Getting Real about Chronic Illness
I’ve been chronically ill and living with endometriosis since I was about 16. Even though I’ve lived with these problems for almost all of my life, it’s never made it any easier for me to open up and talk about it.
Even now I tend to downplay my own issues when in certain company, partially because I just hate feeling like a burden on anyone and I’ve always been an independent problem solver, but also because I know that for most people who don’t have these experiences, it’s hard to understand and I’ve gotten so many mixed responses, some obviously very well-meaning and of their best to understand, and others, well, extremely cold and dismissive. After so many times, it feels easier to just not talk about it unless I really have to, or to somehow bring humor into it to ease the uncomfortable subject for all involved. Or maybe its just me?
These past few years I have definitely gotten more vocal and am doing my best to push past my own fears, comfort level and to be honest about my own life, experiences, and limits whether its to friends, family, work, or here within the internet world. And becoming more honest and open about all of it has helped me a lot. When I was younger, I used to think I could just push through the pain, I would constantly push myself and overextend, and ultimately, I suffered immensely for it.
Outside of the severe pain and symptoms which come with being chronically ill, I think there’s even less focus or awareness on the fact of how living with a chronic condition drastically alters your own life, experiences, and the ways in which you think/feel/and go through life. I know that how I think and make decisions is so different from how most would, because I have to always consider my own health and limitations. And I think that this is one of the hardest parts of living with chronic illness, is coming to term’s with one’s own limitations.
First off, I hate the word limitations. I hate the idea of limiting anything, for me personally, I love life and I love to experience as much as I can and I am always seeking to learn and grow, and so as soon as I feel boxed in or limited, it drives me a little crazy. Being that way just personality wise and then adding living with a chronic illness, has been for me, quite the test. But I’ve learned to love and accept this and reframe it in this way;
“I’ve learned to listen to my body and mind and what it needs. When I say no to something, it’s because I honor my needs, I respect and love myself, and I know that by saying yes, I am hurting myself.”
Sometimes it can look like saying no to a night out with friends. Sometimes it looks like saying no to certain foods or drinks which you know will hurt you or cause flare-ups or symptoms. Other times it’s saying I need to rest and stay in bed all day, even though there may be dishes that need to get done or groceries to get. Sometimes, we just have to say no. And once you start expanding that past the daily aspects of life and into bigger picture sorts of things, that’s when it can become a little harder to accept.
I’ve lived with endometriosis for 15 years. It has significantly impacted and shifted my life. There’s countless things I would’ve loved to do when I was younger and experiences I missed out on because I was sick. It used to get to me so bad. I’ve always wanted to travel to other countries. It’s hard to plan trips when you never know when exactly you’re going to have a flare-up or get sick. Whenever I do anything, I have to quite literally calculate the days and stick to such strict scheduling and be aware of so many things, just to make sure I’ll actually be available that day and good to go.
There was one point in my twenties where I really wanted to go teach abroad and live in Japan. I started studying the language, the culture, researching the schools and programs, I even made some friends online who either lived over there or were also teachers. I was that serious. At this point in my life, I was still working on getting my symptoms and health in better control. I was doing a lot better, but it still wasn’t enough. I was still getting severely sick and in pain each month, and eventually I realized that trying to move and live in another country while managing my health was probably too much to take on.
It was moments like this where the sort of hopelessness can kick in and the depression. You end up with thoughts like…
“This is really my life. I’m not the one in charge, this illness is. It dictates what I can and cannot do. I’m imprisoned in my own body.”
These are the types of thoughts that can and will go through your head when you live with a chronic illness. And these are the much more milder ones. The toll on one’s own mental and emotional health is just another area that is widely overlooked when it comes to a chronic health condition.
Living with chronic illness especially if it effects you early in life, I feel like it just changes the way that you will think about so many things, things which most of us take for granted. There’s a good chance I may never be able to have kids, infertility is just another issue one face’s with endometriosis. I’ve thought about the fact that if I ever get married, how would I go about planning it?
Granted, my health is better and more stable now than it’s ever been, and that I’ve been able to manage my symptoms where I can go about my life normally. But…I still experience some pain and symptoms, and what happens if and when I do have a major flare-up? How do you go about planning for such a big day and other such life events when there’s no way you can know what your body will decide to do when that day comes? These are legitimate thoughts and fears that I have and the list could go on and on.
I feel like these are perhaps just the little unknowns, the things many would never even think about or consider when they hear someone say, “I have a chronic illness”. The missed opportunities, the lost connections, the loss of certain life experiences, the fear of other life experiences.
It’s more than living with pain, symptoms, and flare ups, it’s going through life with a completely different lens on. — Solstice Holistic
It’s having to stop and think over and over about the smallest of things and the biggest of things. And oftentimes, we find ourselves navigating through all these thoughts, emotions, pain, and fears alone. I know, because I’ve been there and at times even now, I will find myself there.
