The only way I can talk about this topic is from my own experience and so that is what I intend to do… What happens when someone you love has a chronic illness, autoimmune disease or disability? What do you do? How do you cope? … One of the hardest questions you might ever have to ask yourself and probably one of those questions you try not to think about; ever. Its not for the faint hearted. Divorce courts are full to the brim with healthy couples who couldn’t go the distance, so what chance does a chronically ill or disabled couple have??
Years ago when I first started noticing symptoms I worked hard to hide them and the more frustrated and unable to control my symptoms and pain the more I vented on my partner. I felt awful and he became the place where I put a lot of my fear and anguish. He didn’t deserve any of it; but neither did I. I desperately clung to the career I loved, the body I knew and the life I had planned and it was heart breaking to watch it unravel in front of my eyes.
When things got very bad and I could barely function there was no more ‘running’ and we finally had to take stock of where we were at and what it meant for our future together. Did we have a future together? At first I was determined that I didn’t want him to stay with me out of pity for me and I told him to leave. It was probably more like I ordered him to leave because I felt he could start over again, have a normal life, find someone healthy and I would have been truly happy for him. I begged him more than once to go and each time he said he truly wanted to stay, not out of pity or duty, but because he really felt that the good we had far outweighed the bad. I believed him, it wasn’t easy, but I still believe it today. The good we have far outweighs all the bad.
The truth is that nothing about being married and sharing your life with someone else is easy. Nothing about having a happy and healthy relationship is easy. People who tell you otherwise are stuck in some sort of Disney fairytale or lying. Good relationships are ones where two people work together as a team, and do whatever it takes because they respect each other, care about each other and most importantly, they love one another more than they want to let go. Slowly, people started to tell me “you’re lucky your Hubby stuck by you!” To them I always say BS! Luck has nothing to do! Luck has nothing to do with a successful marriage or a successful life; It’s hard work. It’s commitment. It’s respect. It’s growing. It’s being prepared to do whatever you need to do, whenever you need to do it… and finding the beauty inside each other; that thing that no one else sees and trusting someone with your life and your future. And yes, there are all those little things that you don’t want to miss out on sharing with each other; ever. Years later I realize I wasn’t lucky my hubby stayed. We both are. He wouldn’t be the man he is today if things had gone any other way.
Challenges will either bring a couple together or tear them apart. I didn’t know which way it was going to go at first but we took it one step at a time, one day after another, one heartbreak at a time and that’s what we have been doing ever since. I won’t sugar coat the fact that sometimes it hurts that I can experience things that my hubby doesn’t understand. I go through things and go to places he will never know unless it was happening to him too. Sometimes I live on the edge of giving up and despair but I also learnt that we are not alive just for our own reasons, sometimes we live for others, because we love something more than we love ourselves. I didn’t know that before I got sick, but I know that now. Sometimes when I can’t think of a reason to go on, I do it for him.
Being married to someone with an illness, health challenge or disability makes you grow in ways you could never imagine. It makes you let go of the less important and unimportant issues in life. It will also make you face a lot of things you didn’t know existed and have to find new ways to express your love and develop new communication skills. Real intimacy, real vulnerability and real love. In my case I had a voice before I got sick, but after I got sick I realized how and when to use it.
Today I am proud of who I am, and all I have been through, and I don’t feel like half a wife or less than my husband deserves. I still feel like part of a working team. One that has been to hell and back, stared into the abyss together and have turned some of the worst challenges into a life together. I AM a wife. I am also a wife with health issues, but still a wife in every sense of the word. We laugh together. We cry together. We dream together. We hurt together. We talk together and we still drive each other crazy… like any other couple.
I know that while he sees me go through some indescribable battles I also realize how hard it must be for him to watch me go where he can’t go. I told him once, in tears, “I would rather go through every second of this pain and struggle than watch someone I love endure it,” so I know it’s not easy for him either. How many people out there could honestly watch someone they love go through rock bottom and feel so incredibly powerless but still not look away or walk away? Not many. That means a lot in book.
Today we have a mutual respect for who we are and what we go through. We have changed in many ways too. Learnt a lot. Grown a lot. And we aren’t afraid to keep learning, feeling and growing together. We write our own rules as we go and are always prepared to get up and start again. Chronic love is not easy. Loving someone who has health challenges and an unknown future can be very challenging and not for the easily scared or emotionally immature, but it is one of the most wonderful, life changing and life affirming things you can ever do.
Prior to getting sick very few people ever stood by me, fought for me and never let me go. I didn’t know how much I could love someone and love myself and I had to learn these under the hardest conditions imaginable. But I have learnt so much about love, forgiveness and hope since I got sick and I for that I am truly grateful.
Much love D.