Fight. Be a fighter. This expression is used a lot in our culture. We talk about fighting for rights, fighting for your dream, fighting institutions, and, even, fighting illnesses. While the same word is used, the action itself looks very different in each of its uses.
I call myself a Spoonie Warrior, so obviously I believe that I’m fighting as well. But what does it mean for me to fight my illnesses? What exactly does this fighting look like?
The two main illnesses that have rendered me disabled are Ehlers Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS). I have many other illnesses that stem from those two and have their own “syndrome” titles, but these two are the biggest umbrellas. And neither of them have a cure.
For some illnesses and diseases, it’s easy to see how someone is fighting. Mind you, I am not saying that the fight is easier, it’s just more clear cut how the fighting is done. There’s a diagnosis and a cure. The cure is the tool of the fight. It could be a surgery or a medicine or something similar. But the fight has a clear beginning, middle, and end.
For other illnesses and diseases, the fight isn’t so clear cut. It’s messy, it’s non-linear, and it’s poorly defined. Even if there is a cure, it isn’t always cut and dry. Sometimes it’s like a roll of the dice and you never know if you’ll be the lucky winner or not.
As I mentioned earlier, my illnesses currently do not have a cure. One way that people fight, is by fighting for research to be done to hopefully find a cure. People fight with fundraisers and conferences, trying to connect those with money to those with the know-how so that they can work together to find a cure.
But that fight feels disconnected from me. That fight doesn’t represent what my daily life is like. It’s an important fight, yes. But when I say that I am a fighter, it’s not that fight I’m referring to. While there are lots of ways that I fight every single day of my life, there are 5 main ways that I can pinpoint and discuss.
One way I fight is through the use of medication. Lots and lots of medication. You would probably be surprised how many medications I have to take on a daily basis just to be able to function somewhat well. Our medicine cabinet at home looks like we’re trying to start our own pharmacy, or stockpiling for the zombie apocalypse. But, each medicine does something specific that the others don’t do. They work together like a well-oiled machine. Removing one proves to be detrimental to my well-being.
But there’s another side of the medication fight. There’s an inner and outer struggle over how many medications I take. There’s a guilt that comes with being medicated. Believe me, if I could go all natural, I would. If I could heal myself with just my diet, I would. I do use diet to help ease certain symptoms, but unfortunately eating a handful of cashews a day is not enough to fight my PTSD and get me off of my anti-depressants. No amount of kale or leafy greens will keep my heart rate and blood pressure in check. And I have tried eating an apple a day every day, but it just doesn’t seem to keep the doctor away for me.
I feel guilty for taking so many medications because there are a lot of people who bash medicines. Who tell those of us that use medicines, that our medicines are only making us sicker, making us require more medicines, and that if we would only eat such and such root then all our problems will be solved. I can’t tell you how many times I have had a discussion with a person who knows nothing about my illness but feels that they know enough to tell me that my doctors are poisoning me and I would get better if I was willing to try harder.
Or worse, they implicate that I am the reason that I am still sick because I’m too lazy to try their miracle cure. Just as our culture likes to victim blame, they like to patient blame as well. According to memes, posts, rants, and conversations I’ve had with various people, I wouldn’t be disabled if I just tried harder, if I exercised more, if I ate the right foods, if I prayed more, if I went to the right church, if I did such and such and on and on. Having to face the reality of being disabled is crushing enough without being told that it’s all your fault for being that way.
Now, I’m not knocking natural medicines, or eating healthy, or prayer. As I said before, if I could go without medicines, I would. Trust me, I don’t like spending a small fortune each month at the pharmacy, but I have tried going without and it doesn’t work for me, at all. I have been shocked by the fact that I not only have to wrestle with the difficulties of taking so many medications on a personal level, but that I also have had to justify and defend my use of them to people who have no business questioning my treatment anyway.
I go to so many different doctors. I have a primary care physician, who basically just serves as a referral vehicle since there isn’t much that she is able to treat herself. I have a cardiologist/electrophysiologist, rheumotologist, neurologist, psychologist, psychiatrist, gastroenterologist, and a physical therapist. I wish that there could be just one doctor that I could see who could treat all of my illnesses, but that is not how medicine is practiced. My illnesses affect every system, therefore I see a specialist for each system to help me keep them all in check.
