This week I thought it would be useful to give tips for the people who actually live with someone with a chronic condition; partner, spouses, parents, friends, anyone really. I starting writing this blog and then realised that it would be much more interesting to know both points of view, mine (the one that is sick) and my husband’s. So I decided to do a little interview with him and then add my own thoughts.
Me: What is the hardest thing when you live with someone with a chronic condition?
H: It’s seeing them go through the pain. Especially if you met them before they were diagnosed, because you know what they are like without the pain. You feel powerless towards trying to make them feel better, physically at least.
Me: What can you do to support them through flairs or particularly bad days?
H: I think one of the most important things is to try to put a positive attitude for them and try to push them towards positivity as well. It’s easy to spiral and loose yourself in the pain so it’s key to be there for them at difficult times. You also have to step up and help with the general tasks that they normally have to do as part of their daily routine. It’s also important to listen to their needs, because they know their body more than you do.
Me: What do you think you were doing wrong when I was first diagnosed?
H: Perhaps I didn’t appreciate the gravity of the situation and probably because of that I didn’t offer as much help as I should have. It’s easy to assume that everything is fine, because someone that is dealing with chronic pain will not usually look as though they were in distress.
Me: What did you learn from living next to someone with a chronic condition?
H: I leant that the symptoms for chronic pain are not always visible. I have learnt that my partner knows her body better and I have learnt to listen to her when it comes to this. Watching a person with chronic pain try to get on with their lives, despite everything that is happening, teaches you perseverance and how to be resilient, even when faced with adversity.
Me: What do you think people that don’t live with someone with a chronic condition can’t see?
They can’t see the suffering and the intensity of it. They can’t see that you can’t plan anymore, on a day to day basis or for things like holidays, because you don’t know what your situation will be then.
Me: How do you see your future next to someone with a chronic condition?
H: I think you have to take every day as it comes, enjoy the good ones and step up on days where they are not doing very well to provide support. Try to be a team.
In my experience all my relationships suffered since my health went out of balance. It hurts to say that the years that should be our best, the beginning of our marriage, having our first baby, were in fact filled with sadness, fights and silences. It’s kind of like going through phases, or at least that was for me. At first, I was really sad and scared when I was diagnosed. Then I got really angry once the disease got really bad and the effects went on for a long time. At the same time, I closed myself in a bubble of pain and I didn’t let anyone get into it, even my hubby. So, I can only imagine what it has been for him to be next to someone with all these negative emotions.
The biggest tip that I can give is that sometimes it’s better to listen to us, even our silences, than telling us “everything is going to be ok”. But at the same time don’t ever stop telling us that “everything is going to be ok”. It doesn’t make any sense, does it? That’s what living with a chronic condition is, it doesn’t make sense. Sometimes I need a shoulder to cry on, other times I need someone sitting with me for hours in A&E. I need someone that is ok with the fact that we can’t really make plans and when we do make them accept the fact that they might change. I need a very patient lover because a body in pain doesn’t think about pleasure, I need unconditional love when I can’t stop the tears. In return I can give you every good day I get in my life!
“I love you without knownig how or when or from where. I love you simply, without problems or pride.”