Note: This post has remained half written and saved as a draft for over a month and a half now. I’ll be honest, talking about my chronic illnesses is difficult. However, I feel that being honest and open about what I face every single day is important for you to hear as a reader. I also feel that if there is anyone out there who reads Dani Dearest and is also struggling from a chronic illness that this post will help you to know that you aren’t alone.
As I write this post I am sitting in my bed with a heating pad on my back and a brace on my left wrist, having recently turned down going out dancing with some friends due to being too worn down from a day of sitting in an office and going out for dinner.
I will wake up tomorrow morning and feel exhausted, despite having gotten around 9 hours of sleep. I will eat a full breakfast to help maintain my blood sugar and then I will go to one meeting, three classes, and usually one or two more meetings after my classes. Then I will get home, take a nap, take some Advil, do some homework, edit a blog post, and do it all again.
That’s a good day. Other days aren’t nearly as productive and leave me in bed due to pain or fatigue the entire day.
I live with 2 chronic illnesses. Hashimotos Thyroiditis and Ehlers Danlos Syndrome. In short, my body is attacking itself and killing my immune system, and my joints are in constant pain and inflammation due to a connective tissue disorder.
I won’t sugar coat it – being “young” and living with a chronic illness is incredibly difficult. Here are some truths about living with a chronic illness in college, and what you can do to help if you have a friend going through the same thing.
I hate turning down invitations to go and hangout with my friends. I hate being the one to leave the party at midnight because I have to get a solid night’s sleep or I won’t be a functional person in the morning. I hate having to take a few days to recover from one dinner out with a co-worker.
Having to turn down these invitations and rarely being able to go out and be social or active for long periods of time can be really isolating, especially as a college student. While everyone needs their periodic alone time, it’s never fun seeing your friends having fun without you.
One thing that has helped me personally feel less isolated with my chronic illness is joining support groups on Facebook and following online resources for people with chronic illnesses such as The Mighty. However, be warned, sometimes these groups can turn into pity parties and make you feel even worse about your condition. Know when to tune it out.
How you can help
Have a friend living with a chronic illness? Keep inviting them out. Even when they turn you down, know that they really appreciate it and really are trying to get up the energy to spend time with you. Let them know you’re there for them if they need anything. Better yet, offer to come over with takeout and watch a cheesy movie – something lowkey and relaxing like that might be exactly what they need after a stressful week.
Back to back classes, work, and meetings are a struggle for anyone – especially when you’re living with a chronic illness.
Some days I can do it all – some days I can’t even make it out of bed. Some days I find myself wondering if I should go to the ER – but those days tend to end with the doctor saying “I don’t know… I guess it’s just a flare up?” with a shrug.
It took me 3 years to get diagnosed with my autoimmune disorder. I went through 3 years of being misunderstood, not believed, tested, retested, misdiagnosed, and tossed from specialist to specialist.
Middle school is already bad enough – imagine dealing with mysterious health issues that nobody believed that you had. For example, one day in middle school I woke up unable to straighten my legs and I had to live in a wheel chair for a week until, suddenly, I was fine again. We never figured out why that happened, the doctors had given up.
Some days the medications and other treatments work great. Other days they are suddenly ineffective and you have to start all over.
How you can help
If you know someone living with a chronic illness who is going through a difficult time, be there for them. Be patient with them. Ask them what they need and how you can help.
My boyfriend is a wonderfully supportive in these instances. Sometimes I need something simple like a massage or a cup of warm tea. Other times I need things a little more complicated like for him to make me breakfast, or to pack my lunch because I can’t move fast enough that morning, or to pick me up from wherever I am and drive me around town to help calm down a panic attack. Sometimes its a little tough love like setting a timer forcing me to work before I can take breaks to lay down on my heating pad and relax.
Even if it’s something simple like getting them an ice pack or delaying your brunch an hour it means the world to them.
It’s an endless struggle of “this or that”
There’s a theory that a lot of people in the chronic illness community use to explain how it feels to live with a chronic illness called the spoon theory. I personally like a different version of this theory called the cell phone theory.
