If you follow me on social media or know me in some capacity, you may have heard me mention chronic invisible illness and pain. This year marks a decade since my first real hospital visit (aside from appendicitis in 6th grade) and subsequent first diagnosis of my first autoimmune disease. That’s right, I hit the jackpot and have more than one. And no, that luck hasn’t reached any other aspect of my life, yet.
A chronic illness, for those unfamiliar with the term, is a disease or disorder that may develop slowly, but is prolonged in duration, often lasting the remainder of the individual’s lifetime; they are rarely cured completely and usually involve a life of attempting to maintain a livable baseline through various treatments.
As for an invisible illness, it’s a little something like this:
One day I stumbled upon this post, which the author posted in support of Invisible Illness Awareness week where she answered 30 things you may not know about her invisible illness. It was a succinct and enlightening overview of what living with Lyme disease has been like for her. Having been unsure how to convey some part of my own experiences living with chronic invisible illnesses, I thought it might be a decent approach to use myself. There’s not a lot of detail, but it hits some highlights. The original poster of the questions is none other than Christin Miserandino , the founder of ButYouDontLookSick.com and the use of Spoon Theory to describe living with chronic invisible illness (you may have heard me mention spoons before.)
Here are 28 things you may not know about my chronic invisible illnesses.
- The illness I live with is: I have Lupus (SLE), APS (antiphospholipid antibody syndrome) with a history of blood clots including a pulmonary embolism and 6 TIA’s, I also have Fibromyalgia, and often deal with migraines, arthritis, a history of SVT, and the symptoms and issues those bring with them.
- I was diagnosed with it in the year: 2006 was when we found I had APS and an autoimmune disease considered most likely Lupus; this was after a pulmonary embolism was luckily caught and a ton of tests were done, I was 17. I was officially diagnosed with Lupus in 2008, and in my early 20’s I was diagnosed with Fibromyalgia and arthritis
- I have had symptoms since: at least 16 years old, though my mother believes I’ve shown some most of my life
- The biggest adjustment I’ve had to make is: I’m still learning to live with my limitations. After 10 years I’m still not used to the fact that one morning I can get up and run errands or do some work or activity outside of my home for a few hours, and others I can barely get out of bed and move to my chair or couch due to pain, migraine, or fatigue. Either that or adjusting to taking medicine…I’ve had to start taking more medicine than I ever wanted. I’ve always hated taking pills, but now I have to, because at least they’re better than the hospital or another stroke or something worse, or shots every 12 hours (and these aren’t insulin needles).
- Most people assume: Far too many things….that if you know one person with Lupus/APS/Fibro, you’ve heard all there is to know, that if you don’t look like a specific individual’s idea of sick then you must not be; a lot of this goes along with age, too. There’s a prevailing, possibly subconscious, idea that if you’re a certain age, you have the ability to move past or somehow grow out of whatever malady is slowing things down and making things difficult for you, which couldn’t be farther from the truth.
- The hardest part about mornings are: Never knowing what I’m going to wake up to, or when. Every day is a dice roll, and sometimes it’s by the hour.
- My favorite guilty pleasure is: Probably eating French fries. It’s about the only fried anything I really eat anymore besides the occasional cheese stick. In the arduous attempt to eat better for myself, potatoes don’t factor in as much as I currently succumb to the desire.
- A gadget I couldn’t live without is: I really don’t know. Hard for me to think of anything I use as a gadget in this way. I guess heating pads in general, the microwave ones are nice. Maybe my Brita water filter, since I don’t have to worry about buying or carrying water anymore, or pressure pointer for knots in my back…
- The hardest part about nights are: Getting to sleep, staying asleep, finding a comfortable position to sleep in…it’s also more difficult to reach someone (and I feel far more guilty about asking for help) if there’s a new, strange, or unnerving problem and I am not sure what I should do, or feel that someone else should be aware.
- Each day I take: Anywhere between 2 and 10 pills. My Coumadin dose fluctuates, and many medicines are for as needed, such as medicine for my migraines, or a muscle relaxer for my back, etc. I need to get better about taking vitamins, like vitamin D especially since I have a deficiency (being allergic to the sun and all, because I’m a vampire). Multivitamins are too big.
- Regarding alternative treatments I: I prefer alternative treatments to most any other. Though, I believe it’s all a matter of finding what works for you and your specific needs. I have had acupuncture before, for instance, and it seriously helped me at the time. Then again, it would work better if I used some of them more, such as soaking in a bath for 10-15 minutes every day or so to help arthritis.
- Regarding working and career: I had hopes of getting through enough school to be a counselor of some kind, meaning I would need at least a Master’s Degree. It took me 9 years to earn my Bachelor’s degree, and if you only knew the half of what it took to get there…Needless to say, I’ve had a lot of issues with jobs. At the moment, I’m doing all I can to make this writing thing happen because I can do it at home, or hospital, or elsewhere. I can work at my own pace and in as much comfort as I can find. It doesn’t hurt that I’ve always had a love for books and writing, or having written as Dorothy Parker aptly describes. So here I am, trying to carve out whatever path I can.
- People would be surprised to know: How clueless some doctors are and how often you’re prescribed a drug for reasons other than what is best suited for you (some doctors tend to go with companies they get kickbacks or other fringe benefits from. Ever seen a suited person carrying drinks or bags, or rolling a cooler into a doctor’s office? free lunch.) Also, how upset some doctors get because you came prepared with questions and information that they didn’t hand to you and that conflicts or contradicts them and they weren’t expecting, or if you seem to know more about something than they do. You can say no to your doctor, you can ask questions, refuse or attempt to request tests.
