My friend Karen commented on my last post that I was having a rough go of it and it got me thinking that I might be doing better than I expressed. I probably downplay the improvements partly out of superstition, but also because the hourly changes in this disease make any quantification of trends virtually impossible. And, even more than that, it’s the Can I Get A Witness? thing — that obsessive need I have to not sugar-coat… to make sure reality is patently clear… to lay bare the horrors and try to put them in perspective, held in relief against what life used to be like and, also, how much worse it could be. People are so excited to see progress that I get lovely messages saying, “Glad to see you’re feeling better!” When you’re sick like I am, there’s this knee-jerk reaction to follow up any proclamation of “I’m doing well” with but I still have X, Y and Z going on. Or “I went to the dog park” with but that was one hour out of a week that I spent mostly in bed. God forbid anyone gets the impression that I’m not still very ill.
Believe it or not, this is progress for me. I spent so long living like a clenched fist, ashamed of what had happened to me. My sense of self was so tethered to being vibrant, independent and energetic, that the thought of being seen as sickly paralysed me with loathing. Not only did I, myself, squeeze closed in defiance against my illness, but I brought others into the ruse by vowing them to secrecy and deflecting any concern. I remember, six months after I got sick, telling our administrative assistant that I was leaving my job. “I’m sure you’ve noticed how sick I’ve been…” “No, you are?” she said and I was stunned into silence. How could she not have seen my white-knuckling it through the days? “Well, I’m leaving, but it’s only temporary, I’ll be back. If anyone asks, I’m taking a sabbatical as a bonus for all the years I’ve been here. Don’t mention illness to anyone.” It is only recently that I’ve started to relax my hold. I told an ex-boyfriend what was going on and was met with such empathy and kindness that he might as well have physically unfurled my clenched grip. He didn’t seem to be thinking, Phew, dodged a bullet there like I assumed he would. So, I started talking about it a bit more, without that roiling, acrid squirm in my belly. I mentioned it on my facebook page, and have slowly — very, very slowly — started to be ok with sick being part of my… brand (for want of a better word). So, I try to embrace my unsolicited and redundant descriptions of life as healthy steps towards self-integration.
But things are better and I’m probably handling this life better, too. I looked in the mirror the night before last and I was smiling while washing my face. I looked normal, I felt almost normal. I remembered how there was a time that my husband was washing my hair and making my meals. There were months when I lay in my room, hour after hour, bouncing between panting, wild-eyed terror and feeling like a slab of immobile meat, with barely a breath or pulse. You can have a husband downstairs or a friend a phone call away and still be totally alone, planning your permanent solution because it doesn’t matter if the problem is temporary, you can’t last one more minute. There’s only so many times you can tell someone how awful you feel. My few confidantes took on the burden of that while I folded into myself, away from friends and family.
How are you? I miss you!
I’m half dead, scared and lonely. Miss you, too.
There’s only so many times anyone can deal with that, even your closest allies. So, after a while, you stop talking about it. You decide that you better start grinning and bearing it for everyone’s sakes, including your own. But the need to express the loss never goes away — at least not yet — which, I suppose, is why I continue with this blog.
So, without the negative couching, I will say, I feel better than I did a year and a half ago. Many chronic symptoms are more sporadic and I feel hardier, able to push myself without fear. Key to all of this is human contact. I’ve let down my rigid protection and connected with some people online who don’t judge or blanch in the face of the truth, who can listen, laugh and call me out on my shit. This has truly been hard for me, but I’ve been disarmed by their candor and charmed by their openness and that has allowed me to trust. I still tread lightly and share carefully, maybe not believing I won’t have to suddenly curl quickly into a protective ball like a rolly polly, but I feel a quiet evolution inside and that has made me less bitter more optimistic happier less bitchy more at peace.
Rag and Bone Shop of the Heart 
The braveness and the honesty. I salute this grrfriend.
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Clare, thank you for the kind comment. It means a lot. X
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Yes! I can very much relate to the part about not wanting to share too much, worrying about overwhelming people or putting them off.
But I’ll say this: Congratulations on your progress!
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Christine, thank you for always understanding and supporting. You mean more to me than you know! X
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Ugh, why can’t I edit the above?? Too much, not “to.” Ahhhh!
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I finally fixed this. You only had a typo in the universe for 5 weeks. 🙂
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Thanks for this. I can relate to every part of this post. It’s hard to be truly honest when nothing ever changes much. I don’t want those I love to give up on me and leave.
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Mark, thank you for reading and for the honest comment. It’s very hard to vocalise that you don’t want those you love to give up on you and leave. I feel this EVERY DAY. It’s hard to lower our guards. I hope you have an army of loved ones fighting for you.
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I am happy for your feeling better, Emily. You have put a smile on my face after reading your post. 🙂
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Carol, thank you for the comment. I appreciate the support. 🙂
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Fern keeps me up to date.
