I like being introspective, and I read self-help books a lot—about all sorts of topics, ranging from happiness and optimism, to shame. The most recent book I read wasn’t so much about the general concept of feeling shameful, but more so about the little things that get us down. For some, the endless and impossible drive to be aesthetically perfect makes us feel shame. For others, it’s not wanting to seem weak and instead have a calm, brave demeanor.
My personal shame is the feeling that I’m not competent—that somehow, because of my health condition, that I seem helpless and in need of someone to take care of me. That is never a great feeling as an adult. I’m not a small child, but sometimes dealing with doctors makes me feel that way.
It is a common thought that all little girls want to be princesses, but that has never been my goal. This was true when I was a small child, when I snuck coffee as I sat reading Shakespeare. I wanted coffee over soda! I also dropped out of ballet classes right before the recital in order to avoid wearing a tutu.
But in spite of my childhood oddities, I still feel that I have been fawned over as though I was perpetually a small child dressed in a princess costume. There are certain things that lead to my “small child” persona. First, in my family and amongst most of my friends, I am the youngest. I was two years advanced in school, so I was always the young one tagging along or needing rides home from basketball games and parties. My high school best friend is about 6 feet tall, so I was also the very short one, as I’m 5’5 on a good day. When I went to college, I was too young to live in the dorms.
Despite all of this, I’m rough and tumble—in my mind, anyway. Yet I’ve consistently been treated as fragile and delicate, and I realize to some extent this has to do with my health. I had been able to keep up with my peers fairly well throughout high school. College was more difficult, but I was still a busy bee. One semester, I even took 31 credits. I know, that’s crazy.
When I was 19, everything started to change for me. I’d already experienced a few blood clots at this point, I had anemia, and I had grip-strength issues in my hand. It took a few specialist consults to find out that I had herniated discs in my neck while in an African dance class. I was in a great deal of pain.
I had a museum internship at that time, and part of the rules for working at the museum was that you were not allowed to take any pain medication while on the job. I would suffer through 8-hour days, then go to a theatre class, where I sat for three hours watching a local play. It was torture because sitting is bad for an already hurting back.
A few weeks later, herniated discs were diagnosed in my lower back. Just day-to-day living was a really awful experience for me. I couldn’t do laundry, I couldn’t put away dishes, I was on too much medication to drive myself anywhere, and even showering was a painful chore. It was at this point that it was clear I needed to apply for Supplemental Security Income (SSI), a program that offers benefits to disabled adults and kids. I hated the paperwork. I hated the entire process. I was denied twice, and then I gave up. I wanted nothing to do with the process because I felt having to even think about the actual state of my health was too miserable.
It wasn’t until almost two years ago that I realized I needed to get my act together. The hospitalizations had increased in frequency, I had been diagnosed with adrenal insufficiency, and I was receiving IVIG for immune issues. I made a very thorough list of every appointment, doctor visit, and test that was lab or otherwise. Overall, it equaled one third of an entire year. I was finally approved for SSI. It was a very exciting moment for me, but at the same time, a sad one. I was 23 at the time, and I was physically incapable of working.
I’m admitting all of this because, in a way, it feels shameful to me. I’m young; I should be able to work. While I know it was an absolutely necessary route for me to go, and I’m sure there are many other young chronically ill individuals like me who also are on SSI for a variety of health reasons, nothing is worse than when someone asks you what you do with your life. I had someone ask me on a date what my yearly income was. That was obviously rude, but even when the questions seem harmless, I have to spend time trying to talk around the fact that I don’t have a place of employment. I do volunteer, though, when I can. That lowers the shame factor for me. It gives me something to say besides: “I read a book today.” My job really is to take care of myself and my health.
Lately I’ve been bridging into helping out my mom, too. My mom had to have rotator cuff surgery last fall, and it was on her dominant arm. After that kind of surgery, you pretty much need help with everything. This meant my mom couldn’t do any driving whatsoever. My dad is out of town a lot for work, and even though he made sure to stay in the area, he works long hours and couldn’t help much. My sister is also busy with her own life. I only started driving again in April, so driving every day and all over was definitely a different experience for me.
On top of this, my mom unfortunately developed complications in the form of a nerve condition called Reflex Sympathetic Dystrophy. This meant more doctor appointments, more tests, and even a very scary trip to the emergency room to make sure she didn’t have a blood clot because her arm was purple. During that ER visit, I was supposed to go to a concert by The Lumineers, a band I happen to love, and I gave that up to make sure the mom I love and appreciate was taken care of.
The one fortunate point in all of this was that we had maid service come on Fridays to clean. As it stood, I was getting my mom and myself ready for the day, taking care of my two dogs, cooking, doing laundry and dishes, driving to my own appointments and taking my mom to hers, grocery shopping (originally assigned to my dad, but he brought home snacks), and taking out the trash. When my mom got a little grumpy from pain, I’d quickly run out to get her flowers or her favorite food.
I know most of you household-types are thinking that this is the usual, everyday sort of thing. Deal with it, Sami! But some of these tasks I hadn’t really been partaking in, as my left arm is very sensitive to lifting anything since the blood clots began. It becomes very painful. I now realize that my future household must have dishes on a lower shelf.
The week before my mom’s surgery, we had my six-year-old niece around while my sister and her husband were on vacation. A few weeks earlier, I’d been the only one at home, and things went smoothly. I’m kind of great at being by myself. Only one bag of garbage in a full week. Dishes hardly piled up. Now, I went straight from child care to elder care (sorry, Mom).
I didn’t want my mom to know I was struggling. For whatever reason, I was convinced that if I couldn’t perfectly take care of my mom and everything around the house, then I would never be able to. I thought it would mean that I would never make a good wife or a good mother, and I get now that this rationale is so silly. But that’s what was going through my mind.
I didn’t break, but my body sure did. After a week straight of epic migraines, I had a meltdown. I cried and said something along the lines of, “I’m so tired. I need help.” I also found out that week that I had bronchitis, and I ended up needing antibiotics.
I explained to my mom how I thought my exhaustion meant I was going to be terrible at being a future wife and mom with all of my health issues. She reassured me that people don’t just wake up with a 6 year old and a parent to care for. Thank goodness, because that would be terrifying! Apparently, I was doing a pretty good job.
I know now that I’m much more capable than I give myself credit for. My health may get in the way at times, but those are the moments that I’ll need to ask for a little help. Asking for help is never a weak thing to do.
I may not be able to work right now, and some things around the house may be too much of a challenge. But I’ve grown beyond the small child princess into a somewhat “haphazardous” superhero—one with great cookie-baking and musical playlist-compiling skills. Now that is nothing to be ashamed of.