I am not alone, I know I’m not alone because when I share my story, I often meet other women who have a partner with a chronic illness. And yet much of the time? I do feel alone; physically, socially and emotionally. I attend many, if not all, social functions by myself, as my partner only has enough ‘health’ to get through a day at work and then he’s done and has to take his meds, eat (if he can), and sleep.
Except he doesn’t sleep. He gets anxious, then walks the house and talks to himself (hello side effects of medication) and then ends up sleeping on the floor so as not to disturb me with his crying over debilitating stomach cramps and spasms. Then he wakes for work, takes his meds, eats, caffeinates and we repeat this cycle day in, day out. Until there is a spike in his illness, which he hides for a time, not wanting to be a burden. Until he ends up in a pain riddled heap and then it’s a crisis involving doctors and hospitals. Or until he becomes depressed about his lack of ability to contribute more, to parent more, to coach his kids’ football team. Then he ends up in a depressed heap and then it’s another crisis. And then he’s stabilised and life returns to ‘our normal’. Repeat this cycle. Endlessly. With no hope for a recovery on the horizon… because #chronic, not #curable.
There are only so many times family, friends and colleagues want to hear, ‘yep, all is the same.’. Well-meaning loved ones want to solve the problem because every problem has a solution, right? I love that people care, I really do, and as a born people pleaser, I don’t want people to worry about us. But seriously? Do you not think we’ve tried every single alternative and medical solution on the market? Do you think I haven’t Googled long into the night looking for overseas options? Do you not see that every cent we earn goes on treatments and meds, and second and seventieth opinions with specialists? And please don’t tell me that there are others worse off. I so understand this, and have enormous empathy for them. In fact I think I feel their burdens more keenly as I know a little of what they suffer silently. But it’s all relative and I live with this day in and day out and it wears me down.
To be honest, I don’t want to talk about illness all the time. I just want to talk about something else. My life at home is ruled by pain, the next medication ‘drop’ from the pharmacist, rest needs and mood fluctuations and sometimes I can’t talk about it because nothing improves the situation, so why keep endlessly discussing it? Except when you don’t discuss it, people forget or they think all’s well. They get pissed off that at the last minute you cancel him coming to their wedding, despite telling them when you sent the RSVP that this may happen because we just have to take each and every day as it comes. Family get frustrated by the seeming chaos that you live in, that you’re always late to family occasions, or that your kids are dishevelled and in a foul mood. And you can’t be bothered explaining the fight that it was just to prop him up and get everyone to that Sunday dinner, because you just want to forget about the hell that it was and you want your kids to have an okay time for a few hours.
As I do my nightly scroll through social media and blogs, I inevitably come across the posts about sharing the load as parents, ensuring that you practise ‘self-care’ as a mother and wife, the top ten ways to express love to your partner and, my favourite, the articles about ‘fun things to do on date nights!’. The third person in our relationship, #chronic, ensures that our relationship has been tested beyond measure, and we hang in there and we know that there is love and care and compassion and empathy, but it’s under layers of medication and pain and illness. I don’t hope for dates nights, I just hope our relationships survives because the stats on marriage breakdown due to chronic illness are depressing beyond words. And I get that, because it’s hard, so hard, to have this unseen, awful entity in your marriage and family, but then in moments where illness is stable, life is really wonderful. You get to see the person you married underneath the layers.
And how crap would you be for leaving the sick person anyway?
But let’s not go there, because we’re in this for the long haul. Despite the fact that we drew the short straw in the marriage vow about ‘sickness and in health’ (Hello health?! Where are you health?!), we are committed and love each other and adore our children and they adore their chronically ill parent.
Here is the part where I’m meant to list my ‘Top Ten Tips for Living with a Partner with Chronic Illness’. Because the best blog posts end with poignant ‘takeaways’ that you can implement in your own life. I don’t have ten tips I’m afraid – just my own experience and, just as every chronic illness varies from person to person,what works to get you through the days will vary too.
For me, I find work a wonderful relief. At work I am not defined by anyone else, just my own performance. Yes okay, I bury myself in my work. I’m totally cool with this right now because I know I am good at my job, it brings me great joy and it also gives me a break from the reality of chronic illness. I also have had to accept that I have to create my own social life and be okay with the fact that I’ll often be going alone. If I look at the bright side of this, often my friends are dragging husbands along to events and promising them that they will leave early.
I rely on my village for support with my children and getting them to sporting matches and birthday parties in times of illness flare ups and I’ve had to accept that my children are going to have to adapt to having a parent with a chronic illness. I can’t hide it from them in any way and I can’t protect them from the effects of it – I just have to hope and pray that they will grow up with great empathy for others.
I struggle the most with remaining empathetic, because sometimes I just really don’t want to deal with a flare up in illness which means I end up hosting a pirate birthday party for 30 kids alone. Sometimes I just want to slam pots and throw cups and scream ‘can’t you just push through it, buddy!’. Sometimes I do scream. And cry. And threaten. And beg. But I’ve met a few gorgeous people who live with chronic illness themselves, and it’s good for me to be with them as they remind me that my partner fights everyday to be okay, as they do. My compassion rushes back to me, and I remember how much I love him. I go home and I’m okay…I can keep doing this.
It’s a long and lonely road loving, living with and parenting with a partner with a chronic illness. I live in hope that we are all more empathetic, caring and compassionate people because of our experiences. It would be easier sometimes to be bitter and ask ‘why me?’ as we lay awake each night. But, as with everything that is hard in life, there are moments of beauty and joy and I kinda just have to live for those moments. I also live in hope: for medical advancements; that my children will be okay; that we will all make it through. Just keep on walking forwards, I suppose.