Wednesday 9 September 2009

Grief and Dysautonomia

I remember reading an article early on in my studies about a woman who was grieving the loss of her husband. Only her husband was still alive, but had developed Alzheimer’s disease. Everyday this woman was morning the loss of the man she loved. The man who was disappearing day by day, week by week, but was still sitting there in front of her. I found this article the other day and something in it hit me hard. This scenario is played out everyday for people living with chronic illness although in our case the person morning the loss is you, and the person you are grieving for is yourself.

It sounds strange to say you are grieving yourself. Grief is traditionally related to the loss of a loved one. But what we often forget is that grief is about loss, any loss. When we lose a job or perhaps a relationship we talk about anger, feeling upset or perhaps betrayed, what we don’t realise is that we are actually grieving. There are different types of grieving and grief events. Grief when you lose a loved one has a sort of in built time limit. It’s not that you actually stop loving or grieving for the person, but that the grief becomes a little bit easier to bear with each passing day. There is truth to the old adage time heals all wounds. We need to be able to do this to be able to cope in the here and now. To sustain that initial grief over time can become debilitating and destructive to a person on many levels. It’s not to say that you don’t become upset at certain times, the holidays in particular can be tortuous, but the overall level of grief diminishes and becomes manageable.

But what do you do when the event that brought about the grief in the first place never leaves? How do you deal with something that can cause little losses (and sometimes big) every day, such as a chronic illness like Dysautonomia? Living with Dysautonomia you are constantly reminded that you are no longer the person you once were. From the moment you wake up, each and every morning is a struggle. Just to get out of bed and dress you are reminded every step that you aren’t like other people. Like it or not you are sick and to differing extents, disabled. Each day you are reminded of your loss. It's almost as if you just get that wound to your spirit to heal over and someone comes along and rips the scab right off, leaving it raw all over again.

With chronic illness you may lose many things, your job, your friends, your house, your financial independence, but perhaps the biggest loss living with chronic illness is the loss of You. By that I mean the You who you once were before you became ill. The picture you had in your head of You, and where you fit in the universe. It’s your own personal picture not the one other people have, which can sometimes be dramatically different to our own. It’s often not until you are faced with something like illness, that you realise that you did indeed have such a picture, one to which you were particularly attached.

I know this only too well. I had developed a nice little picture of me which I rather liked. I had finally come to a place in my life where I was happy with my career, my family and life in general. I knew who I was, where I fit in and where I was going in the future. Other people had pictures of me too, wife, mother, daughter, sister, friend….. Then along came Dysautonomia and the Michelle I was died. I know that sounds rather melodramatic but it’s how I felt at the time, and to a certain extent even now. That person I was six years ago is gone. I catch glimpses every now and then but the me I thought I liked, the me I thought I was, the me I thought I wanted, is long gone.

We hear about the stages of grief: Denial, Bargaining, Anger, Depression and, perhaps the most elusive, Acceptance. The funny thing about grief is that it is not a nice clean process: step 1 denial, step 2 anger…….step 5 acceptance. Instead it’s: step 1 anger, step 2 sadness, step 3 pissed off, step 4 really pissed off, step 5 denial, step 6 immerse yourself in Bold and the Beautiful (denial in any other language, or insanity), step 7 bargaining, step 8 depression, step 9 chocolate binging……and so on. Its a messy process and it’s even messier when there is no finality to the loss. When you think you are finally getting a handle on what has happened to your life Dysautonomia can jump up with a sucker punch, to remind you that the loss is still there and the process begins again. There can be many loses when you are ill. Loss of self, loss of friends, loss of family, loss of work, loss of financial security, loss of place, to name but a few, and it can often feel overwhelming. It doesn’t help that you are ill and exhausted and have very few reserves left to deal with these changes.

For me, it was like someone was taking little bites out of me each day: reliability gone, independence gone, punctuality gone, intelligence gone, privacy gone, mothering skills gone, wife, who’s that?, driving gone, coffee with friends gone, dignity gone…….and on and on and on. Each of these loses seemed insurmountable at the time. I had the tears, the anger, the swearing at the universe, I had it all. I’d always been in control, I’d always been independent, I was always the one other people came to for advice and support be it professionally or personally. I could juggle it all with ease. So who the hell is this pasty-faced, fog brained woman in mirror, I see staring vaguely back at me everyday?

What can be particularly hard is that other people are often unable to understand our level of grief. Hell, often we don’t understand it ourselves. I often feel whiney, even now, when I complain about my lot in life. When someone makes one of those comments like “well at least it’s not cancer” or, “I’d love to not have to work” it undermines our right to feel what we are feeling. We are not asking for pity and it’s not about who’s experiences are more worthy or legitimate. We are entitled to feel angry, upset, lost. It is completely normal to feel what ever you are feeling when you experience such a life changing event. We are NORMAL!
So what do you do? I hate those saccharine sweet lines like “When Life Gives You Lemons Make Lemonade”. Do they realise the steps involved in making the lemonade? First, get the energy to get up out of bed. Second, get the energy to care that you have to make lemonade. Third, try and find a recipe book. Fourth, get your brain together to remember why you have the recipe book. Five, grab a coffee to get your brain going. Six, forget the reason you had the recipe book out again and tidy up the lounge. Seven, remember something about Lemons. Eight remember obscure fact that Liz Lemon is a character on 30 Rock, and sit down to watch tapped program, forgetting lemonade completely. Making that damn lemonade is a Herculean task and often you need someone to hold your hand and guide you to the 7 Up.

