Show me the real you

This is how I appear to the world.  I look disgustingly healthy and not in bad nick for someone who will turn 47 this year!  In some ways I can understand those who think I am somehow exaggerating my illnesses and there can’t possibly be that much wrong with me.  I’m sure I’d think the same thing if I were them.  Imagine what healthy people think when someone who looks like this parks in a disabled bay, then gets out of the car and walks to the shop!

This is the face I choose to show the world and I do so to appear ‘normal’.  To fit in.  To not have people pity me.  To have them talk to me about subjects other than my health and to treat me like the interesting human being I am, not the depressed victim they think I should be.

There are some people who are genuinely pleased to see me out and about, and there are those who think I should stay in bed and be sick 24/7, especially as I’m claiming disability benefits which their taxes are paying for.  The wearing of make-up (I obviously have enough energy to put my face on then), having a tan (which means I’ve been lounging about in the sun while they’re working hard to keep me) or buying fashionable clothes (where are you getting the money to pay for them?) are frowned upon.

Here are some of the comments which have been made to me over the years:

  • “I wish I looked that good when I was ill”.  I think this is meant as a compliment, but it somehow implies that I’m faking being sick.
  • “I was obviously born in the wrong century – some of us have to work for a living”.  This was levelled at me by my neighbour, a hard working farmer’s wife, as I lay on my sunbed (I was too weak to sit upright) under a parasol one afternoon listening to a talking book on my ipod.  It must look like my life is one long holiday, when in reality it was the first time I’d set foot out of the house for 3 days due to a horrendous migraine session.  I need Vitamin D and fresh air just like everybody else.  I did say to her “I’ll swap you my bad health for your husband, children and holiday home in The Canary Islands” but it didn’t really cut much ice.
  • And my all time favourite: “it’s nice to see you out, you must be feeling better”.   What do you say to this?!

The day the above picture was taken I was having a ‘good’ day (I use the term relatively lest you think I mean I felt well).  Trouble is I can’t keep up the pretence for long, so after a couple of hours I’ll be found wilting in a corner and making my excuses (the dog needs feeding, Hugh Jackman promised he’d ring) and slinking off home so that I can crawl back into bed to finally let the exhaustion take hold and the pain hang out.

This is the face I don’t show to the world.  When I’m ill people don’t stop by to visit (not that I could cope with company even if they did), so no-one gets to see the reality of my day to day existence.

Here I’m having a migrainey day, hence the gel strip on my forehead and ice pack on my head.  My back is painful and helped by my TENS machine (the little box on the left with the wires poking out).  I feel sick to my stomach and am clutching my trusty hot water bottle.  I went over on my ankle the week before so that’s still strapped up, and my tendonitis is playing up on my right arm hence the elbow and wrist supports.

When I think logically about it, what would any visitor say to me in this state anyway?
“Hope you feel better soon” doesn’t really work when you’ve been sick for 20 odd years with an incurable disease.
“Having a bad day?”  No shit Sherlock.
“Is there anything I can get you?”  Apart from a new body and a digestive system that actually works?  Not really, thanks for asking.

I get quite grumpy when I’m in this much pain, so probably best to leave me the hell alone (which would be great if only being left alone wasn’t so goddamn isolating and lonely!).  Honestly I’d kill for someone to lie down next to me and cuddle me, or to stroke my head or rub my back.  Dream on.

Like many chronically ill people I’m constantly torn between wanting to appear normal and be treated just like everyone else, to wanting my pain and suffering to be acknowledged and not ignored and dismissed.  I like it when people say I look well especially when I’ve made a monumental effort to look nice, while at the same time I’m resentful of the compliment as I feel so horribly ill standing there chatting and trying my best not to keel over.  If even I can’t decide how I wish to be treated it’s a bit unfair to expect those around me to know what to do and say for the best.  I don’t have any answers and it’s a dilemma I’ve struggled with and still not reached conclusion on.

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21 thoughts on “Show me the real you

  1. Sherry

    Hello again.

    Well written. It seems it is all an extraordinary balancing act… that is, navigating the action, non-action, and challenging comments from folks while living with the experience of having a relatively invisible illness and an equally relative healthy appearing exterior. Can’t tell you how often I have ventured into some activity or event (sickly and questioning my choice to do so) and bounced horrendously (and unsuccessfully) between the desire for my health not to dominate the experience or discussion but also for people to mercifully acquire a closer perception to the truth of my condition and be “real” with me, unfettered by fear and false behavior.

    I have been told how good I look so many times while, “behind the scenes”, I am struggling to keep a lid on my symptoms… and at times even I, when I look in the mirror while feeling overwhelmed with terrible symptoms, can’t believe I don’t look worse. But I’d rather look better than I feel or folks will think I am evidence that zombies are invading Earth!

