normal” and/or they’re underwhelmed and don’t want to discourage others or kill their hope. But since no one’s honestly sharing about the ups and downs it leaves everyone in remission feeling alone, and probably a bit panic-y too. 

I realized in talking with my remission buddy, and through our countless conversations comparing remission and seeking validation to know we aren’t alone in this odd limbo space in our lives, that this is something I need to talk more about. I realize I’ve focused so much on trying to give people hope that they can make it into remission that I forgot to give attention to what remission actually looks and feels like. Granted, remission will be different for everyone, but hopefully in sharing more about it I can cover at least some of the bases. 

The last thing I want is for someone who’s sick to feel like, “I have nothing to look froward to. It’s still going to be hard. Why keep trying?” I’ve had my share of days where I feel that way, but most days I’m incredibly grateful for my ever-improving quality of health and life. I’m always grateful that I didn’t give up. Remission is hard sometimes, life is hard sometimes, but it’s all absolutely worth it. 

In sharing more about remission I simply want to look out for and speak up for all my fellow remission buddies out there in the world. Hopefully it won’t discourage those who are still searching for healing, but it will give them a more realistic idea of what it feels like to actually enter remission. I had no real guidelines for what to expect in my health journey, I didn’t have someone to look up to or look to for guidance or validation, and there have been countless times that I really could’ve benefited from that. I don’t expect everyone to relate to my journey, but I know someone out there will and whoever that person is, this is for you. 

Valentine's Day And Dating Are 10x Hard For The Chronically Ill

With Valentine’s Day right around the corner I’ve been thinking a lot about relationships and especially the difficulties of dating while being chronically ill. In my experience, being chronically ill makes dating, or really any kind of relationship, 10 times harder.  

It’s hard to plan dates when I don’t know how I’ll feel tomorrow. It’s hard to go on dates when I’m tired or hurting or struggling with anxiety. It’s hard to get and give gifts when I’m home bound and exhausted to the bone. It’s hard to fully be there for another person while I’m focusing on trying to save my own life and just survive through the day.  

Attempting to date while being chronically ill was a nightmare for me. Since I was home bound, online dating was my only option for a long time, and it did not work out for me at all. Usually, once I told a person I was sick they would give a quick, “That’s crazy. I’m so sorry.” Then shortly after that they would “ghost” and stop replying.  

If I had a dollar for every time someone has done that to me I would be one rich "sick-chick."  

Eventually, every once in a blue moon, I started going out with friends and one time I unknowingly was set up on a blind-date! Thankfully, that went very well. 3 and a half years later, we’re still together and so very happy. I'm extremely lucky to have ended up with a person who loves and supports me unconditionally. 

Although I am in remission and a solid 80% healthy, my life and health can still be unpredictable, and I continue to face many of the same frustrations about wishing I could give more.  

As a perfectionist, I want to give 110%, but I’m only at 80% and need a lot of those "spoons" just for myself and continuing to heal! 

6+ years of chronic illness and 1/3 of my life, and I’m still working on finding peace with accepting “just doing my best IS enough.” 


With all of this, I really just wanted to say a few things to a few people… 

To anyone out there who is chronically ill and struggling with dating, or struggling with feeling like they’re falling short in their relationship. I’ve been there and I know how you feel. With time it will get better. I promise. Just keep doing your best and surrounding yourself with people who make you feel like you ARE enough, exactly as you are, no matter if you’re having a good or bad day.  

To the people out there who are dating someone chronically ill and you do make them feel loved and accepted and appreciated for exactly who they are. Bless you and your beautiful soul. You are a gem, a true diamond in the rough, and you are so deeply appreciated. Thank you for giving unconditional love. 

To the people who “can’t handle” dating someone who’s chronically ill (or struggling with an invisible illness.) If you leave them, all I ask is that you do it in a way that they know they should never feel guilty, worthless, ashamed, or like they aren’t enough. Us chronically ill folks have so many people leave us in utterly heartbreaking ways. Please don’t be another one of those people. 

It may be uncomfortable to have a real conversation before leaving them, it may be much easier to “ghost”, and you may think it’s best for both of you if you just disappear. But you have no idea the amount of scars that will leave on them. Please remember you can leave someone’s life in a positive and kind way. Give them the compassionate closure they deserve and are rarely given. 

To the people who have been left without any closure. I feel your pain. I know these scars all too well. Please be patient with your healing and never doubt your worth. You are loved, you deserve love, and you will find love. Don't let cruel people ruin the hopes you have for love. Have hope that healing is possible and that someday you will find “your people” who love you just as you are.  

To any chronically ill people out there who don't have a Valentine this year. Hi, I’ll be your Valentine. You ARE enough. You are beautiful. You are strong. You are a warrior, and a survivor who is incredible for continuing to fight and so worthy of love. I’m proud of you. I see you. I appreciate you. You will forever have my love and respect. 

Happy Valentine’s Day,  

Love Savannah💌

Dear Ex Best Friend Who Left Me When I Became Chronically Ill

They say, in life, on average we have a whole new set of friends every 7 years. If you’re lucky, you may surpass that average and have friends that literally last a lifetime. Or if you’re like me and aren’t so lucky, life may throw you some unexpected curve-balls that people in your life just can’t handle, and you may lose friends at a much more rapid pace than “the average person.”

