Living with Chronic Illness – How We Support Each Other

It’s no secret around here that TJ and I have (more than) our fair share of health troubles. Between TJ’s Small Fibre Neuropathy and my combination of Endometriosis, Hypermobility and IBS, life can be challenging to say the least.

It would be hard enough if just one of us were struggling, but when we’re both sick it makes it very difficult to support each other through our darker days. And yet, support each other we do… and we do it well!

Some of this comes from the fact that we both know exactly what it is like to feel exhausted the entire time, to have our energy zapped by constant pain (and other symptoms), and to feel that life is entirely unfair at times, regardless of whether this is just our perception or we really are facing discrimination due to our illness.

But the rest of it simply comes from the fact that we love and care about each other, leading us to find ways through the tough times even when it feels completely hopeless.

The past few weeks have been particularly troubling for us, as TJ has had to come off yet another medication due to side effects that are simply unacceptable long-term. He is doing much better now he is off the medication, but it does mean we’re in even more uncertain waters in regards to management of his pain and the extra health issues the medication caused.

And amid all of this, my health has taken a drastic turn for the worse, with more bad days than good (I’m talking 3 day migraines, crippling nausea, indescribable exhaustion). Simply surviving has become a challenge, and at times like this it is more important than ever that TJ and I come together to support each other, rather than falling prey to the misery that chronic illness can bring.

But what does this actually mean? What is it that we do that makes such a difference to how we survive these challenges and even find joy in the midst of them? I’ve been thinking about this a lot lately and here’s what I’ve realised…

We talk. A lot. It sounds simple, doesn’t it, but it really does make all the difference. It doesn’t matter what we talk about, the most mundane conversations can lead to some really interesting insights into what is going on inside the other’s mind. I’m very open and honest and blurt out what I’m thinking and how I’m feeling without any prompting most of the time, but TJ finds it more difficult to express these things. When we make time for each other in this way, it all becomes easier.

I’ll admit that I find it rather annoying when he hassles me to get ready for bed as he’s tired, only to begin telling me all sorts of things once the light is turned out and I’m about to drift off to sleep, but those talks we have before sleep are often some of the most telling! And that’s another way that we support each other – we give each other time. No matter how tired we may be, how inconvenient the timing is, or how many jobs need doing, we make that time for the other person when it’s needed.

Heightened emotions mean that outbursts can come at the most inopportune and unexpected moments, especially if we’ve been holding them in all day to get through everything else we needed to. Knowing that the other person offers safety in which we can let go and show how fragile we’re really feeling makes a massive difference. We both understand what it’s like to lose it, and so we give each other grace for those moments when we’re acting irrationally or taking it out on the other person, when they are the person who least deserves our wrath.

We make compromises. Big ones. When you’re chronically ill, you have to learn to know and accept your own limitations. It means that so many of the things you always thought you could have are no longer attainable without having a serious impact on your health and well-being. If you know anyone with a chronic illness, chances are you’ve heard of The Spoon Theory. TJ and I are well versed in this, and we both know that right now in our lives we are over extending ourselves massively simply to get by day to day… we have to work to make ends meet, we have to find the energy to put food on the table, and we need to provide a safe and happy environment for Little Man. By the end of all that we are usually beat… but we still want more.

This is where we find that it is important to know which compromises we can live with and which we can’t. We can live with a certain amount of pain, but we cannot push ourselves so far beyond our limits that we become unable to function. That financial security we crave is nowhere near as important as being well enough to enjoy what we do have. The higher paid job is not worth the added stress that impacts on our lives. And the larger family we’d have loved is not possible when we are both so ill. We get that. All of it. So we focus on what is most important to us – family, health, and happiness.

We work together to find new ways of surviving this crazy life of ours – we research our options and make changes accordingly. When I tell TJ that I want to try changing my diet to check for yet another food trigger, he does not question it but supports my decision. And when he tells me he wants to try exercising in a different way, I say “let’s do it”. When you’re chronically ill, you’ll try anything to find a better balance in your life and avoid triggers, even when you know that your latest idea may not work at all. Having someone support you in this rather than dismissing it from the start can make all the difference.

And finally, when all else fails, we care for each other. When, despite our best efforts, we are struck down with such severe symptoms that we simply cannot do more than sit in bed and cry, we allow this to happen. We allow each other to scream, shout, and cry about the injustice of it all, how we’re feeling utterly defeated, and that things will never, ever get any better. We’ve learnt, through the years, that sometimes there isn’t an answer, that sometimes we cannot fix it for the other person, and that despite the heartache that brings us both, we have to accept it.

And so we cry with them, allowing the grief to surface, safe in the knowledge that together we can get through it. None of this takes away the pain, but it does make it far easier to bear. It’s a dance that we have learnt together and will continue to follow and adjust throughout our lives. Living with chronic illness is tough, supporting someone with a chronic illness even tougher at times, but together you can get through it.

Tell me, how do you support your loved ones when ill? And what support do you find helpful when you’re sick?