    As much as I am continuously challenged by the misperceptions and seemingly hurtful or uncaring or lazy or indifferent or spiteful or trite or just plain wrong comments made to me over the years… I have slowly found a way to handle them – most of the time. The paradigm shift for me occurred some six or seven years ago when I was still working but became too sick to be able to go to my place of work and was using a home office (after first cutting my work hours at the shop, then going in every other day, then half days…and so on). I lost count how many times the conversation would go like this:

    “You work from home?”
    “Yes, my illness has restricted my ability to the point of not being able to get to work so I have set up a home office.”
    “You are so lucky to be working from home!”.

    And to this last comment, sometimes only silently in my own head or outwardly to the speaker of this exclamation I would reply, “Well yes, if I had actually chosen to work from home and was not forced into doing so.”

    The whole exchange would leave me perplexed and angry. How is it that people don’t hear the important part – that I am too sick to go to work? Why do they almost always (95% of the time) speak to the idea of me being lucky to be able to work from home? …. One day, out of the blue, it occurred to me that they were absolutely right! I was lucky. I was too sick to go to work – this was and is still true… but I was also lucky to live within circumstances that gave me the opportunity to be at home to work. Why was I fighting that? Suddenly, I felt grateful – not angry. It was such a relief and fit naturally into a way of being that pleases me – one less affected by anger.

    It does not change the fact that people gloss over the important facts of my illness, that they don’t really want to hear about it, they don’t really want to face it, that they might not even believe in it, that they don’t know what to say, that they don’t know what to do, that they don’t hear the facts of my situation but instead immediately begin a comparison of my circumstances (as they have perceived them to be) to their own circumstances – and they judge the differences or similarities as good or bad or indifferent to their own. Me being too sick to work makes their life seem better and my ability to work from home makes their inability to do so seem worse… and that way of thinking ends up being the basis of their saying “You’re so lucky to be able to work from home.” It also avoids having to say anything directly related to me illness and take the chance of going somewhere they fear.

    I don’t know what the answer is to finding the balance we desire – not sure there actually is one. My paradigm shift had a profound effect on me if only in the visceral understanding that my “set in stone” perceptions (of anything) are not set in stone at all. Thank God.

    All I can do is be aware of my own thoughts and choose to either be drawn in by them or not… same goes with emotions… I often ask myself – when I remember lol – Is this useful? Most of the time the answer is no.

    But as someone who knows the severity and invisibleness of this illness, I so do understand the deep desire for strengthened empathy and authentic compassion (with freedom from fear) among the people we interact with.

    Warmly,

    Sherry

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    1. bertieandme Post author

      I’ve actually lied for years and years Sherry about my illnesses. No-one knows I’m actually long-term unemployed. I tell everyone (my neighbours and even most extended family members) that I work part-time from home. It’s actually not a huge lie, as I do volunteer work – I just don’t get paid for it. They know I claim disability benefits to help with my automatic car etc. but don’t know I also claim sickness benefits as I’m unable to work – there is such a “scrounger” culture here that I’d feel even more ostracized than I already am. It helps me cope and not feel quite so judged, but in an ideal world one should be allowed to be sick, and have good and bad days, without being made to feel like they’re fiddling the state x

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      1. Sherry

        Yes, I get your choice to hold back information that makes you feel judged… been there. Let’s face it – we are all judgmental – all of the time! Specially of ourselves – often unaware that we are doing so. And besides, its up to us to divulge the details as we see fit.

        I recently read a blog (the only other one I follow) written about the topic of shame and found it insightful – in that it offered that shame serves only one purpose and that is to isolate us from others (and it is stressful and exhausting). So, shame requires our attention if it is present in the development of our decisions because it serves only to tear us down and bury us deeper in the dark. Guilt we don’t hide. Shame we hide. Regrettably, I’m not doing the blog author any justice (as I judge my own words here – lol) in my limited representation of his opinion.

        I pick and choose what I say about my illness and who I say it to – but I try to do this without worrying anymore about judgement – it has been a liberating choice. I’m no where near polished at disregarding judgement but I am much better prepared since realising that shame played a big role in the development of my anger and hurt feelings when I experienced uncomfortable exchanges with others.

        I do not assume that shame is buried beneath the surface of your decisions – I am saying it played a role in some of mine and I was grateful to recognize that.

