I don’t often talk about the fact that I am living with invisible chronic illness, and for quite some time now I haven’t been sure whether or not I should share that fact here, but lately I’ve had several experiences that have reminded me that, while it is something intensely private to me, lately I have been gifted with more intimately acquainted with several other people who have needed to hear my story in order to better cope with their own situation. So, in the hopes of spreading understanding, empathy, and better self-care for everyone, I am sharing with you a piece I originally wrote over a year ago during Invisible Illness Week that still applies today.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Fibromyalgia, chronic migraines, scoliosis, arthritis, Reynaud’s.
2. I was diagnosed with it in the year: 2005
3. But I had symptoms since: childhood, really, but bad symptoms starting in 2000.
4. The biggest adjustment I’ve had to make is: learning to say no to things that I would love to do simply because my body will not allow it
5. Most people assume: That because I don’t admit to being in pain each day, I must have pain-free days. I don’t. My last pain-free day was November 2002. Every day since then has held at least a moderate level of pain. Some days are better than others. Some days are hell on Earth. I don’t talk about my pain much, or try to dwell on my symptoms, because it helps my mindset when I choose not to dwell. It is really for selfish reasons that I do not share the depths of my symptoms.
6. The hardest part about mornings are: Pain, stiffness, fatigue. Mornings are an exercise in endurance for the first little while.
7. My favorite medical TV show is: It’s a tie: Grey’s Anatomy, and House.
8. A gadget I couldn’t live without is: my electric jar opener. Also, my rocking chair. It may make me look like a grandma, but knitting and rocking is a great way to take my mind off pain.
9. The hardest part about nights are: Trying not to beat myself up for not having been able.
10. Each day I take __ pills & vitamins. Anywhere between 3 and 11, depending on the day.
11. Regarding alternative treatments I:.am tired of hearing how Goby juice and Extract of Lamaberries cured your friend’s sister’s kids’ soccer coach’s grandmother and will cure me too if I’ll just give it a chance. It makes me feel like you think I’m not doing enough to try to beat this thing. It isn’t something that can be beaten. It is something that has to be lived with, and I’m trying to do that the best way I can.
12. If I had to choose between an invisible illness or visible I would choose: a visible illness. There is nothing worse than having people and doctors treat you as if you are (a) a hypochondriac, (b) clinically insane, (c) a drug-seeking addict. People are wired to believe what they can see and touch. When you don’t look sick, they can’t help but wonder if you are faking it just to get attention or to get drugs, and once they’ve had that thought once, it is hard to dislodge it, and it colours every interaction from then forward.
13. Regarding working and career: I miss working the way I used to. I miss being able to do something until it was done right. I miss being able to work long hours into the night. I hate the embarrassment of discovering that the pain or the pins and needles have been enough of a distraction that I’ve made yet another big mistake. I miss knowing that I can make a promise to accomplish something and will of course accomplish it, and on time.
14. People would be surprised to know: That on the days when you ask what I have done today and I reply glibly with “Oh, a little gardening, a little reading, a little knitting…” and you think how spoiled she is, how lazy… What I am not telling you is that those days are the ones filled with pain to the point where I cannot stand to move, to stand, to sit, or even to lie down. I go out in the garden and let the touch of the plants be a sort of meditation, grounding me to my surroundings and reminding me that I am but a tiny piece of the glory that is our universe. I read as an escape from my current reality of agony, and as a distraction, and as a pleasure in the midst of pain. And when that escape is no longer working, I knit, to keep my hands from clawing at the ants buzzing around under my skin, and to keep my mind busy enough with knit three purl two that it won’t get lost in negativity.