Talk. Talk. Talk. Talk. Talk. We all need to let it out. Being a psychologist myself I’m obligated to say find a psychologist to talk to about what has and is happening in your life. Being a human being as well, I know that not everyone is comfortable with this option. Hell, I was rather offended when my cardiologist suggested it to me. I’m a psychologist I know the drill. Why would I need to talk to anyone? But I did and I’m really glad I did. You don’t have to see a psychologist per se (although we do have many, oh so many, long, years of training), but there are great social workers out there, or some people may prefer to talk to their clergy. Maybe you have a great friend who has the knack, or you can go on sites like, or blog. What you do need to do is get it out before it begins to stew and ferment. Talking to a professional outside your family and friends is a great idea because they don’t know you, you can talk freely and they have no stake in things, other than to help you find a path through the maze. You can’t often talk about the issues you are having with your family's reaction to your illness with a member of your family. And we often don’t want to burden our loved ones with our own issues, particularly the darker emotions and thoughts that can arise. Finding support, be it though the Internet or a group you meet with in person, can also help. It’s nice to know you are not alone and that there are others who are having, or have had, the same experiences.

Letter writing is a really useful technique to help organise your thoughts and get out a lot of what can build up inside. You can do it anywhere, any time, and you can do with it what ever way you want. The idea is that you write yourself a letter about what you are feeling. It was a technique I often used with family members of my patients with Alzheimer’s. The patient never saw the letter it was for the families to express what they felt, to let out that raw emotion. Some would come in an read it to me because they just needed to share, and to know if what they felt was normal. Others simply did it for themselves and then either put it away, or destroyed it in a symbolic freeing of those burdens. A letter can be used to help family members understand what you are feeling, or just to let you lighten the load. There’s no right or wrong. I wrote a letter myself last year. I kept it hidden for a long time, believing others would think I was completely insane. But then I gave it to my immediate family and it helped them understand. Then to a close friend. And eventually I posted it on my blog, which was equal parts freeing and probably the most scary thing I have done in my life. It’s like those dreams where you find yourself stark naked in a crowd. I’ve never been as naked as I was the day I posted it on my blog.

There are a number of other ways to manage grief and stress that really deserve their own blogs. Things like: Art which can be a great outlet be it writing, painting or music. (No one else even needs to see it); Music therapy; Yoga; Meditation; Gardening; Relaxation techniques (there are techniques to fit everyone); and, many, many others. It's about finding what works for you.

Developing a new picture of you is important. Accepting what you can’t do and embracing what you can is imperative. Allow yourself to grieve. It’s okay to need someone to hold your hand as you navigate along that path. I am a work in process and I still have those days when I want to crawl into my bed and cry. Being a mum and wife doesn’t often give you that opportunity, so you have to find a way through. Sometimes you just need someone else to give you a reality check, and point out what you do have. For me that happened a few years ago. I saw leaving work in particular, as a huge loss at many levels. Then my youngest son turned to me one day and said “I’m so glad you are home all the time, Mum. It’s way better”. He liked that part of the new me and I’ve decided to embrace it too. I may not be able to bring in an income but I get to spend time all my “good” time with my kids and family now. And that’s a much much bigger pay day.

(Originally written for 12 More


  1. Michelle that was Brilliant..Some thing i really needed to hear at this point in time...Your right grief come's in all sort's of form's and can hit you so hard you just don't think you will ever get up and the Loss of people you need most..Can be the biggest slap in the face and knock you right off your feet..But i guess life goe's on..
    Thank you again Tracey..

  2. Hey Trace thinking of you babe. Michelle xxx

  3. You've nailed it again Michelle - thanks again!

  4. Thank you Michelle for this post. I didn't realise what I'd been going through, but now I understand a bit more. I have hated feeling such loss, especially of my old self. I hope to be a psychologist one day, and hopefully I can help people going though their own greif. Rach xxx

    1. Glad it could help a little Rach. YAY for wanting to be a psychologist. I loved my old job, it was difficult and heart wrenching at times, but also very very rewarding.

  5. Man I think you read my mind......I too have trouble with the acceptaence

    1. Me too. Every time I think I have a handle on it things go pear-shaped yet again and I have to start from scratch.

  6. I have said many times that our grief is harder than a death because it isn't one event but many. Having to leave work was such a huge thing for me and it took a long time to accept that I could no longer be the person I had been. I have gone through many levels of grieving and as I my health has got worse I have had to change my idea of who I am and what I can do quite a few times. If I didn't have the online M.E. group that I belong to I honestly don't think I would be here. I know that sounds dramatic but without their support I would in no way have been able to cope. Thank you for your words Michelle.

    Caroline xx

  7. I think the hardest thing about my having Bob is that I was accepted to an Ivy League Univ--and went to two classes...and had to quit. I'm 57 now and pretty much hang out in my purple robe and watch ID TV. Or argue with my SO that it is NOT just depression. Suicide sounds good, but I keep hoping that something will change. It did when I went on Lopressor for MVP and Xanax calmed down my irritable nervous system. I was NORMAL. But when generics came out, I was back in bed after about two weeks.

  8. Thanks so much for writing this. I can relate so much to the scab re-opening all over again. I'm finding it so difficult to try out different treatments, try to hold back my hope, get hopeful and excited anyway, then disappointed, hopeful, disappointed over and over. Recently I tried out a new pain medication and felt what it feels like to not be in so much pain and cried with happiness. I'm not sure if I can continue taking it because of side effects and last night I felt what it's like to not be on it, and cried so hard at feeling the pain all over again. A week on this med feels like such a tease of a life which is more free & functional and now the scabs open again. Reading this is really helpful. :)


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