If you told me fifteen years ago that one day I’d be smoking weed and watching movies all day, and I’d be upset about that fact, I wouldn’t have believed you. However I suppose even in my stoner hayday if you told me that was the only thing I could do, I’d have considered it for a minute, but eventually declined.
I’ve fallen ill, I guess that’s the word — ill. I’ve fallen worthless is what it feels like. Not that I’m not fabulous on the inside still, I’m awesome, but my body has taken to no longer working, so the fab’s pretty hard to show.
It started out with getting what I thought was the flu a few times a year, in 2009. The number of “flus” crept up, and up, and up. This fall it never left, and a whole miserable host of symptoms had piled on by then, it’s truly been a nightmare. It seems to be something with my nervous system, I’m currently awaiting the MRI results of my brain. If you ever wonder how to make time cease to move… oy!
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Health-wise, a good day is where I’m able to cook a meal and do some dishes, or draw or write, for an hour or two. Many days all I can do is just lie here — as sound is irritating, and my arms are too weak to hold a book. I’ve taken a liking to bird watching. I think I’ll keep it.
This has been such a bizarre experience, but I’ve learned some things along this journey…
1. You have to be your own advocate and medical researcher
Which can be really difficult when it feels like every single friggin’ thing in your body is malfunctioning. But it’s not actually every single thing, it’s tons of individual things, and we are the only ones who have access to exactly what those symptoms are. Make lists. Research. Don’t rely on one source of information, always cross-check. Bring up all possibilities with your doctor. If they poo-poo ideas for no good reason, find a new doctor.
2. It’s stupid that we have to pick between MD’s and naturopaths
I’ve picked one or the other over and over and neither way has worked — I think they need to be a team. Our health system is bonkers. I’m trying for a naturopath as well as a specialist this time.
3. People will have opinions on your condition
Projection is when we subconsciously take our experiences and project them onto others’, assuming their experiences and motivations are the same as our own. People will assume your illness is the same as theirs, people will think you’re faking, people will think you’re terminal. Unless what they are saying is along the lines of, “You are such a badass, I’m sure you’ll beat this, how can I help?”, or helpful and pertinent suggestions, just ignore them. They mostly mean well, but they can be really distracting. Eyes on the prize.
4. Fake it ’till you make it! Unless you’re at the doctor…
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I’ve found that trying to pretend I feel good when I have to leave the house is helpful. It can distract me from my symptoms for short periods, makes me feel emotionally strong, and it feels better than the alternative. (I am of the smiley and friendly variety and not accustomed to scowling in public. People scowl back!)
However, I was doing this fake act at the doctor, which muddied the waters. I kept wondering why they didn’t seem to be listening to my words: “this has completely stolen my life,” “this is very urgent,” “extreme pain.” I felt like I wasn’t being taken seriously at all.
As things have progressed my ability to “fake it” is disappearing. And now my docs are taking me seriously! Jeebus. I’m real in front of doctors now. Even though there’s a bit of me that’s incredibly desirous of pleasant social interactions — that’s not the time or place. Save it for the cab, and be real with the doc.
5. But don’t cry
They’ll think you’re hysterical and call “anxiety issues”. Unless you’re a man. Then your condition must be really bad.
6. You’ll learn about your friendships
I thought I had a great crew of friends in Portland, people came to my parties, and I had more invites than energy to attend them. Of that big ol’ gaggle of peeps… know how many I’ve seen since it got bad three months ago? TWO.
I’m not sure what to do about this. Maybe I was spreading myself too thin friend-wise, and not putting in enough time? Or is this just what happens when we get older, and lives get crazier? One thing’s for sure, I’m going to take finding a partner much more seriously once this is over…
7. Solitude
As a single person living alone, I’ve been all by myself like 98% of the time since it got bad. However, being a single person living alone is my doing — I like solitude. I don’t like to be around people when I’m miserable and cranky. (See: #4, also likely contributor to #6.) This time has really cemented my relationship with me; I know myself really fucking well, and I love myself dearly. No matter what that MRI says, I think that that fact is going to help me get better.
What are the lessons you’ve learned from being chronically ill, or from living with a chronically ill person?