I got sick when I was 14 and I lost every single person in my life that wasn’t blood related to me. 

I’ve lost more friends in my life than I can begin to try and count, and it took me time to fully accept that losing all of those friends was not my fault, and I didn’t do anything wrong. I simply got sick, and people couldn’t handle how serious and scary my life got, so they left. 

I don’t really blame them for leaving either because I’ve deeply struggled with handling my illness too. I wouldn’t expect people to stick around if even I can’t handle my own illness. It’s a lot. Believe me, I know. 

Over the years, I’ve made amends with many who left, but most never gave me a conversation for closure, or even just a goodbye. I’ve thought a lot about what I would say to those people who left without so much as a goodbye, and so I decided to write a letter. 

This letter is to no one person in particular, but instead is inspired by my accumulatory loss of countless friendships and the things I wished I had said to them. 

Dear ex best friend,

We always said forever, and I know we both believed we would beat the odds. I’m genuinely sorry that we didn’t.

Losing you was my first and biggest heartbreak. 

I know I shouldn’t apologize for this, but I’m sorry that I got sick and that it was too much for our friendship to survive through. I know it’s not my fault that I got sick, but it’s hard not to feel somewhat responsible for this. I truly wish that our friendship didn’t have to be collateral damage of my illness.

I’m sorry that I missed out on all the things we said we would do together. I wanted to be there. I wanted to be a part of it all, and most importantly, I always still wanted to be a part of your life. 

I’m not sure if you know this, but I need you to know that I didn’t reach out because I was too sick. I was fighting to survive. I really only ever saw or talked to my family or my doctors, and that’s it.

My lack of efforts to try and talk to you and catch up wasn’t personal. I didn’t have anything against you. I was just too sick, and if I did have the energy I hope you know I would’ve chosen to reach out to you. 

Over the years, I have made some new friends, but I haven’t forgotten about you, and I don’t see how I ever could. We were best friends, nothing will ever replace the bond we had and all of the wonderful memories we share.

Although at times I’ve missed you terribly, I realize life has taken us in different directions. I know I’ve changed immensely from my health-crisis detour in life, and I’m sure you’ve changed plenty with time as well. It’s hard to know things will never be as they once were between us, even if we did have a fresh start.

I do have to admit I don’t understand why you never reached out to me though. Was my life really that overwhelming to you? I know it is a lot to handle. 

I’m not mad that you had to leave, especially if that’s what was best for your own well-being. But you couldn’t even say goodbye? Was saying goodbye just too hard for you?

In my isolation I was left to wonder if everyone who left truly just did not care about me at all. But I want to believe that isn’t true. I want to believe that you just couldn’t bear to see me suffer, couldn’t cope with the possibly that I may die, and couldn’t bear to actually say goodbye. 

I’ve wished so much that we could just talk and find closure and peace. Maybe you have questions you want answered, and I know I have countless questions I’ve wished I could ask you. 

I’ve held out hope that you would one day return for us to finally have the conversation of closure we both deserve, but you never showed up, and in my small attempts to reach out to you, I felt utterly rejected. It hurt too much to keep trying. And who knows, maybe you feel the same and that’s why you gave up too. 

I’ve finally realized I need to let go of “us”, move on with my life, and let you move on with yours. 

Although it’s time for me to finally fully close the door on our past, just in case this really is the last time we talk, I need you to know a few last things before I go.

I still love you and can’t imagine a day that I won’t.

Your friendship was priceless to me and I truly will cherish it forever. 

There’s no hard feelings. I really have never been mad at you or solely blamed you for the end of our friendship. I only was ever sad about losing you, wondered what exactly went wrong, and wished things could be different. Please know, I take responsibility for my shortcomings in my half of our relationship.

I hope your life is full of people you can be your true self with, and that they love you unconditionally just as you are.

I hope your new friends support you, uplift you, are there for you, and follow through in doing all of the things you plan to do together. I wish so much that I could’ve been that for you, but I hope they make up for that in spades. 

I have always, and will always wish you all the best in life. 

I hope you find a plethora of happiness, passions, and love. 

I hope your true love is everything we dreamed they’d be and more. 

I hope your wedding is beautiful, that your kids are as fantastic as you were as a kid, and that your lifetime is full of endless adventures and blessings. 

If life every leads you back to me, don’t be afraid to say hello. 

If this is the end, please know I’ll never forget you, and I truly will cherish our memories forever.

Thank you for everything.

And to finally say the word you never could, and the one I’ve been putting off saying for far too long as well, but I think we both need to say it…

Goodbye. 

Love, your ex best friend. 

A Much Needed Vacation

Well, yesterday evening I got home from my first real vacation I've had since I got sick 6 years ago.

My boyfriend and I went to Newport Beach for a week, just the two of us, and it was absolutly wonderful. The weather was perfect, we had an amazing room and a beautiful view of the ocean both from bed and from the living room. We went to Laguna Beach, Balboa Island, Fashion Island, we explored the giant resort, and some near by little areas. We sang and danced and laughed for a week together and it seriously feels like a dream!

