Denial

The 8th of August was international severe M.E. awareness day.  I’m a bit late to the party, owing to a two day hormone-induced migraine, but better late than never.  This year, severe ME sufferers have been sharing selfies to show what it’s like to live with this devastating disease.  Thankfully I’m no longer severely affected, so my selfie comes from the year 2000:

Photo of me with severe M.E.I have a personal Facebook page on which I don’t discuss my diseases.  I am not my illnesses and sometimes I just want a social place where I can be like everyone else, so I choose FB for that.  But for some reason I can’t work out this year I decided to share a post to all my ‘friends’ about severe ME and the impact it had on my life.

I said I’d been virtually bedridden with severe ME for nearly 10 years.  How I lived alone.  Without care.  Without medical help or intervention.  I lay in my bed, on my own, for 23 hours out of every 24 for six years.  My only visitors were my parents.  I didn’t receive a single get well card.  My healthy friends and family forgot about me.  Which is all absolutely true.  I’m sick of pretending it didn’t happen because it makes the people I know uncomfortable.

The only people who commented on my post were my wonderful, supportive, generous, caring, understanding sick friends – most of whom I’ve never met in person.  Only one of my healthy friends commented and that’s because he fancies me and wants to date me (he would not have wanted to date me when I was bedridden).  None of my family members commented, apart from one cousin who said “what were we supposed to do if we didn’t know!  No-one told us”.  This comment was followed up by a text message, basically saying the same thing.  Which I ignored.

My entire extended family, which btw is enormous, knew I was sick.  My aunts and uncles all came to see me now and again over the years for which I am hugely grateful.  Some of my cousins may not have known the full extent of my illness, but if they’d bothered to pick up the phone to ring me and ask how I was they would have had more of an inkling.  But none of them did.

I’m amazed the cousin in question didn’t know how sick I was.  Her sister knew, because she’s since apologized to me for not bothering with me and said she feels really guilty about it.  Not so guilty she’s bothered to visit me once in the 11 years since I was severely affected but hey ho.  Her parents knew.  Her Mum came to see me when I was in hospital for 3 weeks.  She also leant me her caravan to stay in when I went for treatment at a private clinic down south for two weeks.  And when my parents were on holiday, and I’d found myself passed out (yet again) on the bathroom floor, I asked her if she’d ring me every day just to check I was still alive until my parents got home.  Which she did.  I’m amazed none of this was discussed with her daughter to whom she was very close.

Where did my cousin think I was on the day our Nanna was cremated?  Because I wasn’t walking behind the coffin with all my other cousins.  And I wasn’t at the crematorium.  Where did she think I was at all the family gatherings for 10 years?

The truth is she absolutely must have known I was ill, but has chosen to suppress the knowledge.  That way she didn’t have to do anything about it.  She’d deny that of course.

I’m still ill.  She only lives in the next village and regularly sees me on my mobility scooter, yet never comes to see me even though she has to drive past my door every single day to get home.  Yet she is upset I’ve said my family ignored me.  People are strange and my family seems more strange than most.

I got over the hurt of being ignored a long time ago.  I haven’t forgotten it, but I no longer sit and stew over it or cry about it.  Neither do I make any effort whatsoever to keep in contact with any of my family members or will I ever.  As far as I’m concerned my family consists of the Three Musketeers: my dog, my Mum and my Step-Dad and that’s all I need.

 

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8 thoughts on “Denial

  1. chrissy

    Being ill is such a lonely business. I have been very unwell for a year now, and getting progressively worse. I have lost all my friends as they just don’t get it. They don’t want to hear about your problems. They say how are you and immediately move on without waiting for an answer. So now I am invisible. I have not attended a family event in over a year and I am considered a neurotic within my brothers family, which is extremely hurtful. They have not seen my daily chronic excruciatingly painful hives, my dramatic weight loss and my haggered face through only 2 hrs sleep each night. I have only my husband, my daughter and mum in my life now. From having a card making business with clients on Facebook and many virtual friends I now have non. I have been abandoned and it hurts like hell. I now know of just a couple who understand. You, bless you 100% and a couple of other virtual friends who understand the pain of what is going on.
    So I fully understand your years of isolation and being treated like an unwanted outcast and I send you my deepest hugs Jak. Xxxxxx

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    1. Jak Post author

      I’m so sorry to hear your family and friends aren’t supportive Chrissy. It’s so hurtful, especially at a time when you need them the most. My biological Dad didn’t believe in ME, even though I wrote and told him I was critically ill, and replied that I should “pull myself together, there are people worse off than you” even though he’d never visited me to see how desperately ill I was. It’s shocking that family can blame you for being sick – like anyone would do this to themselves if they had a choice! Hugs, Jak x

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  2. Teri

    Hi Jak!
    You’ve been dealing with this for SO long. And with dignity & grace, in my humble opinion.

