Community Spotlight: Manda

MS is an autoimmune disease functioning off of a confused immune system that attacks the nerve linings (and in turn, the nerves themselves). This typically creates something called a comorbidity (a disease or disorder that accompanies a primary disease or disorder as a direct result of the primary disease or disorder). Many MS patients have a handful of comorbidities that make life extra challenging.

For me, my chronic illness is best dealt with through the lens of some of the ever repeating stages of grief, with a dash of sarcasm and humor, coupled with fellow chronic illness buddies that allow me to vent when I need to.

I’ve found that acknowledging which stage I’m in and understanding how to process that stage effectively and in a way that propels me forward is really the only way my brain can process what I go through. If I sit and think about it too long, it’s easy to get wrapped up in what I can’t do, rather than what I can.

So, what are these stages of grief and how the heck do they line up with chronic illness?
First, you have pain and guilt. I feel like I spend most of my time in this particular stage. Not only do I deal with physical pain, but I also deal with the emotional pain of not being able to live life the way I envisioned or the way I think I’m supposed to. With this comes limitations and with limitations, it’s so easy to get dragged down by the guilt of not contributing to whatever level is expected (whether that is self-inflicted or not.)

The key to dealing with this stage is finding ways to make life easier and celebrate even the smallest of victories. If you enjoyed cooking before you got sick, things like buying pre-cut veggies or pre-made baking mixtures can make all the difference. If you have social obligations, making small arrangements beforehand can change the entire experience. The hardest part of that is being vulnerable and being willing to speak up and make your needs known.

We get trapped in this cycle of not wanting to be a burden (guilt) and then hurting ourselves to make ourselves feel like we’re not a burden (pain.) It’s a vicious cycle, but at some point, you have to make the decision to put your needs first.

Then, you have anger and bargaining. To be honest, the anger side definitely takes up more room here for me. It’s hard to bargain with a faceless disease that ignores 90% of what you do to fight it. My best advice here came from one of my best friends. It’s easy to be angry. It’s easy to STAY angry. So, let yourself pack a bag and hang out in the “angry,” but don’t you dare UNPACK that bag and stay in the “angry.” The longer you stay in the angry, the more bitter and resentful you become and the more it bleeds over into everything else. If you can box your anger up and treat it like a special occasion, you can look at it as more of a temporary thing.

This is one of those things that is helped a ton by access to mental health providers. Friends are wonderful, but sometimes they are just ill equipped to handle the many facets of chronic illness (yes, even your fellow chronically ill friends). If you’re able to have someone give you unbiased validation and direction, it can make things a lot easier to deal with.

Next up, a favorite around here, is depression. I can’t express enough how important it is to have people in your life who can call you out for spending too much time here. Depression is a wily beast that’s hard to tame, but with the right resources, it can be kept caged. It’s ok to be sad, but the depression side is a lot like the anger and bargaining side. You can hang out there, but you can’t unpack.

It used to make me so angry when people would tell me that I needed to get outside because it’s difficult for my body to regulate temperature and heat can very quickly activate tremors in my body. It’s very uncomfortable. However, they were right. The fresh air, the sunlight and not being boxed in by four walls can do wonders for your spirit.

I also recommend getting some plants and bringing them into your space. There is tons of research that show that owning plants can boost your mood, but it also gives you a boost to see that you’re keeping something alive. I’m partial to my peace lily (Plantonio Banderos) because he lets me know he’s thirsty by wilting just a little.

Another thing that helps me when I’m particularly down is giving myself permission to rest. I have to remind myself that it’s ok to not have control over everything, that no one is going to judge me (except myself) for letting the laundry sit a little longer, and that it’s ok for me to protect my peace. I’ve spent a good amount of time curating my social media feeds to show me positive things and reduce the negativity on my radar.

The most important thing about these first three stages is that you communicate with someone/something what you’re thinking. Get it out of your head. Get it on paper, type it out on your computer/tablet, vent to a friend (preferably someone who gets it), talk to a therapist. The longer these thoughts stay in your head, the bigger they get. The more power they wield. So, proactively make the decision to not let them grow wildly.

After you’ve gone through all of these really draining and awful stages, there’s an upward swing, where working through the challenges and accepting your circumstances is a little easier. I personally feel like these three stages intermix a lot. You can kinda feel the dark clouds start to part a little and you feel a little refreshed. You start thinking about ways you can manage life or make things easier for yourself. The whole “light at the end of the tunnel” kind of thing.

Sometimes theses stages last what feels like forever. Sometimes you experience them all in one day. The important thing is to give yourself grace and remember that no one has it together, so YOU don’t have to either.