perpetualspiral may not have endometriosis, but she does have other severe autoimmune illnesses, and her rant below easily applies to what so many women with endometriosis also deal with from well meaning (and otherwise) individuals.
Please give it a read.
I let a lot of ignorant behaviours wash over me, because I like to pick my battles. But there are a few things that really get to me, and people’s well-intentioned, persistent or repeated suggestions about what I should be doing with my time and money is one of them. Worse still is when they are suggestions coming from someone who is or has been ill with a similar illness as mine. “It worked for me” is not legitimate evidence supporting a particular treatment, especially for such individualized, one-size-fits-one illnesses as ME/CFS and fibromyalgia.
Please note: this is NOT directed at any particular individual(s). I have had hundreds of well-meaning suggestions over the years, and they’ve snowballed to a point where I’m just fed up with arguing about them. From now on when anyone persists in their demand that I should try, buy, or do something, I will be referring them to this post. In addition, I am well aware that this post is probably going to make me sound like a royal bitch, but if you have any compassion in you, you might be able to understand why I’m writing it.
Why does this bother me so much? For one thing, it forces me to dredge up my reasons for not being able to comply, reasons that remind me time and again how deprived and helpless I am. No I am not exaggerating, being melodramatic, or throwing a pity party for myself. I am, in fact, deprived and helpless compared to most people, which I will explain below. To the well meaning suggesters, my reasons for ‘non-compliance’ sound like close-minded excuses, and apparently invite them to keep arguing. So, once and for all, I’m going to tell you why my reasons are not excuses, and why I can’t try every supplement ever created or go to an acupuncturist or read a book that’s not at my library. It all boils down to one thing: resources.
I am poor. When I say I am poor, I don’t mean that I live in a townhouse instead of a bungalow, or that I drive a battered old car instead of a new SUV, or that I can only afford to eat at a restaurant once a week. When I say I’m poor, I mean I’ve needed new underwear for six months and I haven’t been able to buy them. I mean that if I do go out to dinner once a month, I will spend the last week of that month with less than a dollar in my wallet. I mean that after I pay my rent, bills and groceries, supplements, household necessities like soap and toilet paper, pet food, transportation to my doctor’s in Toronto, and my therapist fees, I have about $100 dollars left for the rest of the month. When you tell me I should try a bunch of herbs for my symptoms, I ask you, what do I sacrifice? Do I give up my other supplements and deal with you telling me I should be taking those ones? Do I starve my pets or myself? I don’t really need a home phone, right? I can do with out soap. After all, I never leave the house, so why do I need to be clean? And since I’m unclean, why do I need a clean apartment?
I live in subsidized housing, a bachelor apartment that is one square room with a bathroom. I have no balconey. I share this box with a dog and a cat, who give me the only physical contact I ever get, save for a half-hug with my mom once a month, and a real hug or two when I see my best friend every other weekend or so. These animals are the closest thing I have to a family.
It may be hard for you to believe that the Ontario government would force its disabled to live below the poverty line, paying only for old generic drugs that only mask a little pain, and no other treatment of any kind (unless you happen to have diabetes). But whether you want to believe it or not, that is the truth. There are thousands of us – ask any one of us.
When most people say they can’t afford something, what they really mean is “I’d rather have…” …that new pair of shoes, a manicure every month, the second car, the extra 9 holes, the acting lessons, etc. What I’m saying is that I’d rather have food, shelter, toilet paper and my pets than an energy healer or white willow bark tincture. Don’t tell me how inexpensive grape seed extract is or that a TENS machine is SO worth the cost. I don’t even have five dollars to spare. I am saving my literal pennies in a coin bank so that by the time I’m eighty I can buy a mobility scooter and leave the house once in awhile. As I saw recently on one of the dozens of “Top Things Not to Say to a Chronically Ill Person” lists I’ve read since Invisible Illness Week, don’t suggest it to me unless you are willing to pay for it. Because I just can’t afford it! This applies to health food and allergy-free items as well. I do most of my shopping in the produce section already, but I can’t afford organic, nor can I afford to eat the recommended daily amount of vegetables.
I have Chronic Fatigue Syndrome and Fibromyalgia. That makes me a ‘spoonie’. If you don’t know what a spoonie is, read this. In short form, spoons are a metaphor for units of energy. People with chronic illnesses that cause weakness and fatigue only get so many spoons a day, and this number is but a fraction of that of a healthy person. Lately I’ve been getting about two spoons a day. What can I do with a spoon? Well, I can prepare a healthy meal, OR I can sit up at my desktop computer for 45 minutes OR I can run a small errand like going to the corner store and mailing a letter OR I can take my dog for a 20 minute walk OR I can have an hour long conversation on the phone. So, if I only have two spoons, I can only do two of these things. So please stop telling me that I should go for a long walk to clear my head, or take some yoga classes, or try this self-massage technique, or go to a support group, or go anywhere. My priorities are trying to keep myself clean, well-fed, and not wanting to scream, cry or die. If I could do other things, I WOULD.
The weirder part is, I’m very touchy about any suggestions. If you persist in suggesting something to me, not only does it remind me of how sick and poor and helpless I am, it makes me feel like you think I’m ridiculous for not doing it already. It makes me feel pressured. It even drives me nuts when people tell me more than once what television shows I should watch, when I’ve already said I would like to do so if I had the opportunity. I don’t have even one television channel. The library doesn’t have it for me to borrow. Obviously I cannot afford to buy DVDs. I can’t even afford to sit up in a chair and watch television on my computer. So again, if you want me to watch something, provide it to me and I would be more than happy to comply. But acquiring such things are not on the top of my priority list. (Note: to my friends who may have done this – I am not angry with you! I know this is my odd issue, and it is an overreaction. Please understand why? It hurts like hell to be reminded of all the things I am forced to live without.)
Am I saying I never want to hear a suggestion from someone trying to help me ever again (unless they are offering to pay or do for me)? No. But it would be excellent if you would acknowledge my impoverished situation when you do it. Try saying, “I know you can’t afford this right now, but in the future, you might want to look into…” If you want me to read or watch something, one mention is just fine. I have a list of television shows I’d like to see and books I’d like to read, and I’ll add your suggestion to my lists. When I tell you why I can’t do something right now, like read 10 dry blog posts or articles or watch a million dry informative videos on youtube because it takes a lot out of me to do those things, don’t argue with me. I may bookmark it, I may not. But I have my own priorities, and I don’t need help with arranging them, thankyouverymuch.
I would like to repeat that no one should take this post personally. I have written it so that in the future I won’t have to waste spoons trying to impress on people that “I can’t afford it” is a literal term when it comes from me. I am not angry with anyone for their past suggestions, and I am fully cognizant that in general everybody is trying to help. But you may be able to understand that reminding me of my suffering and inability to escape from it does not, in fact, help me. To be clear, I like information. I don’t like people trying to persuade me, all the while not hearing me when I try to explain why I can’t be persuaded.
Now, if you still think I’m a bitch, I am okay with that. Nobody’s forcing you to follow me on Twitter or read my blog. My real friends will always support me, because they understand me. Amen.
Thanks very much, perpetualspiral, for permission to reprint your rant here!