    I understand the protocol of not talking about your health problems. BUT(!) at the same time when you have something that has taken over your entire life like ME, if there’s no attempt at empathy and understanding, there is no foundation for a relationship. Maybe it’s a blessing I don’t have the extra energy to even care/worry about these ignoramus’s.

    Jak, I’m going off topic here. Do you think I could walk my dog on a leash with a mobility scooter? She heels very well. ❤ Teri<3

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    1. Jak Post author

      Hi Teri

      No problems with walking a dog on leash with a mobility scooter if he walks well. I walk Bert that way most days. You have two choices: you can either wear a sturdy belt, and hook your lead onto that so that you have both hands free for the scooter. Or you can just steer the scooter with one hand and hold your dog lead with the other. I do both depending on where I am – if I’m in my village which is very quiet I’ll put Bertie on an extending lead and just hold it and he can wander about. If I’m in town I put him on a short lead and clip this to my waist.

      Bert’s really good and always walks on my left (probably be your right in the States!). He just potters next to the scooter and I really enjoy our walks x

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  3. kneillbc

    Jak, I can’t imagine having a family that ignores someone who is ill. Of course they knew, but they were in denial. Is this the family MO for anyrhing ‘uncomfortable’! To ignore it and hope it gors away? It’s very hard to move past that. If you do want this cousin in your life, reply to her text. Move forward, don’t dwell on the past. She is probably so embarassed that she had no idea how to say ‘can we get together?’. I’ve managed to re-connect with a few prople. People who I know are good, kind people, who didn’t know what to say or do. I find a direct, specific invitation is the most effective. Not the ‘come by someday’, but ‘Are you free for tea on Wednesday, let’s catch up’. I’ve discovered that for many, it isn’t selfishness, or carelessness that keeps them away, it’s not knowing what to do, or say. Some of these people I have reached out to haven’t responded, which is their loss. I have re-kindled a couple of friendships that I value very much now. In fact, one or two are that much stronger and better, because we have had some bumps, and we’ve moved past them.
    As well, just because someone was a total idiot 20 years ago, doesn’t mean they still are. When I was 20 I was pretty self-absorbed. Didn’t understand illness- why couldnt people just ‘push through?’. With experience, that perspective has changed, of course. I am much more understanding of people’s needs and limitations- even before I got sick- maturity can do amazing things.
    That said, you can also choose to say ‘Too much history. Move on.’ I’ve actually formed a few new friendships since I got sick. Others whose lives were ‘imperfect’, where the world seems to want to ignore them. For very different reaons, all of us. I find I don’t have to pretend to be the ‘old me’ with them. I’m just me. And they are okay if I call them five minutes before we were supposed to meet, and have to cancel because I’ve had a nasty reaction. We talk about the fact that there is some thing special about people who have seen the darkness, and fought it. We understand something about life. Something you cant quite put into words, but it creates great joy and insight. Our priorities are different. We don’t have condos in Whister, and go to Hornby island every summer for a beach holiday. We don’t go out to the bar- each one of us for different reasons. We all have children who were very sick infants and toddlers. Very, very sick. So we understand how fragile and temporary life is. Our children all survived, and they are starting to thrive. I’m rambling a bit, but, it IS possible to create new relationships, to create your ‘family’, including blood relatives and ‘selected’ family. The support we are able to give each other is huge. There is the emotional side, but also the practical. I’m feeling extremely rough right now, so my friend is brining our daughters to dance camp every day this week. In exchange, she has my car for the week (not like I can drive anyhoe this week.She’s got scads of energy, so she’s helped me with clearing out my closets, etc.. In exchange, the Hubs helped her research a new laptop (he’s a bit of a computer nerd, and she is an artist). It’s rarely a completely ‘fair’ exhange, but as long as it is unfair in both directions, it works out in the long run.
    Good luck, Jak. I hope you find some other ‘kindred spirits’ to bring into your life. Even the most introverted of people need some human contact. Homo Sapiens Sapiens is fundamentally social creature. We arent meant to be alone all the time.
    Oh- and good for you for deciding to no longer ‘hide’. All it does is lead to conflict and hurt. True, nobody wants to hear about your health all the time, but its a pretty damn defining part of your life. Never mentioning it isn’t fair to yourself!
    Goodness, Ive gone on. Bottom line, Im sorry you have cowardly relatives!

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