For a long time I have battled with my illness – not because it makes me sick, but because emotionally, I hate how sick it makes me. I’m a 20-something, who should be out with her friends.
I have always been angry that it took my youth away from me. I was angry that I would be at home with my walker instead of out at bars with friends, or at carnivals, concerts, or doing just about anything that wasn’t based around taking meds, refilling meds, doctors appointments, trying to get rid of the chronic pain, and trying to just deal with all of the above.
When I did go out with my cane or walker, I would pass girls my age on the street who were able-bodied and seemed smiling and happy. For me, every time I confronted that scenario, it just represented everything that had been taken from me by my illness – the land of youth, the land of spontaneity, adventure, and running through parks in the summer barefoot.
And this is not to say that chronic illness makes you old literally. As you will see, with a quick glance around the Mighty site, it sort of does. It makes you old before your time.
During the time while I was waiting for my diagnosis, I sat at home, an arm chair warrior, while my friends could have done a season abroad or a trimester of pregnancy in that amount of time. They broke up and got back together, had new flames and left old ones, completed courses, got fired and got new jobs, and had all sorts of news. Meanwhile, all I had to tell them about was, no, haven’t heard back from the doctor yet. I’m still sick in bed.
I remember that time well. I was 22 and a half years old when I was diagnosed with lupus. Now, turning 29 next week, I see those years in between as a mixed bag of some of the best and some of the worst, but they are not what I pictured for my 20s, or what most people picture for their 20s. They are filled with loss and pain, and many other things, because of my illness.
A big part of losing your youth is due to losing the things that youth represents, and what we may associate with it or that comes along with it. For example: When you take medications, you aren’t supposed to drink. This is very taboo and nobody really talks about it But, this is important – especially with conditions like lupus. Your life sustaining organs are at risk with that.
Over these six or so years, I have tried just about everything I could to “stay young and hip” while I was in fact becoming old due to my illness. I tried the alcohol thing. I tried a high-fat, fuck-you lupus and kale diet, thinking to myself, “What’s the kale gonna really do when I’m in this much pain anyway?” I also (unintentionally) tried retaining youth with its characteristic of poor sleep habits, living in a land of Netflix, while eating fast food. When doctors asked me why I was so stupid, I would reply, “You don’t know what it’s like to have an illness and be young, do you?”
Because they don’t. And you’ll know this, if you have chronic illness and see doctors, who don’t understand.
Having an illness and being young at the same time means wanting to remain young. It means wanting to go out with that cute guy and not be embarrassed by your cane – especially when you have to cane your way down the long aisle if he chooses a middle seat at the movie theater. Or, it means that when he takes you to a restaurant that was a “surprise,” it turns out to be up three flights of stairs – and on a bad pain day. Then he never calls again.
It means being on a date or at anyone’s house and getting a nausea wave and they all just have to understand while you hide in the bathroom, or at the restaurant in the toilets. It means balancing that act with a smile and then resuming, just as quickly, the act of, “So, what did your boyfriend say about your new dress?” and going back to just munching on some chips, secretly hoping you didn’t get puke in your hair.
It means not being able to go out as much. It means passing on that big concert, or maybe taking online school instead of university, or a combination of both. It means hoping to have friends who will understand that. It means making new friends and a new version of fun that is healthier for your body.
It means wanting to be able to make your own choices such as staying up all night giggling with your girlfriends over a bottle of wine and maybe having a smoke, with some chocolate frozen yoghurt – if you feel like it. Instead, your chronic fatigue and pain has you laid up in bed around 9 p.m., so the good friends will come cuddle in bed and watch movies with you there.
It means grieving all of this, too, just like you do when you grieved your illness diagnosis.
People who are young and sick have to grieve two things:
1. The youth they could have had. The one they have lost. The one that was taken by their illness.
2. The future they could have had. The future that is now different because of illness.
We have to find something else, something better, that will replace the hole that the grief leaves.
