Coping With Isolation
Being isolated is definitely nothing new to me, and most likely not to other people with endometriosis. But the past few months have been particularly challenging as far as being stuck inside. I’m struggling to have any sort of enjoyment of the nice weather or social interactions. It’s hard to even convey how depressing it can be to have so much pain that you’re unable to simply put on a mask and sit outside, let alone walk around.
The state of the world has seemed so dark lately, that also feeling so distant from people around you quite honestly feels heartbreaking at times. I wish I had the answers to help others who are also feeling like this. I wish I could make our pain disappear and give us the life we feel we are missing out on. The life we felt we were missing even before a pandemic started. But that being said, I am working the best I can to make things just a little easier mentally during this time.
Lately I’ve been trying so hard to, at least, get out a certain amount of times a week. I tell myself two days a week I’ll just go on a quick walk outside. And then I wake up, with an abdomen that feels as if it’s wrapped in hot wire and I know right then and there, I will hardly make it to the couch that day. My abdomen is swollen, sharp pains contract in my pelvis, it is truly hell on earth. And it’s so easy to feel defeated on days like this. I get so hard on myself because of the fact that I have been inside for so long. I tell myself that maybe I’m just not pushing myself hard enough. Then the worst part, I blame myself for my own depression because I am the reason I’m not going outside. I’m the reason I haven’t seen a friend in months. And these thoughts can be truly crippling.
But listen, none of these things are true. When we wake up in debilitating pain, the best thing we can do for ourselves is to listen to our bodies. If it is saying that you can’t do something, then that is unfortunately just how your body is today. Your mind was determined to do one thing but you do not have control over the rest of it. So yes, I have hardly made it out of the house due to the pandemic and because my pain has been awful. And is that making this time extremely challenging and depressing? Yes. But nothing I did or didn’t do is causing these feelings. All I can do is listen to my body and that itself is something to be proud of.
I know it’s not just the disabled having a hard time not doing things they want to do. I completely understand and am sympathetic to those who aren’t used to living life in this different way. But I also can’t help but think about how nice it would be to not have pain while being stuck inside. To wake up and not have that be the first thing I think of. Whether you’re inside alone or outside with friends, pain consumes each thought. It controls every aspect of your day, no matter what.
So as I am continuing to see able-bodied people doing fun things during this time, it creates an enormous amount of jealousy. They’re able to social distance in the park with friends or adventure outdoors. This might not seem like much to them, and most are still upset at what they can't do. But for us, it's everything to be able to do these things. So this just makes wish they could imagine what it’s like to not be able to do any of that. What it's like to not only be controlled by Covid, but also by your very own body. And I can only hope this time opens up their eyes to what the disabled have experienced for so long.
I’ve mentioned depression a lot because I believe isolation and depression go hand in hand. Ever since I got diagnosed with endo, I’ve felt extremely alone. It’s easy to feel that way when you’re the only one stuck in your body. You have to be your own advocate and make all the decisions for your wellbeing. But now things are so much harder on us. I know so many other disabled people, especially those who are immunocompromised, are also experiencing this. Even going out to the doctors is risky and many are avoiding that all together. All of us are definitely navigating this new way of being chronically ill right now. But the fact that I'm not the only one feeling this way does make me feel less alone.
So now I want to share what I’m working on each day to help my depressive moods. I’m trying to stop, or slow down, my negative thoughts right in their tracks. If I’m in too much pain to see a friend outside, it’s okay. I tell myself tomorrow is a new day, I will try again then. I’m also focusing on managing my pain constantly. All day I remind myself to move my body when I can, stretch, drink plenty of water, and sleep when my body needs it. I also remind myself that though I feel isolated, that does not by any means mean I am alone. And of course, I am working to keep in contact with friends and family when I can. Taking full advantage of social media and technology. If I have to cancel plans, I make sure to still catch up with that person for a bit over text or phone.
Though I’m trying to hold myself accountable to do these things, it doesn’t always happen everyday. There are still days where I’m not putting my body first, where I am just too fatigued to focus on my thoughts. Or days when my flare is so unbearable that I am just extremely depressed. And all of this is okay, all of this is just a part of being a human with chronic pain. I am constantly reminding myself that during this time we are all in this together. So on days when I feel my most alone, and most in pain, I know that out there there is another person feeling the same way. I think of them and hope they are not blaming themselves either. I hope they are listening to their body, staying safe, reaching out to loved ones, and doing whatever they need to lessen their pain. And that on days where they feel like they just can’t do anything, that they let themselves do just that. Because it is always okay to not be okay.
People with endometriosis may also have bladder issues. Have you experienced overactive bladder (urinary frequency or urgency)?
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