I think people would also be surprised to know that pain doesn’t have to be an excruciating pain to have a profound effect on your life. If you want to know what it is like to be in my body, try this for a while. Add a pebble to your shoe. It isn’t much, really, just a little thing. An aggravation in your shoe. I saw a campaign on the web that suggests putting a clothespin on your finger and seeing how long you can stand it. At first, it is a minor pain. An annoyance, really. An irritation. An aggravation, perhaps, if you succumb to anger. But after a while, the pain dominates your thinking if you let it. All you can think about is how long until I can take the pebble out of my shoe. You start trying to walk differently, trying to avoid the thing that causes pain, but then other parts of you start to ache because you aren’t using your body the way it is supposed to be used. So you go back to walking normally, pretending the pain doesn’t exist. You walk slower, but when that doesn’t work, you walk faster. You buy better shoes. You lean on a cane for a while. You take Tylenol, and Advil, but the pebble is still there. You try hopping. You try crawling. Still a pebble. Mind over matter, you tell yourself. Meditation. Breathing. Hypnosis. And a pebble, still in your shoe. “You don’t have acute pain, you don’t need strong drugs,” the doctor tells you, and you can see him thinking don’t you know there are people who are in serious pain out there? Stop whining. “What’s the matter with you?” your boss asks, “Your mistakes are costing me money!” and you want to scream can’t you see the pebble? But of course no one else can see it. Most don’t even believe it is there, not all the time. It couldn’t possibly be. Those who do believe don’t understand why you don’t just take a Tylenol and make it go away, like they do with a headache. Pain is conquerable, after all. We have the technology, they say. Because the alternative is too scary to contemplate: What if the pain never goes away? What if I’ll always have a pebble?
When I see someone struggling with a pebble, I want to hug them and say “You’re not alone; I have a pebble, too.”
It won’t make their pain any less. But it will make it less frightening. Less lonely. Hopefully they will begin to see all the things they can do in spite of their pain, rather than all the things they have had to give up against their will. Hopefully they will see that, in spite of the pebble, they can still be the kind of person they want to be. That, even with a pebble, life is still good.
15. The hardest thing to accept about my new reality has been:That my daughter has never known me when I wasn’t in pain, and that my son was too young to remember it. My pain affects their life every day, and I hate that. I find it so hard to live with that knowledge.
16. Something I never thought I could do with my illness that I did was: Talk about it with friends and family. Strangers and medical professionals are easier, somehow. Friends and family matter in a really profound way that makes talking openly a very scary proposition.
17. The commercials about my illness: Make me furious and pleased all at the same time. They downplay how debilitating chronic pain can be, and then imply that a single pill will cure you of all symptoms, which makes me crazy. But, that there are research dollars being spent and that fibromyalgia is becoming more and more accepted and not just seen as female hysteria or hypochondriac behaviour is a very encouraging thing.
18. Something I really miss doing since I was diagnosed is: Being able to move my body freely without pain or discomfort. There are so many things I would do again or take up doing if only my body weren’t determined to make me pay for every exertion.
19. It was really hard to have to give up: my basement office. After designing the space, renovating the basement, installing a pair of gorgeous custom french doors, painting, decorating, moving in furniture, and even planting a garden bed of flowers that tapped against the window in the breeze and made me smile every day… it was tremendously hard to admit that the stairs were defeating me by the end of the day, and that I needed to make yet another concession to my body’s needs.
20. A new hobby I have taken up since my diagnosis is: Knitting and sewing.
21. If I could have one day of feeling normal again I would: Feel blessed. I’ve been privileged enough to have a brief respite from my illness, in 2002. When I got pregnant with my daughter, for some unknown reason, my pain went away for a while. For four months, I was a regular, happy, pregnant woman. The only pins and needles I had were from sitting on my leg too long while playing with legos with my son. The only aches and pains and fatigue I had were from an honest day’s work spent crouched over the garden or in front of the computer. A whole day in the garden, not just 15 minutes at a time. An entire day of work, productive and satisfying. I didn’t miss any days of work. I didn’t find myself apologizing profusely and promising to fix the mistakes I had made, embarrassed yet again by having completely dropped the ball for no apparent reason. I got my job done, and done well, and felt like a consistently valuable member of the team instead of an erratic one. I went out with friends without thinking about it. I chased after my toddler without hesitation. I went hiking in the woods. I held my son to my breast to nurse without wondering if I should wean him because his head was heavy and put pressure on one of the tenderpoints in my arms while he nursed. I walked all the way to the library and back again on a sunny day. I went camping for an entire weekend and still was able to go to work Monday. I danced, really danced, just for the pleasure of moving. I woke up early, before my alarm clock, and jumped out of bed. I stayed up late if I felt like it. I worked late if I needed to. I baked, almost every day, cookies and muffins and cakes and bread, just because I could. My house was tidy, my kitchen well-used, and the takeout menus lost in the back of the cupboard because I love cooking and I had the energy to cook every day. I laughed. I laughed a lot. It was this incredible lightness of being, to be free of pain. The endless weight of my body had been transformed into something free and easy and buoyant. Four months of buoyancy.
