Several people have reached out recently asking how to help their loved ones who are currently in a very dark place with their mental health, be it from a diagnosis, or struggling in other ways without feeling suffocated or taking on too much for them to bear. If you’re feeling this way, take it from someone who has been on both sides of that situation and know that if you’re overwhelmed, you feel trapped and you’re terrified of “abandoning” that person, you are not in a position to help them in the way that they need and that is not your fault. We all have to worry about our own health first. We’ve heard it a million times, and that’s because it’s true; You need to put on your own life vest before you can help others put on theirs. That is because we are no good to anyone if we are not taking care of ourselves first.
Doing the work that I do with The Suni Side Up Project and setting healthy boundaries with people was something that required a lot of trial and error and learning from my mistakes. In the beginning I had no boundaries and therefore I also had no space that was my own. I made myself far too accessible and realized that I couldn’t be everything to everyone. Setting boundaries has always been something very difficult for me even from a young age, but I’ve grown to know that it is entirely necessary. I am an empath by nature and I am also someone who always wants to help and be of service. I am compassionate and I am always deeply inclined to relate to people, meet them where they are, and take on their pain and grief. I have a natural inclination to want to save people. THIS IS NOT SUSTAINABLE.
I know this stemmed from being very close with a relative that struggled with addiction and depression for our entire relationship. I found myself constantly thinking that my love could save them from themselves. I always felt like I had to prove to them that they didn’t have to fight their demons alone and I didn’t want them to feel abandoned by me. I thought that if I could just say the right things and always be there for them, I’d earn their approval and they wouldn’t need to succumb to their darkness. Taking on that responsibility was something that deeply plagued me, and when I finally lost that person, I was traumatized and I didn’t forgive myself for a very long time. It took educating myself to be able to have compassion for my own position in that situation and know that it’s not healthy to try to save anyone from themselves. I think that going through what I did with this person happened so that I would learn the ways that I could show up for people and offer help, while not crossing my own boundaries and enabling codependency. I believe that the only healthy and sustainable way to help anyone is by being strong enough to set healthy boundaries and stick to them.
It’s hard not to want to hold people’s hands through the hardest times in their life, but from my experience, that is not what will benefit them the most. Moreover, it isn’t healthy or productive to take on when we have our own mental health and life balance to monitor. A large part of why I started this blog and have committed to writing as regularly as I do, is to provide a place for people to draw on my experiences and give the best advice that I can while writing in a way that is so deeply open and personal, that they don’t feel alone. I write about the most vulnerable and dark parts of my experience with trauma, mental health, disease and the millions of emotions that come with all of those things. It allows me to still keep a degree of separation between my emotional wellbeing and the work I want to do.
If you’ve followed me for a while, you will likely know that I have long advocated against hating our diseases/disorders. No matter what we do, they are a part of us. My MS is a part of me that I cannot get rid of… so if it is something that I must live with, I want to do so in a way that doesn’t feel anything like self-loathing. I can also assure you that I have never in my 11 years of living with this disease, met a person with an autoimmune disease that is thriving while hating their disease. The people I know who seem to be living well no matter what their degree of disability is (and that is a vast spectrum) are the people who have come to terms with what it means to live life to the fullest with their illness and they don’t hate what is a part of them. I want to clarify that I am not saying we can’t get frustrated, we can’t be angry and have bad days or even weeks. But there has to at least be a foundation of compassion for your body and what it cannot control to always come back to.
When I learned to love my body and connect with myself, I no longer wanted to tell my MS to go fuck itself. I no longer wanted to blame it for all of the things in my life that felt like they were going wrong. I wanted to care for it. I wanted to protect my body against future attacks. I wanted to make prioritizing self-care and wellness my main priority and find ways to be grateful for the new perspective I had on life and my time here. The last thing I wanted to do was spend another minute of my life suffering over something that I had control over. We all have the choice to humanly and imperfectly embrace the struggles life throws our way. I wanted to rise to the occasion because I knew that no one else could do it for me and I was my only hope.
I remember learning in school about a study done in Japan with plants and positive affirmations. A scientist had three potted plants and he wanted to see if sending negative and positive energy to those plants made a difference in how they grew. To the first plant, he’d say nothing. He ignored it completely. To the second, he would say mean things or negative statements. To the third plant, he would say positive affirmations. After repeating this study over and over and watching their growth, he concluded that the first plant, though it did grow some, it did so slowly and didn’t seem to be reaching its full potential given the average growth cycles of its species. To the second, not only did it not grow well, it also rotted and festered. Finally, the third, flourished and thrived. While there was a lot more to that study and experiment (please go look it up if you’re interested), it makes my point well enough here. We are living beings and our bodies are so often a product of our environment. We need to put ourselves in positive environments and be kind to ourselves. We cannot heal what we hate.
