I feel a lot of grief for what my partner's life should have been like.

[Antimony]

After another GP appointment where the doctor told my partner "everyone gets tired", my partner and I are just feeling very dispirited. My partner didn't have the energy to blow out a dandelion the other day. He also isn't totally on board with the idea of chronic fatigue either. The thought that this could be permanent terrifies him.

I feel so sad for him. He's extremely good at his job, but hasn't been able to work full-time for years. He's very ambitious, but whenever it seems like he's getting somewhere, another fatigue episode flattens him. He's had to pass up so many opportunities. So many friends have drifted away. This isn't the life he wanted, and it's not the life I want for him either. I wish I could have this disease instead of him.

Fatigue makes him anxious. He has heavy brain fog and only has the energy to sit up. He looks around on the internet for any explanation. We've given up caffeine, sugar, late nights, gluten, vegetarianism, and screens, and I think there's a bottle of every single kind of vitamin and mineral in the cupboard.

I'm so sad his life is so small now, but I'm also frustrated that he doesn't see it as a pattern. He'd prefer to think that a vitamin deficiency, stress, a vaccine, a bump on the head, all just happened to give him months of fatigue. It's been 6 years, and even when he's felt healthy he hasn't been able to walk more than 30 minutes. I don't want to insist he has a chronic condition, because I respect his perspective (I might be wrong, he could just be extremely unlucky) and also the idea that he's permanently disabled would really crush him.

I think I found a supportive GP on the other side of town. A friend of a friend recommended them. I'd like to come to the appointment and talk about the 6 years of fatigue episodes my partner's experienced. I'm pretty sure he won't mention any of that and only talk about what's been happening the last month. I want to help but I don't know how to help.

Ok thanks for reading my rant! Not sure what my question was but it was nice to type it out!

[river]

@antimony I've had ME/CFS for 4 years and I've found that most people - doctors, friends, family - don't want to accept that I have a permanent disability, and would much rather attribute it to something I'm doing wrong in my life.

This is just my perspective and I think it might be an unpopular one, but once I accepted this wasn't going away, and started focussing on what I could still do within my limitations and how to adapt things to make them easier on my body, everything got a lot easier mentally.

It's both physically and mentally exhausting constantly looking for answers and beating yourself up for not getting better - at some point, once your doctor has ruled out all other treatable causes, you have to stop fighting it and start living with it. It's not easy to get to that point though, and your partner will have to get there in his own time.

Meanwhile I think the best thing you can do to help is to reassure him that he is still valuable, worthy and loved, whether he has a permanent disability or not. That there is still so much joy we can experience with this illness, but there is also a lot of loss and it's ok to grieve.

I hope the doctor you found can help provide some answers or if not, at least the support you both need. Good luck

[A Former User]

Hi @antimony. It is so hard seeing the people we love living in pain and missing out on the big and small things in life. It's harder still when we know we can't just fix it. It sounds like you're doing all the things you can do to support him, which is so great, but I know it never feels enough. I'd love to encourage you to link into some of Emerge Australia resources for patients and carers, especially in preparation for the appointment with the new GP. We've got some great new resources being added to our website. Please call on 1800 865 321 or get in touch online here. We're thinking of you, and all the Carers in our community

[Dot]

@antimony There is certainly so much grief for the life your partner would be living without his illness. (Still grieving mine.)

Reading through your post, the biggest issue seems to be how to make the most of this appointment with the new GP. It is sensible to go to the new GP with a clear list and timeline of symptoms and the way life has changed. To get a useful diagnosis, the doctor needs the whole picture.

It is your partner's journey, but you are an important part of his life and, next to him, presumably the most affected by his illness.

I think my suggestion would be that you write out that timeline and list of symptoms as you see them. Especially write out clear, concrete examples.
I would include his ambitions and abilities, and how they have been affected by his chronic fatigue.
I would include symptoms from the CFS list that are relevant, eg if he has unrefreshing sleep and post exertion malaise.

You can avoid saying chronic illness and life long disability, just document the reality that you have seen. Be clear about the 6 years and the patterns you see.

Then, respecting that it is your partner's issue, I would give the list to him and ask him to consider if he thinks it represents the reality of his health issues, if it would be a good list to take to the doctor. And I would abide by his response (I hope).

A proper diagnosis is not life crushing, but a chance to make the most of that little life, and stop it from getting any smaller. Good management might even make life quite a bit bigger again.

You will sense, reading this, if it is something that may help. Ignore otherwise!

But best wishes