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When You Fear You've Lost Yourself to Your Chronic Illness

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Writing about chronic illness is something I enjoy, because one, I like to write – and two, I like to bring awareness to the struggles of life with invisible and chronic illness. Why? Because I see so many hurting from the insensitive and unaware humans around them. So it is my hope that if just one person reads my piece, that it will touch them and they will be moved to act in a way that they otherwise may have not.

But lately, I’ve been trying to pull out a topic to write about that doesn’t have to do with chronic illness. And it’s hard, because unfortunately, it is a part of my life now. But despite that, it is not who I am.

I am still a person with likes and dislikes, with hobbies and strong beliefs. With things that makes me, me.

But chronic illness has tried to take that all away and leave me stuck in my bedroom suffocating from the
lack of living. But I’m not going to let it. Even if it means somewhat paying for it later, I can say I lived despite my limitations. Because lets be real, anyone with chronic illness knows we are already in pain, already exhausted, already trying to keep it together for the crowds. So I might as well at least be in pain for a reason that fills me with contentment.

So yeah, there are going to be days you see me out and about, or enjoying company at a gathering. Don’t assume I’m all better. Don’t come up to me and say, “I’m so glad you’ve turned the corner.” For now, I have no corner to turn. Until the insurance companies want to stop playing doctor and dictating what medicines or treatments they do or do not want to pay for, I am still sick and waiting for that silver lining they talk about up in those big puffy clouds. But I am going to live, despite what the insurance companies try to control.

I had to find a to place for the love that was overflowing in my heart. I had big ambitions as a teenager. My life was going to be filled with helping people, physically, spiritually, emotionally. Physically I am a limited now, whether or not I want to admit that. I can’t stand for long periods of time, or lift hardly anything or spend hours in a physically demanding job. I just can’t.

So my dreams of working in the medical field to help people has slowly gone out of focus. For a long time, that caused an ache in my soul that couldn’t be treated. I felt so stifled.

But I had to find a way out of that feeling.

I can still learn about medicine. My interest in it doesn’t have to disappear just because my body can’t keep up. I love getting one of my medical reports and dissecting it word by word until I understand it in its entirety. Then when my doctors talk to me about it, I can keep up with what they are saying. I might not be able to start IVs or assist in surgical procedures, but at least I can understand some pieces of medicine. So I haven’t lost that part of me.

For a while I thought I couldn’t enjoy another aspect of life that meant so much to me. Animals. I love animals like the sun loves the sky, like the moon loves the night. Animals fill me with such joy. And as I watch my two little pups fight over for the prime space on my lap I realize they love me too. They know who is an animal person and who isn’t. And I am seeing that same love blossom in my little girls. It makes me so proud. I think if you love animals you have a special gentleness. Not everyone has patience for a being that can’t really talk to you, can’t always do what you want, and sometimes is much louder than you care to deal with. And that’s OK cause we are all different. But for me and my little girls, we just can’t get enough of our animals. And for a while I let my illness take away that love.

Yes they are work, but in reality, isn’t everything we do? I’ve found ways to combine regular day-to-day activities with whatever work that may be needed for my pets. Because of not restricting who I am and the loves of my heart, I’ve found life is less painful. I mean, physically I am still in pain each and every day. But emotionally I am not so restricted.

I am not my illness after all. I am so much more. I am a wife, a mother, a best friend.

I am blessed to have a husband that saw past when people said, “She has enough on her plate.”

Illness? Yes. That is a lot to deal with. But where is the joy in that? He saw my heart needed a place to put this love. I already oozed love onto my little people.

My husband saw who I am and let that go free. Because being left in the mentality of, “Nope, you can’t do that. No, you can’t do this. Nope can’t do that either,” causes a lot of heartache.

He knew I was more than a sick mom.

He saw I needed a way to express myself – even if it is from my bed at times.

So he got me a laptop so I can express myself in writing.

He got me our little dogs who are always with their family, usually one with the girls and one with me.

In fact, our one pup often lets me know when my playtime is over and it’s time to rest, before I can even see it.

The writers dog sitting on her leg.

So if you have a close loved one that you are trying so desperately to protect, remember protecting them doesn’t mean saying no to everything. Sometimes protecting them is letting them be them, just help them find a way they can do that in a way that doesn’t hurt them.

There’s still lots that I wish I could do. Some things physically I’ll never be able to. But I can still watch my little girls do what I never could. I am that nauseating mom that just beams from ear to ear as I watch them grow into amazing human beings. And I seriously don’t care if you don’t like my gloating over them.

Because you see, I am not just my illness. I am a proud mom, a wife, a best friend, an animal lover, an avid writer.

Sometimes we need to break apart the illness that tries to constrict us so tight it feels like we can’t even breathe. Because honestly, chronic illness is suffocating. There is no nice way to put what it feels like to wake up one day sick and then wake up 10 years later still sick, and unable to remember what feeling healthy feels like anymore. That can make us feel so angry, so bitter.

It’s OK to feel those emotions sometimes. Feel it, cry it out, grieve it.

But then dry your tears and figure out how you can still be you. It may just be in a different form of what you wanted in life. If you look hard enough, you can still find ways to be yourself. Figuring it out may take some time. But the more you try, the more you’ll feel like the old you again.

I am not saying go out and shovel your driveway, the sidewalk and the neighbors driveway when a blizzard dumps a foot of snow on your home. That is not going to help anyone. There is a difference between pushing your body beyond its limitations and trying to enjoy a few moments in life.

I am saying if you want to go make some snow angels in that blizzard for just a little bit because it will bring a moment of joy and satisfaction, then do it.

I am saying if your favorite song comes on and you feel like being silly and dancing around to it, then do it.

I am saying to make those cookies with your kids.

Pull up a chair if you can’t stand for long, and depending on their age, make them do most of the work – that will thrill them more than words can say.

You’ll make lasting memories even if all you did was supervise and pick the shells out of the eggs that they had to crack.

At the end of the day, you’ll be hurting, because you always are. But being in pain without losing who you are and what you love, the pain might be just a little easier to tolerate.

You are not your illness. You are so much more.

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Originally published: December 30, 2017
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