My name is Courtney and I suffer from an invisible illness.

8 years ago I knew I didn’t feel right when I was out to eat with friends and passed out at the table. The next day when I woke up I was extremely dizzy and I blacked out behind the wheel while driving to school twice. From there I was on bed rest for 5 weeks while I waited for the doctor to figure out what was wrong. Eventually I was diagnosed with Chronic Active Epstein Barr Virus and Chronic Fatigue Syndrome.

At first I couldn’t (or didn’t want to) understand and accept my illness. I wanted to be like every other 19 year old. Except I wasn’t every other 19 year old, because very quickly I would become very ill if I tried to keep up. It was really hard to come to terms in my late teens and early 20s that I couldn’t go out and party all night like the rest of my friends. And of course they didn’t understand; they would say “but you don’t look sick”, which is like the last thing anyone ever wants to hear.  It was really depressing and I cried all the time. I also became kind of agoraphobia.  I wouldn’t go out for fear of getting dizzy or passing out in public. I fail semesters in school because of it, I lost jobs because of it. So finally I took my dad’s recommendation to see his nutritionist. This man was literally a lifesaver (Dr. Christopher Napoli for anyone in the NYC area). He was so well educated on CFS and knew just want I needed to improve my overall functioning.

I’m not going to lie, it wasn’t easy, it wasn’t cheap, and it didn’t happen overnight. It was about a year process of taking up to 20 vitamins a day that I had never even heard of and drinking some nasty powdered vitamin drink; but I got better. A lot better.  I was down to 6 vitamins a day and no powder (YES!). If I got dizzy or weak it usually lasted for an hour or so, and I could fight through it. The bed rest periods had gotten shorter; it was rare I’d have to spend more than a couple days a few times a year resting. I started eating clean and playing flag football. Not only did I feel even better yet, I lost 20 lbs (9kg)! You would think I’d be satisfied and call my case a success right? Nope.

Last year I met my boyfriend; who has more energy than anyone I ever met in my life. He works full time, plays on 4 different ball teams, has commitments to community organizations a few times a week, and still functions just fine. So I tried to keep up, I didn’t want to tell him about my illness, and I pushed myself to do things I shouldn’t. Even once I told him about my illnesses and he was so accepting, I still couldn’t accept the disparity in our energy levels. So I started to do research on alternative treatment to CFS. I found that some doctors prescribed antidepressants; specifically SSRIs, to people suffering with CFS. I saw my doctor and basically demanded I be put on medication, so he prescribed me Lexapro. The first 4 weeks were miserable; I was dizzy, tired, disoriented, and anxious. I was so anxious I was afraid to leave the house without my boyfriend.  But I chalked it up to my body getting used to the medication. The anxiety and dizziness went away eventually. 

Almost 3 months into the medication I wasn’t anxious, I didn’t have any spoonless days, so I thought it was going well. My sister continuously complained about me being absent minded but I figured she was just being a pain. I didn’t realize there was a problem until the 4th of July when I went to put on an outfit I wore in April. I would't have been able to squeeze into that dress even if someone paid me a million dollars. I ran to the scale, I had gained 25 lbs (11kg) in two and a half months! Once it was deemed a side effect of the medication, I started watching out for other common side effects. I WAS absent minded and I had such a problem waking up in the morning. Also my period was on and off all month long (turns out abnormal bleeding is a side effect too). Not to mention I now felt terrible about my body image because I worked so hard all last year to lose 20lbs (9kg) and in 2 months’ time gained 25lbs (11kg).

I knew I had to get off of this medication. I tapered myself off of it over a 2 week period (not recommended, always have a doctor regulate medication!). It’s been about 1 month since I stopped the meds. The weight hasn’t budged but I can wake up again in the morning, my mind is sharp again, I feel better than I did on the medication. Medication may be for some people but it is definitely not for me.

I’ve learned from this experience that I need to accept my illness for what it is and work with it, not work to get rid of it because that’s not possible. I’m refocusing my energy on my nutrition and my physical activity. I’m paying closer attention to my nutrition and I am on 2 flag football teams now (it feels so good to be active). I’ve had good days and bad days in the last month but I’m okay with that. It’s progress not perfection. For me this journey is as much about feeling good as it is about accepting that this may be as good as it gets. There are things I can do to improve how I feel, but there’s no magic pill.  And I think I’m finally starting to be okay with that. 

Courtney's Instagram: Spoonful_of_progress

Holly Gouldthorpe