Mourning The Person You Were Before Chronic Illness

Monday 28 February 2022

Grief and mourning are something that, unfortunately, over the last two years we have become more aware of. We see it everywhere – on the news, on social media, we read it in the newspapers – and we are living it each day, whether you have lost someone during the pandemic, because of the pandemic, or whether you are just feeling the heaviness of all the changes it’s caused us to have to make.

In my writing, whether it be for this blog, my own personal blog or my books, I aim to always be honest and relatable. It is so important to me to have the reader feel like they are being understood and feel less alone. I don’t talk about my illnesses any more. I used to be very vocal online about chronic illness and I worked hard trying to fundraise for biomedical research for a few years, then in 2015 I became pregnant with my elder son and that’s when I became silent. I was judged by the M.E. community online and called selfish, I was told I couldn’t possibly be as ill as I say if I can have a baby and I was told that I was already a bad mother for choosing to have a baby. I spent over eighteen months going through things with my doctor and having very in-depth conversations with my husband about how we would handle it before we even considered actually trying to have a baby. I then got targeted in a private situation within my husband’s family that was very painful for us and my illnesses were used to judge me and the kind of mother I would be within that. It was then that I changed how I went about interacting with people and I decided to keep my health between me and my husband. I am a huge advocate for mental health and this is why I’m making this post more of a personal level because I don’t want to be just another person preaching facts and telling people to open up and talk but not actually doing it myself.

2020 was a year nobody expected it to be and yes, it was very difficult, it was terrifying; I never thought at thirty-three I’d sit and have a conversation with my husband about how one of us would continue raising our children without the other. I have to say, though, that there was a lot about it I loved: I didn’t have to meet people’s expectations or pressures any more and I could live my way. I, like many of you reading this I’m sure, was on the high-risk list, so we as a family stayed housebound pretty much all of 2020. I remember a nurse phoning me from my doctor’s surgery and telling me she had been asked to double-check information with me just in case I got admitted to hospital during the pandemic, and she asked me, “Who will be the decision maker for you should you not be able to make your own decisions?” and the one that really hit me hard, “Who will be responsible for your children should you pass in hospital?” I will never forget the coldness I felt in my body when I heard that question; I was rendered almost comatose for hours, if not days, after that conversation. It got me thinking again about how ill I am day to day and it took me into a dark place I never wanted to be in again. With the help of my weekly phone conversations with my counsellor and my mental health toolkit that I had built for myself, I was able to navigate through all the minefields that it had brought up for me, but it was extremely difficult and in the spirit of being honest, it has been ever since.

I read these posts on social media of people complaining because they couldn’t leave their homes, complaining that they couldn’t hang out with friends and go on holiday etc. and it hit me that they were actually living a life that I and the chronically ill had lived for years: they were living our lives that they told us time and time again we were “so lucky to have” and they couldn’t take it. The amount of times someone has commented to me “Must be great being able to stay in and watch TV all day” and “Lucky for some, getting to nap during the day”, and yet here they were, getting a taste of what it’s like for something you never asked for to halt your life and way of living completely and having to try and navigate how to live with it. I became angry and most of all, I had fallen into a level of despair about our society. There was so much unkindness and selfishness being exuded left, right and centre and everyone was seemingly missing the point. Even once people had gotten a taste of what life was like for us with chronic illness, it wasn’t too long before we were once again the enemy when the government was keeping things closed to protect the most vulnerable, and once again, I became so incredibly irate at the attitude so many people had. I was at home trying to not think about the worst, trying to educate and occupy two children under the age of five, one of whom is on the spectrum and who thrives on structure, and to also support my husband who is also on the spectrum, after COVID-19 left him redundant from his job, and yet there were people saying “tell them to stay in and give us our lives back”, like our lives were somehow less important than theirs.

