I was first diagnosed with severe chronic neutropenia in 2006- I was in my mid-twenties then. The diagnosis came about when I decided I’d like to try and have a baby. Due to being fatigued, having regular colds, sores popping up that just didn’t quite go away, and the feeling of not quite right inside, I thought I should get some blood tests and see a doctor. I thought maybe my iron may be low or maybe I was working too much. After completing the routine blood tests, I received a call the following day from my doctor who asked me to come in to discuss the results in person.
The conversation unraveled that my blood tests were very concerning. That my white blood cells were close to non-existent the doctor cautioning that I was at great risk of developing life-threatening infections due to my severely impaired immune system. She made a few calls and I was sent to a specialist at the cancer care unit within the hospital.
This was the start of becoming comfortable with hospitals and many painful tests and repeating the same story over and over again over many years. Giving my arm for blood again and again. Repeating a story to doctors and health specialists who were perplexed by my bloods and bone marrow samples. My bone marrow became special in Australia taken to other specialists who may be able to shine a light on this woman which was me. I still wanted that baby. When I asked my specialist if I could have a baby he said if I really wanted a baby, I should do it now while I was well enough.
That he couldn’t give me a life expectancy due to the risk of the chronic neutropenia turning into a blood cancer and life-threatening infections that were now becoming a theme. I went ahead with the business of making a baby.
In 2008 I had a wondrous baby girl who keeps me sane; she made getting up in the morning worthwhile and real. Children and dogs- they still want you even when your very unwell. Dogs and children don’t see the illness. I like that about them, they get me up.
Over the years I have had numerous lymph nodes tested, bone marrow tests, scans and more scans followed by blood tests, samples from what feels like every part of me. It becomes very exhausting, accepting this is it. Another infection, another upset tummy, another very low reading on my cell count, and another morning waking up tired.
Although I’m positive and upbeat I have days where what I need is a big cry-feeling as though I’m going down that rabbit hole and trying to learn to live with something that is difficult to accept.
I have been hospitalized regularly in the first few years due to the nature of the infections attacking my vital organs when I was not yet taking G-CSF injections.
To be honest, I was naive for a long time. I thought if I did everything the right way-eating only organic fruits and vegetables, never having sugar, not drinking coffee switching to herbal tea, and doing all of what they say in google searches is health promoting- I’d cure my blood disease. I didn’t realize this would be a [chronic] disease. I would have to learn to live as well as possible.
I appreciate one doctor with a good sense of humor. I asked if a certain diet fix or a certain vitamin could help me? The doctor replied, “If I thought a multi vitamin would fix it, I’d give you one.”
I still see this doctor to this day and appreciate him very much for saying things as they are; he’s warm, friendly, and to the point. He was one of the doctors admitting early on that sometimes doctors just don’t quite understand why something happens.
Although I was often sick with infections that put me in hospital, I still managed to work full-time and study. A few close friends and my direct supervisor knew what was going on, but I would get back to work once the infection was sorted out.
I learnt to bluff to keep my job. In hindsight, I would not suggest working too hard to anybody living with a chronic health issue; I feel the stress added to me becoming more unwell and trying too hard to do it all.
Among all the tests and hospital stays I ended up living the full catastrophe- raising a child on my own and trying really hard to hide days off for appointments from my workplace. I had a very hard time I was raising a child on my own, coming to terms with my own fragility, trying to pay off a house, walk the dogs, call my friends, look fabulous for work, cook exciting meals, and keep a great attitude. It was my close-knit friends who made me cups of tea with whom I could cry, laugh, and got me through the difficult time when I was near giving up.
Things change, that’s for certain in any human story. In 2013, when life and my health felt more stable, I was fortunate to meet my husband. He came into my life just the right time to add life- my new beginning, the love of my life and a friend who’s my rock.