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  2. Elli

    Thank you for sharing this ❤
    My favorite: "Is this whole histamine-diet-thing really necessary? I never heard you complaining about stomach ache." Yeah, "digestion problems" – a perfect topic for a nice dinner evening with friends 😉
    Regards Elli

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    1. bertieandme Post author

      You’ve just given me a lightbulb moment Elli! This is why I try my best all the time to hide the fact I’m as sick as I am – I just can’t bear the interrogation and having to justify myself. I don’t even mention my low histamine diet. It’s hard enough to explain why I’m having to go home at 9pm without explaining why I can’t eat 80% of the stuff on the menu :-/
      Jak x

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  3. artful affirmations

    Oh gosh, we could be twins! You have expressed, so very well, my own experiences and thoughts around having EDS. I am thrilled for you that you finally did find out what you were suffering from. I am thankful for your sharing as I have learned much already. I was diagnosed at 50 and am only now beginning to see the MC connection, 5 years later. It has been quite the learning curve.

    Thank you again for sharing.
    Terri

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    1. bertieandme Post author

      Thanks for taking the time to comment Terri and I’m so glad you’re finding my blog helpful 🙂 You’re by no means alone in getting diagnosed in middle age, it’s very common sadly (I was 42). Hopefully as EDS becomes more recognised diagnosis will happen much sooner in life, although I think it’s going to take some considerable time to get MCAD more recognised. Jak x

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  4. Karen Neill

    Oh!!! I’m so glad to have found you. I am mid-way through the diagnostic process. I’m struggling to get in to see the right specialists, etc., but I’m quite certain I have some sort of mast cell disease (if I don’t, can someone please remove this very, very ugly rash, and the abdominal pain, and the anaphylactic reactions? Thanks.). I’m so allergic to everything that I spend 90% of my time in my room- I can’t go out because smells of perfumes, foods etc., can send me into anaphylaxis.

    The thing I hate most is when doctors say “well, you LOOK fine”. I have a reaction that is very contrary to my typical personality. I want to take them, bind them up, and make them live like I do for ONE day. And then see how they feel. Assholes! (Oh! See? I would never swear in public!!! At home, when I stub my toe I can swear a blue streak, but my mother would be rolling in her grave!).

    I do have to say though, that I am amazingly thankful that many people I know, have known me ‘before’. In retrospect, I’ve probably had this disorder for at least 20 years, but it became suddenly, hugely, significantly worse when I was 38. I’m almost 41 now. So, I don’t get those comments from my friends. In public, it’s a bit different. I haven’t gotten a handicapped sticker (yet), because I can only really go to a few stores, and those ones usually have parking very close to the door. And I’m too much of a wimp- I’d rather put up with the pain than the stares, comments etc.. Frankly, because I’m also overweight, those comments would have another dimension wrapped in there, which I just can’t handle.

    I also am very, very lucky to have a supportive husband, and two really great kids.,although I hate that I can’t eat with them, or take them to the movies, or organize top notch b-day parties, I love that I can sit and do puzzles, some painting and reading bedtime stories. And when I’ve been in bed all day, and need a hug, there’s someone always there. This is what keeps me from falling into a horrible depression.

    One day, I’d like to get back to my work- I loved my work- and when someone says “It must be nice to be able to catch up on your reading”, I usually am not very tactful in my reply “Well, because of the medications I on, I can’t remember from the beginning to the end of most books. Besides, holding a book just hurts my hands way too much anyhow.” I know, not nice of me, but, seriously, I’d trade anyday!!!!

    I guess what I’m trying to say, is, thank- you. It’s good to know that there are others who get it. And if you ever need a metaphorical back-rub- I’ll send ya one. It’s not the same, but knowing that there are others out there really, really,helps.

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    1. bertieandme Post author

      I’m so glad you’re finding my blog helpful 🙂 I agree, it’s always great to find other people with the same issues as you (especially when they’re considered ‘weird’ or ‘rare’) and to know you’re not alone.

      Thanks for the offer of the backrub – I might take you up on that lol!

      Jak x

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  5. E. Milo

    I don’t look healthy at all and it really scares me. Nobody has seen me but my husband and sister in 17 months, so I don’t really care, but it’s difficult. I want to feel pretty-ish again. I haven’t put a speck of make up on in all that time and hair loss and acne/soon issues are wreaking havoc my self confidence. But, of course, I also don’t want to have to justify how ill I am because I look too good. What an evil quandary.
    By the way, you look beautiful in the “good” picture- so glowy and happy. I’m almost jealous. 😉

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    1. bertieandme Post author

      Even when I did my 10 bedridden years if I could manage to slap some makeup on I still looked really healthy (without foundation and blusher though I looked like a corpse). I remember going to my Nanna’s funeral – hardly anyone had seen me for 5 years – and I had lots of people coming up to me and saying how well I looked. Er, hello, I weighed 80lbs and looked like a walking skeleton!!