From one spoonie to another, solidarity 🙂 I hope you find answers and its curable and if it isn’t I hope you continue loving yourself and taking excellent care of yourself. Great article and so true about “Be real but not too real or else they think your hysterical”. Fuckers. No one who is ill should have to be an advocate for themselves but fuck, what other option is there? <3
It’s so true. You have to be both honestly miserable, and totally your most professional self to be taken seriously by doctors. It’s the most frustrating, awful thing, but since doctors only have about 5 minutes tops to talk to their patients, at least you don’t have to keep it up for long! I’ve advocated for my chronically ill husband, and we have to prep ourselves, take notes, and generally not be afraid to keep asking “quick questions” while the doctor is inching out the door. As for the 2 remaining friends…I don’t really think it’s your fault at all for “spreading thin.” Some people step up, some people run screaming in the other direction. It’s the nature of illness, and I think how scared our culture is of dealing with the real possibility that you could get sick or die at any time. They don’t want to deal, so they just don’t interact. Anyway, keep up all the hard work in getting yourself healthy again.
I also don’t know what the hell I have. They’ve diagnosed me with fibromyalgia, but I don’t have all the symptoms. I hope you feel better soon!
There’s over 200 common symptoms for fibro. Also insist that your doc use the 2010 definition and not the 2001.
I wrote this a couple months ago, and have since found out just nerve damage from severe b12 deficiency is the culprit! Before I (finally) got my diagnosis I was sure it was fibro, the pain was just like everyone on the internet said it felt like.
Have you gotten your b12 levels checked? (Or if it’s too expensive you can see if methylcobalamin helps! B vitamins are water soluble so you can’t do harm by trying, but don’t get cyanocobalamin, it has freakin’ cyanide in it and doesn’t help with neuro symptoms)
Wow, I’m so glad to hear you’re getting better. I have never had b12 mentioned to me, but I’ll look into it. Is it possible to be deficient if you’re not a vegetarian?
*–*
Oh god number 5. I have bowel trouble and every doctor and layperson has said my symptoms are because I’m stressed. I even got a consultation with a psychiatrist before I got referred to a gastro consultant (coincidentally, I go tomorrow). I had to prove I’m not depressed or stressed to be taken seriously. I really wish mid-30s white girl with gastrointestinal complaints didn’t default to mood disorders. Pretty sure if I didn’t have tits I’d have been diagnosed and treated years ago
I had similar issues. The doctors gave similar diagnoses, which was useless and frustrating. Eventually, on my own, I did an elimination diet and found that I had sensitivities to a host of common foods. Now that I avoid those foods, life is much better! I don’t know if this relates to what you are going through at all – and going through an elimination diet can be pretty miserable – but if the doctors continue to be unhelpful, that might be something to try.
I too was diagnosed with Fibro (like Heidi), but it’s so non-precise (i.e. maybe not legit – there’s no real test). I was ordered MRI’s and lots of blood tests, including the full Lyme Disease spectrum test (if you haven’t considered this, maybe give that a looksie, though insurance won’t cover it and it’s about $1200 down the drain if you don’t have it. I feel better knowing though.). Lyme is pretty intense and if you do some digging online, you’ll find that you don’t have to have knowingly been bitten by a tick. I never saw the tick that bit me – just the mark and “ring” on my back.
I feel you on this stuff. I have friends with chronic illness too, so we kind of “get” each other. There are a lot of auto-immune diseases out there too, some rarer than others, that can cause flu-like symptoms, chronic pain, and other reactions. Not sure what yours are, but consider googling. Sjogrens and Graves are pretty crazy.
Also, if you don’t have a cat, they can be great when your sick (if you’re not allergic, but there are hypo-allergenic cats too). Low maintenance and lots of cuddles. It’s a journey to try and reveal what’s ailing you, and sometimes you just want to give up (I have). Yoga and acupuncture have helped me immensely though. Chinese medicine is worth its weight.
Additionally, I recommend eating or vaping CBD instead of smoking Indica or Sativa. You get all the good stuff without the bad. And if you have anxiety, I’d stay away from Sativa altogether.
I also recommend natural detoxes (teas and supplements from dandelion, turmeric, milk thistle etc), mostly veggie diet, probiotics, and epsom salt baths. Good luck!
CBD has truly been a lifesaver! I got a tiny lil’ vape (Magic Flight) that I looooove. All the bodily benes without being too stony too function!
I was diagnosed with fibromyalgia and several other autoimmune disorders about a month ago after several years of pushing doctors for testing. It was incredibly frustrating but knowing what’s wrong and what I can do to feel better helped a lot. I completely agree with thinking that naturopaths and doctors need to work together! I have had some bad experiences when I tried to only see a naturopath type doctor (some of their methods went against the science of my disorders) or just specialists (advice that didn’t take into account my whole well-being) but when working with both I feel a lot better. I really hope you get your answer soon!!! That was the most difficult part in my experience. *hugs
I’m going to paste the same thing I said above about fibro, maybe it’ll help!
I wrote this a couple months ago, and have since found out just nerve damage from severe b12 deficiency is the culprit! Before I (finally) got my diagnosis I was sure it was fibro, the pain was just like everyone on the internet said it felt like.