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Love this post, which sums up how difficult it is to be realistic and honest about chronic illness but not give your friends and loved ones compassion fatigue – it’s such a fine line to tread.
As you know, I blog because no-one in my ‘real’ life wants to hear about my illness after twenty odd years. I don’t blame them, but illness is virtually my whole life so I either talk about it through my blog or I might as well just become mute.
Soooo pleased you are feeling better than you did when you first got sick, but totally understand your reluctance to admit this in case it gets jinxed! x
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Compassion fatigue! Exactly. I do find it amazing that you’re able to put a brave face on it around friends and family. I haven’t reached that point yet. Even if I’m mute, my face says it all. I look forward to being someone easy to be around again! X
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Well, since I think it was I who inspired the post, I guess I’d better comment 😜. I’m glad you feel like you are doing better than you had perhaps expressed- but how we ‘feel’ is SO variable, I can see why it’s hard to describe. If I took my worst moments from the past month, and described them all, it’d be a bleak picture, if I described all my best moments, people would say ‘WTF, she’s not sick!’. How we feel is so relative- compared to what? Yesterday, My last anaphylaxis, last year, five years ago, you…? Compared to ‘normal’- I’m really damn ill, but compared to last year- I’m SO much better. When people ask ‘How are you?’ I try to answer the question as if they had asked ‘How is today’. Otherwise I’m afraid I’d say things like “I can’t eat anything, can’t go anywhere, can do anything without going into anaphylaxis. In fact, the fact that we are chatting increases my risk 10 fold.” Or…. “I’m not working, I play stupid computer games and tool around on Facebook all day. It’s agonizing at times, but it’s a good life. I highly recommend it to anyone who complains about the fact that their yoga instructor was 5 minutes late…”. But we don’t say that, do we? We say ‘Well, I’m out of the house. That makes it a good day!”
Ooo. I’m in a venomous mood- I’d best stop…
I’m glad that you aren’t doing too badly Liz, and I’m glad that you’ve been able to get out with the dogs. I also know that your digestive system is a touch off the rails, and how hellish that can be. I’m sorry you have to put up with any of this. I’m sorry anybody does. You have a right to share as much as you want- it is not a sign of weakness, it is a way to open up to others and allow them in. We all need support, and pretending that things are better than they are only serves to not have our needs met. The balance of optimism/realism is SO hard.
I’m so pleased that you feel like you can ‘open up’ to everybody in your life. People will love you for you- not because of your illness, not because they pity you, not in spite off our illness- they will be your friends because they like YOU. The illness is part if you, but it doesn’t need to define you.
Love,
Karen
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Oops- open up to MORE people in your life, not everybody in your life!
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I don’t mind your venomous mood, Karen. Feel free to voice it here since you probably don’t around your kids and family. 🙂
I also appreciate that you said this is a way to let others in. I often wonder whether what I write is a deterrent, so the affirmation is welcome.
I’m thrilled you are so much better than last year, but I have no delusions about how scary and unpredictable your life is. No one can understand the alarm bells going off in your mind 24/7 unless they’ve experienced it. ❤
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Like others, I too identified with your post. I think I’m a hider – IRL I hide how ill I am from everyone except my parents, & 1 close friend who has her own health problems. My sister knows historically from having grown up with me, but nowadays she’s out of the loop.
I hide it from the doctors too, because I’ve been told they can’t help me. I felt so annoyed at the lack of help (not even ‘support’ – just abandonment) that I think I became hardened and proud and thought F them, I’ll just get on with it by myself (as they told me to), and thus The Hider was created. It becomes innate after a while, but as Jak said – it’s our lives… The main part of our lives… It seems ridiculous that something which shapes us so much is such a taboo.
I think sharing is problematic because on the one hand I don’t want to be known as ‘that sick person’ or a Debbie Downer, depressive, whinger, but on the other hand I never want to minimise my reality and do myself (and other sufferers) a disservice, and it’s hard to be honest without making healthier/healthy people feel uncomfortable. So I just don’t share. Yet my lack of honesty leads to a life that makes no sense – people must wonder and I’m sure I’ve hurt some people by cutting them off when our worlds became too dissimilar and they started to treat me poorly as I didn’t garner their respect through career/material possessions etc.
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That’s exactly it, Vicky: finding a way to be honest and not hide, but also not being a whinger or having your (our) entire identity be illness. I haven’t found the sweet spot. I am naturally very (too?) honest. People ask me how I am and I tell them the truth. Not many know what to do with that. I mean, what to do with it in a practical sense, like come over and offer company, laughter, helping hands… It does feel like we’re ghosts when we don’t broadcast to the world in one way or another. Can you imagine this level of isolation before the internet? Count my lucky stars.
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