I don't think it's all fully set in yet just how HUGE of a milestone this vacation was for me. I did SO MUCH! I cooked all my own meals for a week, and was able to do most of my own dishes too. I was able to take care of myself and do all my needed daily things, AND I still had energy to go on spontaneous little drives and adventures. That's HUGEEEE for me!

Just two years ago I couldn't even walk across the house without help. I was just completely drained and exhausted in every way, and I was done. Not only was I 100% sure that I wouldn't live much longer, I didn't even want to fight or live anymore. I was just tired, and not a kind of tired that sleep even remotely helps.

I also had crippling anxiety, panic attacks, ocd, and depression at that time too, and during this entire trip (from planning, to traveling there and back, and everything in-between) I was not stressed, I was not worried, I didn't overthink, and my mind didn't hold me back at all! I was happy and present and just enjoying every moment, and I'm super thankful and happy that Justin was able to do the same too!

He and I met 3 years ago, so he's only ever known "sick me", and he's seen me and stuck by me through my absolute lowest points in this chronic illness journey. For any that don't know, since we met he's become a lifeguard then an EMT and the last two summers he worked as an EMT. He's planning/working towards becoming a firefighter or paramedic.

He essentially has been the perfect person for me to be in a relationship with because when my health would take unexpected dips and we'd have to rush to the ER, he handled it incredibly well, and I need my partner to be able to handle both the good days and the really bad ones.

To be able to live any kind of a normal life I do need that kind of protection and safety net in not only my partner but also just whatever person I'm with. The friends I hangout with away from home are briefed with essentially a "What to do if I suddenly tank." I don't currently drive so when I leave the house I'm always with at least one person, and essentially I have to be able to trust my life in that persons hands. That is a lot of pressure to put on any person, but I have tanked suddenly countless times and living this way has saved my life on many occasions. I have safety nets for good reason.

I know not everyone can handle that kind of pressure, and thats why I don't have a lot of friends, and haven't since I got sick 6 years ago. Not many can handle that kind of pressure or seriousness, and even more than that, many can't manage act normal or natural if they know the seriousness of my health history. So, I'm incredibly thankful for the friends and people in my life who do handle it and are willing to go the extra mile to be a friend to me. My boyfriend most definitely is a person who has always been willing and happy to go an extra mile or two just to make me happy or make my life a little easier. Words just don't put my gratitude to justice.

Being sick for so many years, its easy to feel like a burden to the people around you. At many times I've felt like a burden or a job to Justin, because he literally is an EMT, that IS his job. But amazingly, this whole vacation he said he wasn't worried or stressed at all, neither of us were, and that alone says a lot about how far I've come.

It is sad to me sometimes to think that he's never even known what I'm like or who I am as a 100% healthy person, but the blessing about him only having known "sick me" is that our entire relationship has been built upon finding the absolute best in even the hardest times. It doesn't take a ton to make us feel really happy and fulfilled in the time we spend together. Genuinely really enjoying each others company and our conversations IS what our relationship's foundation, and I love that about us.

Having this trip and being able to do so much went so far above and beyond our expectations. It truly was amazing, and I'm so thankful to have shared such a big milestone with a person who has been such an essential part of why I'm still alive and here on this planet.

There were many moments on this trip were I forgot about all the hell I've been though the last 6 years, I felt normal, I felt like the old me, "healthy me", and that rarely ever happens to me!

As I'm healing and getting better and better, it's been a re-awakening or a re-birth of me and who I am as a person. This whole journey has been such a transformation and metamorphosis. I've grown and learned so so much as a person in the last 6 years.

There are so many parts of myself that I had long thought died and had come to peace with never having those parts of myself again, but so many things just keep waking back up. It's been amazing for me to be rediscovering parts of myself that have been dormant for so many years, and it's incredible to get to see Justin get to meet and love all these new healthy sides to me too.

He met and loved me so wholly even when I was just broken pieces, and I'd found peace and happiness in that state too. All of this is just bonuses and blessings and miracles and gifts from... idk someone out there who loves me.

I'm blown away with how far I've come in two years since that time, and how far I've come in even just the last year! There's no way I could've done this trip even just 6 months ago!

Yes, I am still held back physically, and still have a ways to go until I'm "healthy." But this trip was such a big accomplishment and such a huge milestone. It's a true testament of how far I've come and I am just beyond grateful for my progress and that I'm still continuing to heal.

This whole post I've been trying so hard to put all of these feelings into words and this still doesn't even come close to expressing the amount of gratitude I feel. To put things as simply as possible...

I am the happiest and most fulfilled I have ever been.

I am grateful. I am humble. I am blessed. 

Thank you Justin for loving me through good times and bad. You truly are one of my biggest unsung heroes. You mean the world to me, and I know this is just the first of many vacations we will get to take together. ❤️

Thank you to my parents for making this trip happen, and for all of your love and support and your continued help in getting me healthy.

Thank you to my family and friends for sticking by me and being happy to be my safety net.

(and last but not least)

Thank you to all the "someones out there who love me."😇 I see you.😘 I love you too. Thank you for everything. 💖