Have you gotten your b12 levels checked? (Or if it’s too expensive you can see if methylcobalamin helps! B vitamins are water soluble so you can’t do harm by trying, but don’t get cyanocobalamin, it has freakin’ cyanide in it and doesn’t help with neuro symptoms)
Re: Friends. They may need to be invited. People get socially uncertain when it comes to any kind of illness. Is it contagious? Am I going to be irritating? A burden? Am I welcome?
I love this comment: ” If they poo-poo ideas for no good reason, find a new doctor.”
I also love the “fake it til you make it except with the doctor” advice. I had a lot of trouble with that when I first had serious problems with anxiety 10+ years ago (the advice applies equally well to mental illness, at least in my experience). I always felt functioning/okay/reasonable enough to have a conversation when in the doctor’s office, but then when I got home I was a complete mess. So even if I said to the doctor, “I’m so anxious that I can’t eat or sleep,” they still tended to read me as being better off then I actually was. It wasn’t even fully conscious on my part. So, yeah, watch those tendencies to act okay because they can carry through to your interactions with medical personnel, even when acting okay is not in your best interest.
Once I went too far in the other direction because I got frustrated with not getting enough help when I needed it . . . also a mistake.
Oh my gosh, YES. I went to a therapist for the first time last week and even though I voiced very serious concerns, she said, “so what are you here for? It seems like you’re doing fine now.”
Uuuuuuuughhhhhh
I’ve had that exact experience!
My husband is on treatment for aggressive recurrent cancer & I have fibro. We both have PTSD. Even with those diagnosed therapists & doctors have both been quick to dismiss things as “fine” because we/he/I held it together enough to communicate with them for 5 minutes. One Dr appt can be very draining that way but it’s a difficult thing to break yourself of. Fortunately our GP is the bees-knees (Thank you, Universe!) and he “handles” other specialists when they are refusing to listen.
What you say is so true! I am my own worst enemy. I’ll tell myself that it’s all in my head right up until the pain mounts to the involuntary utterances stage, and then I’ll tell myself I’m being a drama queen about it even though I can’t stop whimpering, moaning, and occasionally screaming. It’s like this programmed part that doesn’t even know me, just rides around in my head pretending to be me.
Except in my case friends don’t come around and help me because I don’t ask for help. I’m ashamed of burdening them, ashamed of existing, of having so little to offer to justify my life. Then I come to my senses and tell myself that’s nonsense. If I had no purpose why would I even be here? I exist, therefore I’m part of the larger plan. Being rendered utterly helpless gives you a lot of time to get mystical. Maybe that’s the one good thing that I can get out of the whole chronic pain and fatigue experience.
So much THIS.
Love this. The Mr. And I are both spoonies, and the understanding is helpful. He has an especially difficult time dealing with VA docs…. They pretty much seem like young people can’t be sick. His primary even tried to tell him that a 90/49 blood pressure was “normal”!
That said, yes, educate yourself. But beware of being a hypochondiac because of Dr. Google. Make sure you can tell a legit source from fluff. And docs don’t like being corrected….. I had one strongly imply that I was faking because I had my facts straight and a typed list of symptoms (sorry, writing by hand hurts me).
The fake it till you make it but not with doctors thing is spot on.
I have endometriosis and it took years to get diagnosed, which means years of not being listened to, years of being turned away and years being told to deal with it. Just even talking to a doctor is triggering for me now and if it’s a consultant’s visit I don’t go alone. Even if not advocating for you just someone else being there can keep you calm and gives you another perspective after the event. On the occasions where I was able to actually convey how awful the pain was I was unavoidably upset and like any human when upset I didn’t remember everything that was said. I am lucky enough to have a lovely wife to take, but maybe this is the response to give someone the next time they ask if they can do something.
It is very difficult to convey pain (or any subjective experience) to another person, but I found the pain scale linked to below really helpful, because it gives descriptors for each number which refer to things like whether or not you could work with this level of pain, whether or not you are incapable of speaking, whether you are beginning to throw up because of the pain. This makes it clear just how much you can’t function which is what you want them to know but is really hard to say. I just printed it out and showed it to my doctor and said every period is at minimum no 7 (Makes it difficult to concentrate, interferes with sleep. You can still function with effort), mostly no 8 (physical activity severely limited. You can read and converse with effort. Nausea and dizziness set in as factors of pain) and if I am really unlucky or fuck up my complicated layered meds then its 9 (Unable to speak. Crying out or moaning uncontrollably – near delirium). http://members.upnaway.com/~poliowa/Pain%20Scale.html The same approach works with other symptoms ie focus on what you can and can’t do when experiencing them, it makes easier for someone else to grasp.