      As you can see from my photo I have very, very short hair because a) I don’t have the energy to style longer hair and b) it won’t grow in any event. What you can’t see is that it’s so fine you can see my scalp all the way round my head, and when I use my mobility scooter I have been asked by people that don’t know me well if I have cancer and am having chemotherapy :-/ With the looming menopause it’s gotten ridiculous, to the point where I can’t do anything with it, and like you my confidence went through the floor. So last year I thought “sod it” and bought a wig!! I LOVE my wig. Started off with a short one, similar in style and colour to my own hair, but this month have gone for a bob length. I lie to *everyone* and say I’ve had hair extensions, and the wigs are so real no-one has any idea I’m lying 😉 Now if I’m going out I can just slap my wig on in under 2 minutes and I look like I have long, shiny, healthy, thick, gorgeous hair – yayyy 🙂 I’ll do a blog post about it at some stage.

      Hugs
      Jak x

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      1. E. Milo

        Now, this is something I think about every day. My hair was always fine, but now it is falling out and breaking and I can’t even fathom that I used to colour it and Flat iron it daily. You can see my scalp also and it really makes me sad when I keep telling myself, “you don’t see anyone! And you’re trying not to die, who cares about your hair?!” The funny part is, I don’t like hair. I had mine as short, if not shorter than yours, for many years. Long hair kinda grosses me out, honestly. So, I was going to cut mine all off, but, when I wear a hat or scarf, the long bits coming down my neck give the illusion that my hair is still healthy… So I’m of two minds on whether to chop it or not. I think ease of washing and sleeping is going to tip it to CHOP IT OFF. And I could always get a wig! Can’t wait to see yours. Thanks for the reply. X

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  6. Asunda

    I’m 64. Faked my way through all of my life feeling the burning shame of being weaker than others, less than others, sicker than others, etc, etc. I only just got diagnosed with EDS. Assuming I’ll find out I have POTS and Mast Cell disease. Have a diagnoses of Gerd and IBS. As much as it hurt my heart to read your post it heals it. I’m just still trying to slip into denial on a daily basis. Feeling the same guilt every time I use my new handicap card in parking or take an electric cart around the store. On good days one of my favorite things to do is shop at TJ Maxx. One store shopping is just my speed. I get to forget that I’m 5’5″ weighing 120 because I’m sick and instead pretend I just have the luck of a thin body and enjoy seeing myself looking healthy and strong and stylish. Hah! The next day I’m back in my sweats, haven’t brushed my hair even because it hurts too much and it’s already afternoon. This is a hard life. Sorry you’re in it too.

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    1. bertieandme Post author

      Thanks for taking the time and energy to comment Asunda. Living so long with an undiagnosed disease must have been incredibly difficult for you – I’m so glad you’ve finally received validation that you’re not weak (in fact you have been incredibly strong your whole life!) and I hope you’re getting the help you’ve needed for many years. It’s difficult to adjust I know – my motto is to treat myself as I would treat a friend, relative or other loved one who is sick (we are often much kinder to others than to ourselves). Jak x

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  7. tabitha campbell

    only a fellow sufferer would actually understand ,,you took the words out of my mouth,, OOhh you look great people say ,,,like i usually am looking terrible??i have lupus sle im soon to be 44 years old ..my complications from this demon life eraser are to many for a healthy person to even fathom could be true..many times i have overheard cruel people whisper that i have made this up ….i find so hard to bite my toungue…as that is painful ..yes i made up somthing that keeps me homebound for months at a time ,i havent been in the sun in over 22 years im almost blind in left eye, my hearing is gone,heart disease copd ..ocd. mania .just got over chicken pox and ammonia and atrophid brain ryenods syndrom.hypo thyroid now mass cell so much more but due to short term memory loss ..i forgot where i was going with my comment…thats not a bad thing cause it makes me giggle..thank all of you for helping me remember im not alone ..

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    1. bertieandme Post author

      Sorry to hear you’re also treading the difficult road through chronic ill-health and multipe diseases Tabitha 😦 People can be unintentionally (and sometimes intentionally!) cruel. I’ve been reduced to tears in a supermarket car-park because of nasty comments when I parked in a disabled bay. Healthy people see “disability” as being paraplegic or missing a limb: there needs to be more education on people who look ‘well’ but have severe ill-health and are limited by fatigue, pain, breathlessness, muscle weakness etc. Jak x

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  8. d

    On the topic of shame and guilt there are two great Ted Talks by Brene Brown. They are short – about 15 mins each and very enlightening.

    d

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    1. bertieandme Post author

      It rings a bell that I’ve linked to the Brene Brown on one of my blog posts somewhere, but I can’t remember which one. I’ve also got her book on my Kindle and agree that she speaks a LOT of sense 🙂

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