I remember reading an article early on in my studies about a woman who was grieving the loss of her husband. Only thing was he was still alive, but had developed Alzheimer’s disease. Everyday this woman was morning the loss of the man she loved 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 it just seemed to hit a spot right down deep. 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. (I’m not discounting that others grieve for us but that’s a whole other blog.)

It sounds weird to say you are grieving yourself. Grief is usually 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 and feeling upset or 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 grief becomes a little bit easier to bare with each passing day. There is truth to the old adage time heals all wounds. We need 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 get upset at certain times, the holidays in particular can be tortuous, but the overall level of grief diminishes.

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 like a chronic illness? Living with Dysautonomia (or as I’d like to call it Bob) you are constantly reminded that you aren’t the person you once were. From the moment you wake up, every morning is a struggle. Just to get up and get dressed 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 as if you just get that wound to your spirit to heal over and someone comes along and rips the scab right off to make it raw all over again.

With chronic illness you may lose many things, your job, 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 got sick. 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. We all have this picture even if we are not conscious of it. It’s often not until you are faced with something like illness that you realise that you did indeed have 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 Bob 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 3 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 Bob 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 cannot often understand our level of grief. Hell often we don’t understand it ourselves. I often feel winey, 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 say (although we do have many, oh so many, long, years of training), but there are great social workers out there, or some people prefer to talk to their clergy. Maybe you have a great friend who has the knack, or you can go on sites like 12 More Pages, 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 families reaction to your illness to a member of your family. And we often don’t want to burden our loved ones with our own issues. 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, anytime 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 get out that raw emotion. Some would come in an read it to me because they just needed to share it and to know that 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 ages thinking others would think I was a complete nutter but then I gave it to my immediate family and it helped them understand, then to a close friend, and eventually stuck 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 put 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.

Developing a new picture of you is important. Accepting what you can’t do and embracing what you can. Allow yourself to grieve. It’s ok to need someone to hold your hand as you navigate along that path. As I have said 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 need someone else to give you a reality check and point out what you do have. For me that happened last year. I saw leaving work in particular as a huge loss at many levels, but 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 to. 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 off.

Cheers

Michelle:)

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