4 Things That Are Just as Important to Learn as Your Diagnosis

I struggled with bad knees in junior high and had an incredible amount of fluid retention/inflammation issues. Around my freshman year of high school, I started struggling with pain and inflammation in all four of my limbs. Day after day I would push through school and chores, then would stay up long enough to do homework or (in most cases) fall asleep. I was physically and mentally exhausted. I was typically told the same things: “You just stayed up too late last night,” “You’re probably just growing still,” “If I can do X, than so can you.” And so I would. I’d prove I could do X. I’d go through the same motions, and every day felt either the same or worse.

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Sometimes the pain lessened but never went away, and it always came back. I finally reached a point that winter where I broke down. I saw a handful of doctors, who mostly doubted and shoved me away. The last one I went to dug a little, did some physical pressure tests, slapped “fibromyalgia” on me, prescribed me Lyrica and prescription Tylenol and sent me out.

The 14-year-old, naive part of me felt relieved that someone gave me an answer, but as time went on, it was the same song and dance. I feared losing out on opportunities, jobs, etc. any moment I seemed weak, so I did what anyone else would do: I became a master of hiding my pain. I smiled when I didn’t want to. I practically coined the phrase, “I’m all right.” It seemed like I lived two separate lives; when I let it show and when I didn’t.  

I’ve continued to be in and out of doctor’s offices and urgent care, met many naturopaths/rheumotologists/specialists along the way who put the official “lupus” label on me and have put me through everything from steroids and electrode therapy to plasmapheresis and chemotherapy, with little to show for it outside of outstanding bills and horrific side effects. 

After years of appointments, prescriptions, physical therapy, needles, agony and frustration, I decided to take a break — to work on appreciating the body I’ve been given… knowing that this means just “getting by.” My “ICE (in case of emergency) pack” is my security blanket. I live on (literal) ice packs and a TENS unit. 

Though I’ve put myself through much trial and error with not much to show, I’ve learned a few things that are just as important as finding the “answer.”

1. Time: Many will tell you that we don’t have much time, so it almost becomes a race for those with an invisible illness to find the right answer to their health to try to “fix” themselves and have a happy life… and when they reach a block, they turn on themselves. They forget that time doesn’t stop while you search for answers. Though time may seem against us, time is also here and now. Let it be your friend. Appreciate every morning you are able to wake and make it through the day. As it currently stands, my boyfriend has to physically lift me out of bed five to six days of the week, the seventh day is me being stubborn and crawling up when he’s away. He helps me up and down stairs and into his truck when I “need it”, and walks behind me for protection when I “don’t.” The idea is that no matter how — I’m doing it on my time. That’s what’s important now more than anything else.

2. Cherishing Relationships: Over the years, I had close friends that placed boyfriends and accomplishments over their friendship with me and I never realized it until later down the road. I cherished my friendships with them and would try to go out of my way often to surprise visit with gift baskets, personalized notes when they had bad days, etc. Over the years I started seeing them less and less as I struggled to get out of the house outside of working. I started seeing that my friendship was convenient and as it was growing less convenient, they grew farther apart. To this day, I don’t know if they ever believed the struggles I tried to share vulnerably while they sat on their phones texting their crushes and asking questions I already answered. I’ve learned over the years of growing apart that several have also been diagnosed with some sort of invisible illness and as much as it hurts me, I pray for them from a distance. I finally recognized how toxic it was for me to have one-sided friendships, to always be dishing out what I didn’t have to pass. 

On the other end of the spectrum, I’ve met people over the years who’ve never felt the need for an explanation from me, who offer helping hands even when I say I don’t need them, who offer a listening ear even if they feel they can’t help. With many cases in autoimmunity, you’re known to “raincheck” and need people who are able to see your situation and understand when you need to stay home. To say I’ve been blessed with this is an understatement.

3. Value: I always put a lot of pressure on myself due to my fear of not being “enough.” Many of my old employers will tell you that I was a workhorse, that I always proved myself and had I not shared my health history, none would have known different. The exception to this was a job I left for medical leave. It was a small crew with little money to go around so there was simply too much on everyone’s plate. I was petrified to take any time off because it was always followed with the phrase (you guessed it) “But you look fine.” It took my breaking point and official leave for my employer to contact me within a few weeks, admitting that my dedication and effort (despite my health background) had been greatly taken for granted and wanted me back at my earliest availability. I saw how unappreciated I was and moved on. Had I not gained a backbone and sought my value for what it was, I would have let them get under my skin and make me believe illness kept me from being successful, when that wasn’t the case at all. 

Know to trust your boundaries, but also to trust your value when someone is challenging it. In many cases, you’ll find that you may be stronger than the one challenging you.

4. Loving Yourself: I’ve spent many years in a love-hate relationship with myself. I’ve had great days where I can come home laughing about my day, and many days where I’m crying to sleep in pain, physical and emotional. Where I fell short was where I tried too hard to find myself when I’ve been here all along, just in a chapter. Like a book, there are good and bad chapters throughout the story, but as a whole it can be your favorite book. The good chapters are what keep you motivated. The bad chapters are the ones that make you feel something, the life lessons, so that when a good chapter follows, it makes you that much more appreciative; that much more knowledgeable; that much more loving and alive. The good and bad chapters are all a part of make you who you are. There are many, many chapters left to your story and nobody can promise that they’ll all be great ones — but they’re there. And they’re yours to write.

I still work full time, I still play music at my leisure, I still photograph, I still push myself to accomplish — to succeed. I still spend what time I’m comfortable with in the company of who I love. I’m still here, as are you. For my fellow spoonies and of the like, my heart is with you. Be proud of what you’re capable of. For looking fine when you aren’t, and fighting when you don’t want to.