I still remember the morning the pain came back. I woke up late that day, and felt tired despite having had a good night’s sleep, and burst into tears when I realized my hips were aching and the pins and needles were back. My body had weight again.
I would like to say that I raged, then. That I screamed my fury at the heavens and cursed the day I was born, but I didn’t. I do sometimes, when my body’s limitations seem to be bigger than I am. I didn’t fall into despair, either. I do that sometimes too, when it has been a particularly difficult stretch, but I didn’t then. Somehow, I felt blessed. I felt regret that it was over, but I felt blessed to have had such a long stretch without pain other than the ordinary sorts of pain. It was a reminder, I think, that I was a person independent of my pain, and that I couldn’t let my pain become me.
I haven’t had a pain-free day since then. I’ve had what I consider good days, and not-so-good days, and days that bring me to tears, but never since then have I had a day without pain. A day without making impossible choices. A day that isn’t a struggle to keep going despite it all, and sometimes a struggle that I find myself starting to lose. My daughter is seven. My son is nine. My daughter has never seen me not in pain, and my son was too young to remember it, and my spouse still struggles to come to terms with the many little ways I’ve changed since the pain came to stay.
22. My illness has taught me: That your emotional life is so very dependent on your physical life. That as much as I might wish to, I cannot divorce myself from the body I am in and I must carry on regardless. That pushing yourself harder is not always wiser; it is often merely self-abuse. That even with a good reason for why I am not able, I still feel terribly guilt-ridden for not being as able as I wish to be.
23. Want to know a secret? One thing people say that gets under my skin is: “How are you doing, really?” I know you are trying to be kind, to understand, to be sympathetic. I know I should be gracious, and informative, and nice. But what I really want to say is ‘I feel Like Crap, thanks. Better than yesterday’s Excruciatingly Awful, or Tuesday’s These Damned Pins and Needles Are Making Me Insane, and much better than last weekend’s Are You Sure Suicide Isn’t An Acceptable Alternative To Living This Way, but overall I feel Like Crap. Every day. Every single one. Except for those four amazingly wonderful months in 2002 when you thought I was hyper and quite possibly On Something but really it was just the lack of pain making me giddy. I’ve felt Like Crap or Worse Than Crap every single day for most of the last ten years. Stop asking already. I get depressed just thinking about how to answer you politely.
24. But I love it when people: Understand that when I am vague about committing to doing something with you, it is because I don’t want to say yes then disappoint you when my symptoms force me to back out. And if I do commit to something, and do it, understand that sometimes I’m choosing to pay the physical consequences of doing something with you because spending time with you is worth the price. And that I’m likely to be a cranky mass of pain for a day or two afterwards, or maybe even half way through, and it isn’t your fault. It isn’t my fault, either. It just is.
25. My favorite motto, scripture, quote that gets me through tough times is: Breathe. Just breathe. You can do anything for just 15 minutes.
26. When someone is diagnosed I’d like to tell them: You are not alone. I get it. I’m just like you. I won’t judge you. I have a pebble too.
27. Something that has surprised me about living with an illness is: how abysmally unwilling the medical community in Canada is to treat chronic pain. Pain can only be self-evaluated. There is no blood test, no x-ray, no objective finding… pain is a purely subjective experience… therefore all chronic pain sufferers must be drug-seekers who are addicted to pain killers.
28. The nicest thing someone did for me when I wasn’t feeling well was: Bring me a home-cooked dinner when I was least expecting it.
29. I’m involved with Invisible Illness Week because: I believe everyone needs the opportunity to walk in someone else’s shoes, if only in their thoughts. It is too easy to make assumptions about people who are struggling to live with an invisible illness, simply because their illness is invisible. We often tend to stigmatize those with invisible illnesses while at the same time pouring our adulation and respect onto the heads of those with visible or widely popularized illnesses. I hope that my few words, and those of others who don’t look sick but are, will help open eyes and minds and hearts, and that the future will be better.
30. The fact that you read this makes me feel: validated. Like you care. There is so much to say, and it is so difficult to say it, and I am glad you took the time to listen.