The other very important part of all of this is that when you’re in a place that feels like rock bottom, you can’t rely on other people to be the sole source of what makes you feel better. You need to be your biggest supporter and that’s because the biggest mistake that we can make as a person that suffers from a lifelong illness is missing an opportunity to learn how to cope with it independently of others. We will all have to be alone at some point, whether it is for an hour, a day, or even years of our lives. We have to be able to live with ourselves and know that we are okay. Having people in our lives is a wonderful thing, but they need to be additive, not the entirety of our well-being.
We are not responsible or to blame for having gotten our diseases. Anyone who says that we are is wrong and we can meet outside in the parking lot out back this afternoon to fight. What I believe we are entirely responsible for is how we live with the diseases that have chosen us. That is really the only choice we have to make when fighting or living with a disease because so much is far beyond our control. Support is great. I believe that there is a massive need for people to have networks of support no matter what they face in life. However, there needs to be a foundation before there is support… otherwise it’s not support. It’s carrying. The thing about trying to carry someone is that the person who does the carrying will at some point become exhausted, and the person being carried will not know how to walk through things for themselves.
We shouldn’t look to make friends because we hate ourselves and are so jaded and unhappy. Anyone willing to enter into a friendship like that, while their intentions may be noble, are misguided. You can’t start a friendship by wanting to be saved by someone else. By doing so, we’d be contributing the idea that a person doesn’t need to have the self-realizations and growth that are absolutely vital to living with a disease that will be a constant in your life. We have to live with our autoimmune diseases 24/7 and if we rely on others to save us or make us feel better, we not only attract the wrong types of people, we rob ourselves of the opportunity to do the work and pick up the skills we need to learn how to cope in the inevitable periods of our lives where we are alone with ourselves.
In my darkest periods of living with MS prior to my diagnosis, I went into a period of total seclusion. This was several years before I met my husband, Jack. I still had friends but I was very distant from everyone. I was so disconnected from the people in my life because I wasn’t relating to their experiences. I had this terrifying, nagging darkness that hung over everything that I did. Having an undiagnosed disease while trying to live the life of an early 20’s adult in Los Angeles was like trying to run a marathon with a bunch of professional athletes and there I was, with the wrong shoes and my own perpetual storm cloud that would rain on me the whole way making it a totally unfair race. Everyone else looked like life was easier for them. They were luckier than I was, they had less obstacles to face… its was angering! I was jealous, I felt resentful and I knew that these were things that deep down, weren’t the fault of others. I finally had a breakthrough when I thought about the dozens of times I’d heard the words “you don’t look sick.” I didn’t look sick, and yet I was. I was suffering more than anyone around me knew. So logically, I had to tell myself over and over that I was doing the same thing to everyone else. We simply cannot know the private struggles other people face. I had to stop comparing myself to the people I had decided had no problems. It wasn’t real, and it was entirely self-centered and wrong. I knew I had to find a way to move through this and stop seeing myself as a victim and everyone else as a victor. I was outcasting myself by thinking that way.
No one wished this on me, it just happened to be the hand I was dealt. It took me finally acknowledging that I needed to separate myself from people until I fixed how I was feeling from within before I could have healthy relationships again. Did this mean I was lonely a lot of the times? Absolutely. Were there days where I felt like the world was against me and I was swimming upstream? Naturally. But I found comfort in those moments by realizing that I wasn’t against myself. I was committed to bettering my relationship with myself, working on my inner dialogue and creating a new map for my life. Becoming focused on something that wasn’t my disease but would have a positive impact on my health was the light at the end of the tunnel for me. I got a gym membership and started focusing on learning as much as I could about different forms of movement and healthy eating. I knew that if I stuck with it long enough, I would meet likeminded people and attract friendships that would serve me better in the long run because I was an equal part of them and had just as much to contribute as I wanted to take from them.
To attract better people in your life, you should always want to be better yourself first. I live in the belief that everything we want starts from within. My best advice to people who are struggling with relating to others and feeling like no one can understand their situation is to first focus inward. Think about who you want to be friends with. Become obsessed with being as much like that person as possible. What would they like to do with their time? What habits would they have? What would they be interested in? Start doing those things. Learn those skills. Fill your time with activities that put you out of your current routine that isn’t getting you anywhere and expand your horizon. Once you’ve done all of those things, you might realize that you’ve always had the capacity to be your own best friend. There has been nothing more empowering and healing for me to think of the very best friend a person could have and strive to be that. We are so lucky to have the ability to recreate ourselves as many times as we want to in our life. So, if you find yourself in a dark place, or you have a loved one who is struggling and can’t seem to figure out what to do about it, know that there are so many people who have been where you are right now and they’ve survived and you can too. There are several tools and resources available to help people through times like these, but my greatest tool was learning that I could be capable of being everything for myself instead of relying on others to save me. No one can make the choice to change our lives for us. We have to do the work so that no one can ever take that away from us.
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