Here is an excerpt from an article on The Mighty explaining this theory:
“Basically, you own a cell phone with a bad battery. It doesn’t matter how long it charges – it’s never quite full. Honestly, it’s hard to predict how much juice you’re going to have when you grab it in the morning. Maybe it’s 83 percent. Maybe it’s only 39 percent. And that’s all you have, so all of a sudden Snapchat and Words With Friends is o-u-t. Maybe you put the phone in battery-saver mode and sacrifice some functionality in favor of longevity, or maybe you burn hard for two hours and are left at the end of the day with a busted radiator, in the rain, and no way to easily call for a tow.
Perhaps you could bring along chargers, but then you’re always hunting for that free outlet at the back of a room. Now imagine it malfunctioning, in and out of airplane mode. The phone is physically in one piece and all the apps are there, but they can’t function. Or how about the stupid thing sometimes just crashes? Boom, black screen, and now it has to reboot.”
That theory does a great job of explaining how unpredictable living with a chronic illness can be. As a natural planner, this is frustrating.
My life as a college student is a constant game of “this or that” – if I do this, will I have the time/energy/low enough level of pain to do that?
If I go out tonight, will I be able to go to work tomorrow? If I go out to brunch this morning will I have enough energy to do my homework later this evening? If I walk across campus to my next class will I be in too much pain to go on that hike I had planned tomorrow?
How you can help
If you have a friend living with a chronic illness, be understanding with them. If they need to reschedule or cancel – be patient and understand that it’s nothing against you or your friendship.
Recently I had morning brunch with a co-worker (hi, Sara!), when scheduling I asked her if noon was too late for brunch. She said it was fine! Later she told me that she actually was about to suggest 10am instead, but then she remembered that I had work really late the night before and that I get tired more easily than other people and need a substantial amount of rest to recover from something like that, so she agreed to noon. That little gesture meant the world to me.
When I started college I turned into a planner. Honestly, that was the main theme around the start of this blog: organization. I’ve been told by so many of my friends that they love how organized I am and wish they could be the same! The truth? I have to be organized and have my day planned out in order to deal with my chronic illness.
I can’t wing my days anymore.
I have to make sure I give myself enough of a break between activities to recover, take meds, eat an allergy friendly meal, and take care of myself.
However, this need to plan has transformed into a want to plan. I’ve found that I am able to accomplish so much more when I plan it out!
Due to this love for planning and organization, I was able to take on an insane amount of work at once (18 credits of classes and 3 jobs) and make it all work. While, at the end of that time, I was exhausted and needed a long time to recover, going through that with a chronic illness really made it clear how strong I am.
Everyday that is productive, despite the pain, I feel stronger. I’m living with a chronic illness, yes, but I am also the founder and president of one of the largest student organizations on my campus, the founder/blogger/influencer behind this blog, an intern for a large company, a stage manager by hobby, in a healthy and loving long term (and sometimes long distance) relationship, and a full time student.
Juggling all of those things (and doing it pretty darn well, I might say) makes me proud of who I am, and how strong that I am. That is rewarding, and it makes me unique.
How you can help
While it is important to be understanding, patient, and accommodating for your friend with a chronic illness – don’t treat them like they are fragile or weak.
Your friend knows the limits of their illness, their body, their mind. You don’t. Don’t step in and make decisions for them about what they can and can’t do, where they can and can’t go, and what they need. Be there for them, but don’t assume that you know what is best – they are stronger than they may appear.
It’s a part of me.
I was diagnosed with my auto-immune disorder when I was 13 and my connective tissue disorder when I was 18. These illnesses are a part of who I am and they have shaped a lot of my life.
As much as I will curse these things every morning when I wake up, get frustrated every time a new symptom appears, and get fed up with myself for sometimes being unable to do “simple” tasks, this is who I am. Accepting that and being able to grow with it has been a huge step for me.
My chronic illnesses and I are friends. We live together, mostly in harmony, but sometimes we get into fights. That’s okay.
Some days are bad, some days are good, but overall it’s the love and support from my friends and family that really helps me to understand that I can get through this and realize how strong I truly am.
Recently my brother sent me an article that he found on Tonic/The Vice that was written by a 27 year old woman also living with Hashimotos called “Having an Autoimmune Disorder Makes Me Feel 50 Years Older” with the hilarious (but oh so true) tagline “What it’s Like Living in an Old Person’s Body at 27.”
I sent that same link to a few of my friends, who immediately said that reading it really helped them understand what I was going through and that it should be mandatory reading for all of my friendships. While I’m still debating forcing homework on potential acquaintances, if you’re interested in hearing more about what living with a chronic illness is like I highly recommend checking out that story.