i spent most of my 20s and early 30s asleep.

i spent most of my 20s and early 30s asleep.

I was diagnosed with both Rheumatoid Arthritis and Psoriatic Arthritis when I was 19. I am about to turn 32. Do you know what this means? I spent most of my 20s and early 30s asleep.

If I really thought hard about this I should be seriously unhappy. I mean, legitimately half (if not more) of this decade was spent fast asleep.


Fatigue is to blame.

Fatigue is my most frustrating symptom, even more so than pain! Does lethargy come on as a side effect of the medications I take? Or is it just my immune system trying really, really hard? I'm pretty positive it is the ladder.

I continually ask my doctor if there is something I can do, or take. It is sometimes hard to stomach my amount of "downtime" but there are no medications to help with it. My rheumatologist wishes she could give me something but until my symptoms are fully controlled I'll continue to feel drained.

It's 1pm and I just found the energy to take a shower. Now I'm ready for a nap.

For those select few who are healthy and able-bodied let me ask you this. You know when you have the flu and feel sluggish and tired and could sleep for the rest of your life? Well, your immunity is on power drive fighting against the virus or bacteria. A chronic illness warrior's immune system is on overdrive every day. I feel that type of fatigue EVERY DAY. Let me say that again... I feel that type of I can't move a muscle or open my eyes to do anything type of fatigue EVERY SINGLE DAY.

And, because of it, I can easily sleep 9 to 10 hours a night, and wake up feeling like I got one or two hours. Sometimes I will have to take a nap in the middle of the day, or I wake up and simply cannot function yet and sleep for another hour or two. Now you do the math, that's 12 hours, half a day. And these are good days I'm talking about. If you factor in the bad days, its probably 18-19 hours a day I spend asleep, resting and laying down.

I was diagnosed at 19 and now I'm 32, that's roughly six and a half years I've spent sleeping. There are a lot of things I could have accomplished in that time... I could have gone to med school (which I feel like I'm half way a doctor given all the meds I'm on, the number of specialists I see, tests that are ordered and my background in Healthcare communication) I could have advanced further in my career, but I've had to account for jobs that will allow me extra time off, flexible hours and the compassion and understanding of my disease and condition that some days I just have to sleep.

I hear my friends rolling their eyes over text when I cancel or push plans because I need extra time to nap in order to function at dinner or drinks. I watch as my peers have kids and get their dream jobs, they are making accomplishments I wanted for myself.

I remember the day I was diagnosed. I sat in a rheumatology office in Eugene, Oregon. I was a sophomore and my mom was with me. The rheum was a Russian woman who I could barley understand with her thick accent and I felt like she gave me a death sentence that day. I didn't know that the rest of my life was going to be filled with being nauseous from medication, feeling like I was 80 years old and sleeping half my life.

It's hard when you're sick, you feel like there is an expectation from the world that you have to be so positive and have this happy outlook on life. I've watched as my friends in this community are battling for their lives in hospital rooms because the medications we take have side effects of cancer and brain tumors, but what choice do we have. It's a gamble. You can't expect me to be happy go lucky everyday. I've learned, it's okay to not be okay. There is no cure for this disease. I'll be lucky if they find one in my lifetime. I'll be lucky if I don't go into heart failure or get cancer from a lifetime on these biologics I take. But for now I'm going to be okay with taking care of me. It's all I can do.


I always make sure my bedroom feels like my sanctuary. Someplace I am comfortable and feel at home in because it's the one place I spend most of my life. So I'm going to grab my pillow sward and blanket shield and fight this battle my body is fighting with sleep.

Sweet dreams from my 30s.

What you think “won’t happen to me,” actually happened to me.  And it should have killed me.

What you think “won’t happen to me,” actually happened to me. And it should have killed me.

dealing with difficult doctors.

dealing with difficult doctors.