I also learnt to keep meticulous records of who I saw, when, and what they said and having that second pair of ears really helps with this. I learned to take it with me every time and not to be ashamed to pull it out and say “but last time….”. I am putting this all in the past tense because since a hysterectomy 2 years ago my problems seem to be over (my endo pain was around periods) but I know from research that this can change so I am always going to be watching out for this one until my menopause ( I kept my ovaries so still have a cycle that will one day stop).
It is a huge injustice that at the time you feel least strong and least your normal self that you have fight so hard but getting lost and overly dwelling in that injustice (saying that like it’s easy I know it’s not) really saps strength much needed elsewhere. The biggest thing I think I learned and still use was about picking battles or choosing where to spend energy.
The “don’t cry” thing is sadly too true. After months of exhausting myself trying to figure out what was wrong with me, I got into a specialist only to start crying because of all the stress I had been under, and he got really cold and weird with me and dismissed me. I pushed for a referral to another specialist, who was wonderful, but he left my file open on the computer and I couldn’t help but read it over his shoulder. The last doctor had written things like “hysterical”, “overly emotional” and even “uncooperative”!! I felt like I was in an episode of Seinfeld, the one where Elaine tries to see what’s in her chart and wants to steal it so she can change it!
Wow, that’s so horrible!!! I’ve thankfully never dealt with chronic illness, but during junior year of college some combo of high stress levels and my typically weirdo/sensitive skin resulted in me getting a ton of mysterious rashes and skin issues that were driving me crazy. When I finally went to the student health center and started talking to the doc there, I started to cry (this always happens when I’m really miserable and someone is nice to me and listens to me… like I can keep it together for a while but then if I talk to my mom or someone mom-like, I just start sobbing, haha). She just said something like, “I know, you’re probably just like, ‘I just want to figure out what’s wrong with me!’ It’s so frustrating!” and was so amazing and understanding and kind. I guess that was super lucky! (but I feel like this mindset should be a prerequisite for anyone who deals with patients!)
I feel this so much. I once went to a psych because I needed my (very obvious) PTSD diagnosed. I read my chart years later when I needed to submit my disability records to school, and saw “Displays signs of group B personality disorder- likely narcissistic” or something along those lines. I have none of those symptoms, so I’m assuming he somehow misunderstood when I said “I was more intelligent than my peers while growing up, and it made them uncomfortable. They thought that I thought I was better than them, but I don’t think anyone is better or worse than someone else”. It’s frightening how much little things can affect our lives with doctors!
I once saw a post highlighting the intersectionality of women with disabilities. They were debating how to appear for a disability tribunal- too made up/clean/pretty/ well dressed, and it would seem like they have no disabilities. Too slovenly or casual, and they’d be pegged as lazy, or unfit mothers. Most tried to aim for middle ground- clean enough, but minimal or no makeup, and neat but not too neat clothing.
You guys should check out How to Live Well with Chronic Pain and Illness by Toni Bernhard. She’s wonderful. Practical, gentle. She writes a blog for Psychology Today, too: https://www.psychologytoday.com/blog/turning-straw-gold
LOVE HER! I’m also a big fan of her book “How to wake up,” which applies some of the same Buddhist philosophies: http://www.amazon.com/How-Wake-Up-Buddhist-Inspired-Navigating/dp/1614290563
This xInfinity 🙁 And you think “oh, it’s just bec. I have an invisible chronic illness.” Nope. I’ve dealt with debilitating, soul-sucking migraines since I was 16 — just like my mom, thanks, genetics — & gotten the same reaction from doctors & friends. Then, 2 years ago, I got breast cancer. Just bec. that’s a well-known, “treatable” disease, you’d think this stuff wouldn’t apply. Nope, same thing all during treatment & now, esp. with side-effects from treatment (I had surgery, chemo, & radiation). Basically, ppl can’t deal with other ppl’s pain, even doctors. Except maybe others in the same boat?
Well, this is the story of my past 16 years (except the weed- I’m badly allergic). Every blood test came back normal, so all my MDs and specialists said it was just normal aging and I wasn’t adapting well. When I finally got a naturopath, she thought to test for Mono. Sure enough! 16 straight years of Mono. Now, not even she can figure out why my body can’t heal itself (after 2 years of elimination diets, supplements, and stress relief exercises). I, too, lost 90% of my friends, but the biggest problem is work- I’m always in danger of getting laid off (it happened the last two times I filed FMLA. Can’t get on disability without a diagnosis, either.
I’m curious how they discovered your nerve damage, though. MRI?
I feel this. I’ve been in the same boat and the hardest part is finding friends who get it.