I haven’t written an article in quite some time. I’ll be honest, I’ve been grappling with something since I won my disability case.
After the initial feelings of overwhelming relief started to wear off, I realized that I could now fully accept my status as a disabled individual and move on with my life. With the approval of the courts system to validate my situation and the financial security granted by SSI payments each month, it finally hit me that I was now allowed to live my life without the looming guilt of not having a job. My status shifted from “unemployed” to “disabled”, and suddenly, the shackles of that societal pressure to be employed were gone. It was an odd feeling to realize that, and I wasn’t really mentally prepared for the change.
I never really considered what it would be like after I won my disability case. All my life, I was taught to study hard, work even harder, and become something. Do something. Now, as I sit here with my newly granted permission to be free from those expectations, I feel lost. As I watch others around me engaging in “normal” life, I feel like I’m living in an alternate reality. In some ways, I suppose I am. My “normal” is very different from the “true” (average) normal. Managing life with a debilitating rare disease is way more complex and involved than a simple article like this could ever convey. I am constantly brainstorming ways in which I can explain what my life is like to people who have never had to experience chronic illness, but that is proving to be just as difficult as explaining music to a deaf person, or color to someone who is blind. Until I’m able to really explain it in a way that the general population can understand, you’ll just have to take my word for it. I’m working just as hard as someone who has a full-time job. My responsibilities are just… different– more subtle and way less involved, but constant. Even though it looks like I’m living the dream on a permanent vacation, nothing could be further from the truth.
My previous endocrinologist said it best when she told me “You can not handle full-time work, because you are already working full-time as your own pituitary gland.”. It’s true. From the time I wake up until the time I go to sleep at night, my life’s main focus is keeping my body alive by making sure I am taking all the hormones necessary at the proper times throughout the day, making sure I am managing my energy well enough to balance necessary exercise with necessary household tasks as well as moments to allow my body to rest, and trying to find the time to work on enriching activities in between those things. I’ve tried to create schedules to stick to to give myself some form of routine, but the unpredictable nature of my body has made that an impossible goal. I can have a schedule to take an online class at 10am, but that plan could be derailed by a random flare-up of debilitating symptoms that cause me to have to lie down for an hour or so. No matter how much I wanted to take that class at that specific time of day, I am not in control of my body. I have to learn to be flexible.
I have found it best to wake up in the morning, gauge how I am feeling that day, make my best guess as to what I think I can achieve with what energy I have, and make a list of short term goals I would like to accomplish that day. I write everything down in a fun productivity app called “CARROT“, and check them off as I do them. Sometimes I can’t do everything I plan to do, and that’s alright. I used to feel guilty for not meeting my own goals, and CARROT does get mad at me on my low energy days when I’m unable to stay productive, but even then I am learning to find value in even the smallest of tasks in order to keep her wrath at bay, logging the simplest of things, like “shower” or even “allow yourself to rest”. Some people might scoff at this, but hey, that’s my reality. It’s different from yours, but it is what it is. When you have limitations, you have to learn to really appreciate every little thing you are able to do. I think that if normally healthy people could learn to be mindful of their minor accomplishments like this, people could be much happier overall. My favorite TED Talk discusses the importance of being grateful, and I have really taken that lesson to heart.
Even though I have started to find my footing and learn how to lead a good life with my disability, I have found that it’s a challenge to allow myself to actually enjoy life. It might seem silly, considering how happy I truly am, and how much fun stuff I do each day in order to enrich myself and keep my mind active- learning new skills and strengthening the ones I already have. There is still this strange sense of guilt, like I am not allowed to enjoy those things… Like I haven’t earned it.
I know that feeling is wrong, and I know where it originates from. Partially to blame is ignorance in society as a whole, but I have also experienced direct harassment and judgement, and even though I know it should not carry any weight whatsoever because it came from an overgrown playground bully who only wanted to hurt me, it still stings- mostly because the things they said to me are thoughts I have directed towards myself at one time or another.
This is the attack I am referring to. It came from my sister’s abusive ex-husband, posing as his eight year-old daughter on Facebook (I cropped out her name and picture for her privacy) in order to anonymously harass my sister’s family in retaliation for her leaving him (I’m still very proud of you for finally kicking him to the curb, sis!). He left this comment on a post I had made sharing my booth at the Farmers’ Market, where I occasionally set up to sell my artwork on those rare days when I am feeling well enough.
⬅ I don’t have to defend myself from this attack, but to give you some context, the Farmers’ Market lasts only four hours, from 8am until 12pm every Saturday, I have help setting up my booth, and I do not set up on days when the temperature is too high, because it does exacerbate my symptoms and has the potential to make me extremely ill. This man (and I use that term loosely) had no idea what I have to do in order to get out and set up at the market. I hardly make any money at all there and I spend all my energy for the day in those few hours, causing me to spend the rest of the day and occasionally the next day as well recovering from the activity, but I love setting up when I am able to because it gets me out of the house and gives me a chance to meet people and socialize. Fighting the isolation that comes with being chronically ill is an extremely important part of staying as healthy as you can be, physically as well as mentally.
His words are baseless, but they were still harmful, and I have to really fight to retrain my brain and allow myself to accept that I am allowed to enjoy my life, even though there are unfortunately always going to be people out there who will judge me like this. There is absolutely nothing I can do about that. I hope being open about my life and my conditions will help alleviate some of the ignorance perniating society and bearing down on those of us living with disabilities, visible or otherwise.
Incorrect as they may be, it’s going to take some serious effort to overcome the guilt that comes with these judgements. I’ll admit, when I am taking the time to practice my new mandolin, or appreciate a quiet moment out in nature, that guilt makes it harder for me to really enjoy it. I feel like there’s this dark cloud just sapping my enjoyment in that moment, and I feel wrong for being happy. It really is deeply depressing, and I am working with a therapist to hopefully get past that.
I hope that acknowledging this block and sharing that on here will be a big step towards overcoming it. I will have to make a conscious effort to shut down those feelings when they arise. I am a work in progress, but the key word there is progress.
RIght now, I am going to make a promise. Hand on my heart, chin up towards the sky, shouting it loud and clear for the whole world to hear it; I promise to add something new to my to-do list every morning from here on out:
Enjoy a moment. Really enjoy it. Meditate on it, and do not allow a sense of guilt to arise. You can do this. You are allowed to do this. Allow yourself to be shamelessly happy, even if it’s just for ten minutes. You deserve it.
I will do this every day. You should join me, too. 🙂
Here are some pictures of some things in my life I am grateful for. I started learning how to play the mandolin. It’s something I have been wanting to do for years now, so a mandolin was one of the first things I bought with my disability pay. When the weather and my health both permit it, I like to take my bike down to a nearby river and practice playing my mandolin in the quiet reprieve of nature. I made sure to create an inspiring space at home in which I can spend time being creative as well. With Justin’s help, I even have a nice vegetable garden in the backyard! I’m also working on growing some herbs for my own medicinal teas.
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