First and most importantly, thank you for being here.
When I went into hospital, I was barely able to walk or speak. I didn’t know what was happening to me and I couldn’t communicate what was wrong.
The doctors were well meaning but they didn’t know what was wrong either.
I made it to and through hospital because my partner took care of me. She spoke for me when I couldn’t speak for myself.
When she unexpectedly came back into my room on the first night to bring me some food, after I had thought I wouldn’t see her until the next day, I was so happy to see her that I burst into tears.
You are seeing us at our most vulnerable, scared and confused. Being there with us at this time is deeply important and appreciated, even if we are not able to communicate that to you at the moment.
What’s happening to your loved one
Chronic fatigue is a real, physical condition. At the level of the mitochondria in our cells, our bodies are out of energy and are not able to produce the energy we need to function at our normal level. It’s a total system failure, caused and perpetuated by chronic stress.
Recovery needs to address both the physical side; regenerating our body, and the psychological side; understanding the thought and behaviour patterns that have got us here and working to change those patterns.
It’s hard to observe chronic fatigue, particularly when someone can appear back to their normal self for a few hours or days, then crash much later. We have delayed reactions which are confusing to us, let alone alone else. This is due to the nature of energy production in our cells.
It can help to think of chronic fatigue like a broken leg. It’s obvious that you should let it heal before walking on it. The same is true for us: we need to recover first, then rehabilitate.
My own recovery only began properly when I lowered my overall stress levels enough that I could get into a healing state for enough of the time to start to build up my energy reserves.
How to help them
It’s hard to explain fatigue to someone who hasn’t experienced it. “I’m tired, but it’s not a normal tired” is frustratingly vague, and I know that I wouldn’t have understood that explanation if I’d been on the receiving end.
We’d love to have a better explanation, but although the science is improving rapidly, even medical professionals don’t know what’s happening.
Your ongoing empathy is really appreciated. We know that it’s extremely hard for you as well and we care deeply that you are here supporting us.
Identify stress loads and help reduce them
The biggest thing you can do to support our recovery is to help identify stress loads that we are carrying, and ease these as much as possible.
That includes all non essential responsibilities: lunch with the in-laws, anxiety inducing work assignments, dealing with exhausting friends, cleaning the bathroom, planning holidays. All stressful activities are like walking on the broken leg: it’s the opposite of what we need, so cut them out.
Research and active interest
The next step is to continue your active interest in our recovery by researching practical steps forward. The volume of emerging and often contradictory information is overwhelming when you have limited energy. Helping digest this and point us in the right direction is a huge help.
One of the biggest challenges in recovering is that the steps we take in other circumstances don’t work for chronic fatigue, and are often counterproductive.
For example, exercise works great in the later stages of recovery, but is damaging in the early and mid stages. This is like exercising on the broken leg: it only works after, not before, the leg has healed.
This site digests some of the lessons I’ve learned on my own recovery journey, which I hope is of help. I’d also recommend finding some recovery stories, which help inspire and provide direction.
You need support as well
The most essential step to helping us, is to make sure that you have support too.
Seeing your loved one incapacitated is extraordinarily difficult. This is even more challenging when it seems like there is no progress, or things appear to get worse, over time, no matter what you do.
As our carer, you are under a significant emotional load and it’s essential that you receive support also, not just provide it.
We do not have the capacity to support you emotionally at the moment, even though we would like to. We also can’t take on the weight of your feelings about the situation, because we are too greatly impacted ourselves.
That’s why it’s essential that you have a support network that you can turn to regularly. This could be family, friends, therapy or a support group for carers..
Ideally this is someone who has some distance from your immediate situation. Close family and friends may also be emotionally involved and also need support, and it’s important to allow space for your own needs to be met.
It’s also important to keep in mind that you’re not to blame for your loved one being ill. Chronic fatigue is an overall system failure, it’s not caused by any one thing.
On behalf of everyone who finds themselves without a voice at this stage of their illness and recovery: thank you for being here with us. It means everything.
If you'd like to get in touch, send me an email