I set out to write this to share my experience with other young girls who have lupus and chronic illness. Because, for too long, I tried to keep one foot in the land of, “Hey, I’m healthy, fine and still in my 20s,” and then the other foot in the, “this foot hurts from trying to balance all this and I’m also a bit tired standing up from all this chronic pain,” land.
And it is an all encompassing grief.
Every time I miss out on something fun, turn down a date or leave a party early, I come home wrecked. Not just in pain, but more so from a sadness that this is my life now. Visions of me prior to my illness will play in my head and make me angry. Yet, with each day and over time, I have accepted my new normal and am in my own way adjusting to it.
Part of adjusting to it is letting go of the connection between things that youth typically represents in society, or letting go of what particular things you idealized as being related to being young for you.
For example: Its always made me feel awkward, annoyed, and almost proved how much I’ve lost, when I have to turn down that drink or turn down going on that date because of chemo or a bad pain day, or any number of reasons. I would get angry and want to try anyway, so that I could feel young again.
In time, I learned this was a bad idea and stopped. I started listening to my body. I realized that the only reason it upset me to begin with was because I was associating having that drink, going to that party, or going to that concert with being young – something that I couldn’t do or really be anymore. I found other things to replace it, like neat nonalcoholic drinks and I also started making my own vitamin water with fresh fruit. I found other hobbies and activities that I enjoyed, and in time they became habit.
Sex is another one of these “things” where illness and youth interface – like that one time when I had to delicately find a way to tell my one night stand that my knees hurt.
And, it’s hard and emotionally challenging to have to go from being young, foot loose and fancy free, to living with limitations. Instead I’m living in a way where each choice that I make affects my health, and where my health affects my choices. I’m no longer living by fun or my social calendar anymore.
These points are important because they show that being young and sick isn’t just about grieving the youth that illness takes with it. Being young and sick means trying to live a delicate balance of still being young and yourself, but also while being sick.
It means that even though we have lost a portion of our youth, that doesn’t take away our desire for it or the things youth represents to us.
When I go to the ER, I am not texting my friends about my symptoms. I am texting my friends about the hot ambulance guys. Maybe after we discuss that and their uniforms, then we talk about the pain in my chest. She’ll say something like, “I see you are using your time there wisely,” to cheer me up, and I’ll laugh.
When I wake up in the morning, I take my pain meds, and then I worry about what I’m going to wear – just as much as the next girl. I want my cane to match my outfits.
I want to go to grad school and actually sit in class. Sit, mind you, without my knees hurting – and I want to walk around campus, and be just like anyone my age.
I don’t want to come home early from parties to rest, or get sick at a dinner party because of my treatment, or pack a medication bag the size of a first aid kid when I go stay at someone’s house…And I don’t want to become upset if I forget the meds to deal with the side effects of those meds.
I just want to be balance being young and sick, and so do we all.
It is maybe hardest, because people think that when you get sick at a young age, you lose all:
1. Ability to be still be young, because you are so sick.
2. That you lose your desire for the regular, normal young person things, because of the stereotypes around what being sick means.
But I can tell you, just from my experience, that this isn’t true. I do not desire these things any less than a regular 20-something year old girl would because I have multiple chronic conditions.
I want just as much as the next girl to sleep with Ryan Gosling. I want all the things that any girl my age wants. It’s just that I can’t always have them.
Being young and sick is about finding and keeping a foot in the place where you can still enjoy being young, but also be sick at the same time.
Have I figured that out yet? No. But I’m trying.
A part of me doesn’t know if I’ll ever fully realize the grief for my lost youth. A part of me feels like I’ve gotten a second chance at life, a different life, one that was maybe better for me than the one before…Like having two bikes and you lost your favorite bike and you’ve been given a different bike that maybe, in the beginning, you don’t really like as much. Maybe in time you’ll learn that it is better. Maybe it takes hills easier, will last longer and actually turn out to be the better bike.
And, maybe I’ll like this bike better, but for now I still have the training wheels on.
Follow this journey on Twenty Something and Sick.
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