- The hardest thing to accept about my new reality has been: All of the things I felt I should have been capable of doing and accomplishing, dealing with limitations and outcomes. Watching my younger sister grow up to live out a life that could have just as easily been mine too can be difficult, to say the least. She just graduated and received her Master’s in Social Work, she received her Bachelor’s Degree in Psychology (same as me) the year before I did, but after the usual four years, while raising a daughter, and she will be having my second niece within the next month. Most people imagine what their life could have been like, I live alongside a demonstration. Don’t get me wrong, I’m truly ecstatic for and incredibly proud of my sister and all she tackles because she really is amazing, and I wouldn’t change things. But that doesn’t make it any easier to accept some of the changes and choices I’ve had to deal with in my own life. For the most part I have accepted it, but sometimes I get sucker punched by it.
- Something I never thought I could do with my illness that I did was: I am able to horseback ride, though it’s at great cost. I’ve only been once in a very long time.
- The commercials about my illness: I have no idea, I don’t have cable so I have no idea what might be said in one, if there even is a commercial for some of them, like APS.
- Something I really miss doing since I was diagnosed is: Not having to worry about my energy, not just that day but the surrounding days.
- It was really hard to have to give up: My independence, having to need other people and ask for help. I prefer to do things on my own, so the fact that since my early 20’s I’ve needed help with taking the trash out, or needing help being taken to (or deciding to go to) a hospital…so many things you don’t even realize are related to that feeling of independence. I won’t lie, it can be a bitter pill at times.
- A new hobby I have taken up since my diagnosis is: I’ve taken up and shifted from hobby to hobby. I taught myself to knit and crochet after my TIA’s, in large part to help the grip and dexterity of my left hand. I’ve taught myself to make different kinds of jewelry as well, but my hands don’t always cooperate.
- If I could have one day of feeling normal again I would: I don’t like questions like this, but I guess I would probably go horseback riding, maybe dancing, give my niece the piggyback ride of her life, maybe I’d rearrange or clean a room then cook something and clean the dishes that same day, because I could.
- My illness has taught me: It’s still teaching me to be kinder to myself. I’m still learning. I become frustrated with the things I’m not able to do (or able to do quickly enough for my tastes) and all that comes from those limitations, so sometimes I push myself too far. I am a person that relishes the small things in life, but I rarely seem to appreciate the things that I accomplish, whatever scale they’re on. I have been using words like “at least” to describe what I’ve accomplished in a day instead of saying “I have”, “I did”, and letting myself be proud of that. I haven’t yet learned to set my expectations to suit my limitations. Maybe I never will, because it feels like letting the illness run my life. Still, I’m making some progress in giving myself a break.
- Want to know a secret? I hate cancer for more than just the fact that it’s cancer and the number of lives it plows through and destroys, including friends and family. I hate how much easier it is for cancer to pull in money for research compared to illnesses like Lupus or APS because it’s something people more readily understand and can visualize, making them more empathetic and willing to help. This is all especially true when so little has been readily offered as a real cure instead of continuing to treat the symptoms, and that’s true of most illnesses these days. There’s more money in treating than in curing, and that’s a huge problem.
- But I love it when people: I love when someone does research and then asks me questions. Often it’s hard for people to differentiate between symptoms or events that happen with some, most, all, or just my personal experience. I don’t always have the energy to go into it all, but I prefer people to ask questions than to continue with an assumption. Someone having done some research before asking me a question, though, means not only is it likely to be a more specific and thoughtful question, but I don’t have to use up time and energy to give a basic lesson first before answering the question.
- My favorite motto, scripture, quote that gets me through tough times is: I don’t have one. When things are really bad, there’s no one motto, quote, or anything else that is going to get me through. Most things sound like cliché platitudes when things are so tough I’ve reached occasional cynicism. What I tell myself changes, but the basic idea is the same: keep going, focus on changing what I can, take care of myself including breaks when I don’t feel I deserve them. Rest, refocus, keep kicking back.
- When someone is diagnosed I’d like to tell them: Do the research, don’t just accept what every doctor tells you as law or the end all. For the illnesses I have, a lot is uncertain and more research needs to be done. If I had a dollar for every time I’ve had to explain to a doctor was APS is, I might be able to pay one of the hospital bills…But anyway. I would also tell them that they know their body better than anyone else ever will, including a doctor, and not to let a doctor pressure them into something that doesn’t make sense or feel right to you. Being scared is okay, but you need to learn to work through that and make the best decisions you can for you. Be sure to ask questions.
- Something that has surprised me about living with an illness is: The ignorance and prevalence of prejudice when it comes to having, not only an invisible illness, but one from a difficult age. When you’re 18 and look younger, able to stand and presumably walk without assistance, and have no visual deformity, you don’t fit what disabled is “supposed” to look like to most people. Judges, strangers, even sometimes friends or family don’t understand because you don’t look sick to them. Sometimes they knew you before, what you were able to do, and don’t understand why you look the same but can’t do the same things. Not everyone is understanding.
- The nicest thing someone did for me when I wasn’t feeling well was: Any number of things big and small….there isn’t one ultimate act because each one of them is felt and appreciated by me. My mother has come over to clean my apartment, carried bags, run errands. I’ve had help with taking the trash out, with cooking, dish cleaning. I had people be understanding and forgiving of missed events or canceled plans. I could go on, but I couldn’t say one act was the nicest because in the moment, each is huge.
- The fact that you read this list makes me feel: Grateful, hopeful, cared about, and curious.
Do you or someone you know live with a chronic or invisible illness? Please feel free to fill out and share your own answers to some of these.