I saw people eventually socialising again without inviting me, I read on social media that these meetings were taking place and I knew nothing of them, and the feeling from when I was first diagnosed, of being invisible and forgotten, hit me really hard. People not understanding why I was trying to be so stringent with rules and making me feel like I was being dramatic or crazy. It was all very triggering.

From around August 2021, I started to feel the black dog howling again and I was starting to slip into major burnout and depression. My boys were coming home from school every other week with a cough, cold, tonsillitis, and it was never-ending. I felt stuck again, like I had been so many times in the last ten years of battling this life that was forced upon me; I wanted to move forward, to achieve goals and start feeling better about my body and myself but I couldn’t: everything else took all my energy and I gave up on myself again.

I am still trying to pick myself up from this bout of depression and anxiety; every time I feel I’m getting somewhere, another challenge comes along and it’s starting to feel pretty tedious. For the first time in years, I cried in my husband’s arms the other night and told him I hate my body, I hate how ill I am, I am angry at what these illnesses have done to me and my life and how they hold us back. It felt like it had been there for a long time, waiting to get out.

Nobody talks about these things when they tell you about chronic illness. The doctors can’t even agree on whether they believe the illness that is tearing you apart is even real. The grief, depression, despair, shame and guilt are very real.

I have a really difficult time talking about finances with my husband. I immediately feel like I am one inch tall. I feel ashamed and embarrassed. My husband has never belittled me or told me that I am a burden, but my goodness do I feel it. There is a very stubborn, strong and independent women inside me, my soul is as wild as the howling wolf looking up at the moon, and I hate the feeling of not being able to show my boys that I can do all the things that Daddy can do. When I met my husband, I was twenty-three years old, heading to twenty-four and he had just turned twenty-one. He was grieving the loss of his dad and had only just started to believe that there could be a future for him. We would talk about all the adventures we wanted to have together, we talked about the future, getting a house, how we’d want that house to be, chasing our own dreams and careers together, and of course we talked about marriage and children down the line. That all changed suddenly for us and all of a sudden, all our hopes and dreams were gone. All that seemed to be ahead of us was struggle, pain, loneliness and isolation. It was such a test for years on our relationship but we made it through and I’ll never be able to express the gratitude I have in my heart for how, at twenty-three years old, going through his continued grieving and facing his own battle with autism, my husband stepped up for us so that we could do as much as we could with the situation we were handed. He continues to do so to this day; however, he doesn’t care for me as much as I care for him these days, but in the times of flare or illness he is there with understanding and compassion. Even though I’ve not been as lucky in other areas of my life, I am blessed with love in my home.

I grieve every single day for the life I thought I would have; there are always triggers and I want this to be brought to light for anyone in the M.E. or chronic illness community, whether you are the sufferer or carer or relative. Letting go is not a one-time thing, you have to do it over and over every single day. When I wake up with pain all over my body and my head saying “no, please, I don’t want to do this today”, I have to dig deep and find the courage to get up and be all I can be that day for myself and my family. I have to try to not dwell on the fact that this is my life now, even after ten years of living with it, and embrace all the things I have that fill me with gratitude. Some days I win the battle, some days I lose, and some days the battle seems like it is a war.

Grief truly has no timeframe. Whether you are grieving the loss of a loved one, the end of a relationship or friendship, or grieving the life you thought you would have, there is no one but you who can say when it’s been enough. Grieve for the life you thought you’d have because once you truly do that and start to deal with all of those feelings, you’ll start to open up room to start loving the life you have.

If grief is affecting your mental health, please know you are not alone and there are people who can help. Mind charity has a list of people who can help you in a crisis and if you feel you need someone to talk to outside your own network. Please also remember, in the case of M.E. and any other chronic illness, the M.E. Support Facebook Page has a great community who are always willing to help out in any way they can, and both Louise and I are contactable via email.

Thank you for taking the time to read this month’s blog post for M.E. Support. Please do like and share this post and comment about your experience on the Facebook page. You can read previous posts any time on the M.E. Support Blog. March’s edition of the blog will be exploring those elusive “cures” on the internet.