Tips for Self Care When You're Chronically Ill
Hi! I’m chronically ill! That means that I’m sick - & I will never be cured.
Now that I’ve got your attention, let’s move on to other things. I don’t usually introduce myself in that way (whether it’s online or in real life) – but this “fun fact” about me will prove very useful. You’ll see!
What’s my chronic illness? I have Crohn’s Disease. That’s an inflammatory autoimmune illness; it’s put in the same category as illnesses like rheumatoid arthritis (also an inflammatory condition). My inflammation affects me mainly in my digestive tract, which sounds manageable, right? Some stomach aches & foods I shouldn’t reach for, but other than that I’m good – right?
Sadly: wrong. Ever since I was diagnosed, my life changed in unimaginable ways. I started a lot of medications. I had to start chemo pills to lower my immune system so that my body would accept the drugs I was prescribed for my “actual” disease.
All of this sounds overwhelming. I’m not telling my full story today (though you can read about it elsewhere).
I’m 20 years old & was diagnosed nearly 18.
Do you have to be chronically ill to relate to some tips & tricks I’m about to give you? Of course not! It is not news that female patients/trans or non-binary patients with “female bodies” (& their pain) are taken less seriously by doctors than male patients with the same levels of pain. Sexism in the medical field applies to healthy individuals, too. It can be an issue at your PCP physical exam; it can be a problem at your gynecologist’s office for your yearly pap smear. Being “healthy” (or relatively so) doesn’t make you exempt from the issue of sexism in the medical field.
Whether it’s a monthly visit, a yearly visit, or an almost-never visit – going to the doctor can be stressful. It can be even more stressful if you’re covering a “scary” topic – that is, one that might involve sex, a serious surgery, a new medication…& so on.
Even if you’re relatively healthy, you can still come across a rough patch. If you walk into a doctor’s appointment nervous or anxious, I hope these little ideas give you some extra empowerment & confidence.
- Bring an advocate – I am 20 years old & my mama still goes to most of my doctor’s appointments. This isn’t because I’m incapable of doing it myself, it’s just because…a doctor’s office is scary, especially when discussing scary topics! When I’m scared, I get confused. Then I get overwhelmed. My mama steps in when I give her my “special look” (which just looks like a scream for HELP!) & continues where I left off. Going off this, make sure your advocate is someone you trust; someone you’ve discussed your medical wants & needs to. That way, they’ll be able to know almost exactly what you want or mean.
- Take notes beforehand – I mentioned in the above point that I get confused & overwhelmed if I’m in a frightening medical situation. I may often forget things, & therefore agree to things I may not really want. Before any important doctor appointment, I jot down some notes on my iPhone app, read it over the night before I go, & whip out my phone if I feel the tears coming while the doctor is talking to me. It keeps me on track, & it keeps me calm!
- Dress in a way that makes you feel confident – This will vary from person to person. It’ll also vary from day to day! Some days, I’ll feel most confident with a simple beanie & cozy pullover on. Other days, I’ll do a full glam look – just to sit in a hospital bed or on an exam table! Is it stupid? I don’t think so at all. If doing a full glam face & wearing heeled boots to my doctor’s appointment is silly, I don’t really care anyway. It makes me feel empowered & confident. It’s like I’m protected by a shield.
- Make a playlist to listen to before walking into your doctor’s office/for getting ready to go to your doctor. I have a playlist called “PRE-SURG PLAYLIST WOOO” & it includes a lot of Top 40 & rap/R&B. Most of the time, I choose songs that fit with the theme “empowerment.” There’s something about “Desperado” by Rihanna that gives my hips an extra little swing as I walk into my doctor’s office.
Will these things make everything about your doctor’s appointment go smoothly? Sadly…no. I wish that were the case! Maybe I’ll get there someday. For now, though, I’ll stick to these tips - & keep adding more as time goes on.
It sucks to be chronically ill; it sucks to have to very frequently deal with these kinds of situations. But – let’s end on a positive note. I’m grateful that my past bad experiences have taught me better ways to prepare for/act at a doctor’s appointment. I’m glad that I have people that care enough to come with me to my appointments. I’m glad that I have so many people that I can lean on for support!
That would be my last piece of advice: no matter what medical situation is in, don’t feel bad to ask friends/family/acquaintances for love & understanding. You’re not a burden; your loved ones love you, & if you know you’d do the same for them, remind yourself that you are not a burden. Don’t have a parent to take you/be your advocate? Find a friend! Find a cousin! Find someone you trust. Friends can be family, too.
My tips won’t make things less difficult, but it might make them feel a little easier. Strut onwards!
Sofia is a 20-year-old student, pursuing a Bachelor of Musical Arts degree with a cognate of Creative Non-Fiction at the University of Michigan. She’s chronically ill, but prefers to say she’s cool. Or edgy. She enjoys music (lots of it; all genres), cats (especially her own, Mačka), & warm weather. You can usually find her reading, writing, listening (& badly dancing) to music, or crying – in a cool way. Sometimes, you’ll see her doing all four at once. She tries to be cool on social media, but isn’t, really; catch her on Instagram at @sofhoney or on her site: sofhoney.com
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