Each new doctor brings with it its own difficulties and fights. I have to fight with insurance to get them to cover it, because why should a 31 year old woman have to see so many specialists? Then I have the anxiety of meeting the new doctor. Will they understand my illnesses? If they don’t understand them, will they be willing to research them and learn more? Or will they be one of the many doctors that dismisses my illnesses as being all in my head since they have never heard of them?
Finding supportive doctors is a must when you have a rare (or rarely understood) illness. They are an incredibly important tool for fighting my illnesses. However, there are also some not-so-understanding medical professionals out there. They become a fight of their own.
The decision of whether or not to go to the ER is always a difficult one for me since I often end up leaving feeling worse than when I came in thanks to the stress and anxiety the ill-informed doctors and nurses put on me. I’ve had nurses insinuate that I’m a hypochondriac because I come in using the actual medical terms for my maladies, assuming I must have looked up the names on WebMD instead of being given the names in a diagnosis.
I’m not knocking anyone in the medical profession. I have great respect for people who dedicate their lives to saving the lives of others. But the stigma against people with invisible illnesses and/or disabilities often bleeds into the medical field as well. I have to fight to be taken seriously, as many professionals dismiss any symptoms they don’t understand as being “anxiety.” Anxiety is a serious issue, but it has become a kind of catch-all diagnosis for illnesses that aren’t well understood.
The fact that my illnesses aren’t well understood, can also lead to doctors or nurses with good intentions giving me the wrong treatment. I was hospitalized for bradycardia last summer and while I was there the doctor stopped the nurses from giving me one of my regular medications because of my low blood pressure. I tried to explain that I always have low blood pressure but that the medicine was necessary to stop my adrenaline surges. I had one of my worst surges the day I was finally released because I had been without my medicine all weekend.
They also fed me a “cardiac friendly” diet while I was there, which means very little salt. I am on a special diet that requires a lot of salt. I mean, A LOT! No matter how much I insisted, since they weren’t able to reach my regular cardiologist, they refused to alter the diet. I left the hospital that weekend feeling much worse than I did when I got there.
Fighting to be heard by people in the medical field was not something I expected to encounter in my fight against my illnesses.
3. Being Active
Well, really I mean being as active as possible whenever it’s possible, but “being active” just sounds better as a section header.
Being active for me now, looks very different than what I would have called being active before becoming disabled. Before December of 2015, I was highly active. I was notorious for taking on too much work, then working myself ragged to still get it all done. I was full of energy. I danced and sang wherever I was, no matter who was looking. I bounced around, often literally, from activity to activity. Radiating energy was kinda my thing.
Now, I get dizzy from walking down the drive to get the mail. In fact, as I write this I’m trying to calm my racing heart and feel a headache coming on because I had to mop up a water spill on the floor. I can no longer bounce from activity to activity, I can no longer bounce period, really. I can’t remember the last time I danced, a realization that immediately has tears prickling behind my eyelids.
When compared to how active I used to be, I don’t seem very active at all, actually. But that’s why I try really hard not to compare my old self with my new self. As soon as I do, I start to spiral into an aching sadness, a mourning of who I used to be and all that I’d hoped to become. So, let’s not talk about that right now. *sniff sniff* We can save that for another post.
There was a period of time, after I first got POTS, when I wouldn’t do much of anything at all. I was afraid of draining all of my resources. But now, I try to use my “spoons” (or energy) in ways that are worth it. Because, honestly, somethings are worth the flare.
Picking up my daughter to comfort her when she’s hurt is worth the dizziness I feel later. Spending time with friends and family on special occasions is worth the day or two of rest I need after. Supporting my students by watching their performances or attending their events is worth the spoons it costs. I mean, what’s the point of having spoons at all if I can’t use them when I need them?
