My Family Is Healthy, but They Still Live With Chronic Illness


OK, so I am the one who lives with the pain in my spine and the frustration of not being able to do anything. But while we (those of us who live with chronic pain) push through our issues, we sometimes forget that it’s our family and friends who take on our daily pain and have to deal with it just as much as we do.

My friends: It’s obvious that most of my friends don’t get it. Where have they all gone? I haven’t heard from any of them for so long. But maybe they got sick and tired of me saying I couldn’t make parties or get togethers so they stopped inviting me. They no longer check in with me to see how I am – maybe that’s because they see it on social media. But when you take on a disease or an illness, the friends you thought were there for you just seem to disappear after a while. Sure, they have their own lives, their own families and their own problems, but it’s just sad that the illness not only hurts you, it can also hurt your friendships whether you like it or not. I have a handful of real, true friends who check in with me but there were a lot more who haven’t bothered to check in with me or even reply to my texts or calls when I have reached out to them. That hurts. And thanks to my chronic pain, I haven’t been able to make the extra effort to physically visit them. So I guess they have lived with my chronic pain just as much as I have.

 

My parents: My mum and dad should be relaxing in their retirement and smiling about the three beautiful girls they raised so well. But instead, they are constantly on standby to see what help I need next. My mum has to go into caretaker mode when I have these spinal surgeries and I am stuck in bed for a three-month recovery each time. She does the school runs, shopping, clothes washing (for my family of seven!), dog walking, cleaning up in our house, tidying, cooking and the majority of looking after my five kids because I am in bed in huge amounts of pain and not able to move. Over the last three years she has spent nine months doing this for me. She and my dad are always having to pick up the pieces for me and have to save me in so many situations. If I get struck down in pain and can’t pick up the kids from school, they have had to be my medical team and ferry me to and from doctor appointments. They have had to wheel me around in wheelchairs at airports and negotiate putting me on planes, I have been a constant burden on them in so many ways with my pain and that’s not fair. I long for the day when they don’t need to worry about their youngest daughter and can relax and breathe.

My husband: My poor husband. I am not the fit, active, bubbly, social person who loved life that he first met and fell in love with. Every time I have been in pain over the last six years, he has felt that pain. He has lived my illness with me every step of the way. He has had to live with a woman who feels like a broken, sad, painful shell of herself and just wants to be well again. I feel I have let him down in so many ways. We have had to cancel trips, come back from holidays early and he has had to save me so many times.

He has become a carer a lot of the time, rather than a husband. Love life, what’s that?! Romance, what’s that? Being in bed in pain and feeling terrible doesn’t exactly make you feel sexy or romantic. But he has had to live my journey with me, being stuck at home and not able to take me out and have the best fun we used to always have. He has become a homebody with me because he has had to be. He has had to look after me a lot, he has had to be mum and dad to five kids sometimes, and he has had to take care of me. But he didn’t ask for this life! Neither did I, but it’s happening to me.

It’s equally as hard on a spouse who becomes your carer, and is forced to live a life of pain and struggling when they aren’t in pain and shouldn’t be struggling. I can’t wait for the day we can go back to living like we used to: dinners out, heaps of laughs, being totally in love and hanging out as best friends. But I fear the damage that these years of pain have done to our relationship at the same time. Me being stuck in bed has put a huge strain on our relationship, and things have changed. I just feel sorry for all the spouses out there who have to go through this with a partner who is in chronic pain all the time. I don’t know how I would take it if the shoe was on the other foot. There are no words to thank him enough and I will spend the rest of my life showing him how thankful I am. He is amazing.

My kids: My kids had no idea when they were born that their mum would be stuck in bed in pain for a good six years of their childhood. I put up with this pain in my back for years before it was something my son said to me that triggered me to finally see a doctor. He had been taking part in a school ten pin bowling session which had been run over a few weeks. I came with my younger son to pick him up after the last session and there were a lot families there. I asked why everyone was there and he looked sad. He told me he had to play in a team with another family because I wasn’t there. I asked him why he hadn’t told me about the “family day” bowling session. He looked at me sadly and said, “I didn’t bother telling you because you always say your back is too sore and you wouldn’t have been able to do it.” That was my “ah ha” moment.

The tears welled up in my eyes and I couldn’t believe it had gotten to this point of my kids hearing me say I couldn’t do things with them so often because of my back pain I was shocked. How could I let them be so affected by something I was going through and not even notice how sad it was making them? It was right then and there I rang my GP who referred me to my spinal surgeon and the process started. It would be many years of treatment, injections, failed surgeries, major ops, recoveries, months in bed, pain, meds and more. Through all this I became even less able to do anything with my kids. But it was all in aid of getting better so I could eventually be able to do things with them.

Thanks to that comment my son made, I got checked out and found out there was some major damage in my spine. I feel for all kids of anyone with chronic pain though. You can’t do things with your kids. My husband takes the kids out and does things with them. I wish I could, or could even just watch it happening. My kids live with this chronic pain in their lives and have to deal with the fact that mum can’t work or do things with them still because she is in so much pain. It’s like they have a mum but she is missing or away. I can’t make assemblies at their school or school plays or church masses because I can’t physically sit there for long. I can’t help in the school canteen, be a sports coach or help with school excursions because I am in too much pain. I can’t play soccer or basketball with them, and when we are in our pool I can’t give piggy back rides or play the games we used to. They have to miss out on a lot after I have surgeries done because I can’t drive them anywhere. My kids struggle with a lot of my illness and chronic pain too. And that’s not fair as they need a strong mum who is there for them, but a lot of the time I can’t be the mother I want to be or the mum they need me to be.

There are also mums I meet at school who are great, as they offer to help me with car rides for the kids or lifts to sports. I have great neighbors who are there for me and offer help if I need it. Even strangers at the supermarket or in a shop who see you struggling offer you help. You change all of these people’s lives too. Everyone around you is affected by your illness and chronic pain. I think maybe that’s why it’s easier to stay home and become a recluse, because then you have less chance of running into anyone who may need to help you.

I’m not good with accepting help from anyone. It can be embarrassing and makes me feel even more useless than I already feel like I am. But I guess when we stop to look at who our illness is actually affecting, we are not alone in it at all. Our whole world of family, friends and even strangers we haven’t met yet are all involved at some level. So it’s important to be kind, be patient and accept help from those offering it. My illness is a very stressful and emotional journey for those around me too, not just for me, and I need to accept that and love them all that little bit more for still loving me so much and staying strong with me through it all.

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Thinkstock photo via monkeybusinessimages.

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