With my husband’s support, I found a new specialist who helped me understand I couldn’t cure the disease but I could manage it so I could have less late-night trips to hospital with fevers and infections. I started on G-CSF injections in late 2015 after becoming severely ill in which infections attached my vital organs. I had a lengthy stay in the hospital for treatment and then had to learn to administer injections myself, which I continue to this day.
Living with Severe Chronic Neutropenia (SCN) changes the way you do the living. We’ve lost many things I used to think where needed, like certainty and a house that is part owned by you. Although after many close calls through the years, I found what really matters in the end is what you give to the world through attention and being in it wholeheartedly that nothing is ever certain at all for anyone, life can change in a moment.
I am comfortable with the fact we all come and go death is certain that we know so make your time count. Due to my health, I’ve been learning to accept that I can’t participate in the paid work force as much as I used to. I am grateful for my husband who picks up the slack and reminds me that we are more than the money we contribute within a family.
I continue to participate in paid work two days a week supporting people with complex physical disabilities. The work can be hard when I’m having an off week, but I have the connection to my friends and utilizing my skills and education is important for my emotional health and esteem needs. In addition, I volunteer a number of hours each week at my daughters’ school to help teach a group of children primary ethics. It’s a wonderful experience for the heart and it helps me out of my worries. Volunteering can be a really great way to stay connected to people and use skills that were once valued in your paid roles.
This experience of living with severe chronic neutropenia has led to creating a simple meaningful life with my family, one where I really don’t care much for material things. A simple life where I remind myself daily is this a good use of my time; we all only have limited time here. Living well despite difficult weeks leads me to share my time with close friends, family, and dogs and birds who come to visit the garden. Living well means being ultra-kind, stopping when a person on the street wants a little conversation. I think that kindness was always intrinsic to me although more than ever having experienced real isolation myself through illness I really aim to go out of my way to be someone who calls somebody-someone who invites someone over for a cup of tea to check in.
Things I have found unhelpful over the years are conversations that begin with: Have you tried this remedy? But you look so well, you can’t really be sick? That must be nice to have so much spare time now that you’re not working full time what do you do? Such conversations are very offensive. I have also found personal googling very unhelpful it only leads me down paths where I find myself blaming myself for a disease that isn’t my fault and thinking some new super herb or diet may fix things.
Advice I’d offer to others: See professionals; Seek out information from real sources; Get second and third and fourth opinions; and try and be kind to yourself. It’s not your fault. Ask for help when you need it- I’m still working on that one.
Other things that help include: Riding my indoor bike everyday- it’s helpful for my joint, keep me fit, happy, and means I don’t get infections I used to pick up at the gym. I find nature restorative. Being in the company of dogs [or other pets] is the best medicine. We have two rescue dogs who console me most days when I feel lonely and get me out of the house. I practice meditation for pain and stress relief daily. I use heat and ice packs for pain relief during the night. And, I read lots of books so going to the local library is a free treat. I have a really great group of AMAZING friends who are funny, real, and remind me that some things in life are just right even when you feel sick. I have a fabulous family; they are great with helping each other finding reasons to carry on and who I find very funny. I find solo discos dancing to happy music helpful.
I won’t deny that I have hard days where I want to give up; hours where I am beyond exhausted from pain and infections that seem invisible because I look well. I don’t know how someone living with chronic neutropenia is meant to look but I don’t fit the poster image.
To those living with severe chronic neutropenia hang in there. I heard recently happiness doesn’t have to be your own to be enjoyed. It’s not an easy ride. Although there is a rather small bunch of us living in the world [with neutropenia], the playful part of me recalls when I first explained to my daughter what it meant that mummy got sick a fair bit and why it was important she really washed her hands well with soap; why somedays her friends couldn’t come visit when mummy was sick-I said mummy has mermaid blood. I said I am from the fairy world that’s why my bloods a bit different, and my daughter she still believes it. When she says I am the only one who can make her food the way she likes it, in my experience what keeps me going is loving others and the tenacity to carry on until I don’t.
And that just may be one of the best remedies there is- when someone you cherish believes your magic.