Then there are days when I want nothing more than to be with my daughter playing, but I can’t get out of bed. When I want to see my friends or family, but the fatigue is too overwhelming. When I want to go to the activity or event we planned well in advance, but the pain is too strong. There are days when I listen to Harper and Matt playing and laughing in the living room and I would give anything to be where they are, to be laughing and playing along.
My illnesses don’t care how much I want to be who I was before. They don’t care how infuriating it is to feel like I’m missing out on so much of my daughter’s childhood. They don’t care that I feel I’m not even half as good of a teacher as I used to be. They don’t care, because they are illnesses. They exist in me whether I want them there or not and no amount of wishing or positive thinking will change that.
So, I fight for those moments when I can be there, no matter how few and far between they may be. I fight to create new ways to be with my daughter, to just be present with her whenever I can. I fight to give all that I can, even if it’s only a small fraction of what I used to be able to give. And I fight to accept my new limits, no matter how hard that is to do.
Anyone who knows me, knows that I’ve never had an issue with talking. However, since becoming disabled, I’ve changed the way I talk and what I talk about. Chances are, if you are reading this article or have read anything else on my site, you know one of the things I like to talk about: my illnesses.
If you haven’t read my article Living Life Invisible then I suggest using that link to click on over and read it now. Well, maybe wait until you finish this one first. As I explain in that article, I like to talk about my illnesses because they are a huge part of my life. They impact pretty much everything I do. They may not define who I am, but they certainly are part of me, so to keep silent about them is to deny part of myself.
I also talk about them to normalize it. I don’t think that chronic illnesses are something dirty or shameful, yet they are often treated that way. It’s seen as taboo to talk about them or shine light on them. Or the person doing the talking is thought to just be seeking attention or sympathy. I assure you, I am not seeking attention or sympathy by sharing my struggles.
I share my struggles because I know that I’m not the only one going through this. I’m not the only one who feels this way. I’m not the only one who struggles the way I struggle. I speak up for those who can’t, or aren’t ready, to speak up for themselves.
It may sound cheesy, but I think there’s something to that whole “love is all you need” thing. Clearly, it isn’t all I need, we’ve already covered the whole doctors and medicine thing, but it is certainly an important part of my needs. My illnesses have shown me just how strong and powerful love truly is.
On the worst of the worst of my days, the love I get from my partner, my daughter, our family, and my friends keep me going. On days when I can’t find the strength to fight, they fight for me. My partner in life, Matt, researches my illnesses, spends hours scouring the internet for recipes I can actually eat, drives me to and from every one of my doctor’s appointments, and never ceases to amaze me with how understanding he can be.
Why does he do this? According to him, it’s because he loves me and would never even think for a second to do any different. And he’s not the only one. I have been overwhelmed by the kindness that I have been shown by so many people that I love. Whether it’s my dad texting every day to see how I’m feeling, my best friend sending me funny pictures to make me laugh, my daughter trying to “help” push my wheelchair, my students mailing me a get well soon card, a friend driving over to bring me dinner, a family member playing detective in the grocery store to find things that I can eat so that I don’t feel sick after dinner, or the countless other amazing and wonderful things that the wonderful people in my life have done to show how much they love and care about me.
My love for others helps me to fight as well. My love for my daughter helps shake me out of my worst days. It helps to warm my heart when I’m in the depths of my sadness. She helps me to be stronger, because I want to show her what strength looks like. My love for Matt helps me to work past my anxieties, to process trauma that I’ve kept hidden for a long time, and to be more forgiving of myself.
Trials in life can often make people angry and bitter. Believe me, I definitely have my moments when I am angry. I get angry at the universe for making me this way, angry at the world for not understanding, and angry at myself for not being better. But, I don’t let that anger consume me.
It’s the love of others, and my love for them, that keeps the anger from rising up and taking over. This love is the only thing that makes it possible for me to fight in all those other ways that I’ve mentioned. It reminds me of what is good in this world, of what is worth fighting for.
It is love that makes me stronger. It gives me hope even on the darkest of my days. It shows me that I am so much more than my ability to dance through the halls or sing at the top of my lungs. And, it helps me to remember that no matter how insignificant I may feel, I still matter to some, and that means the world to me.