Hello loves,

How have you been?

Today I want to talk about six things that those of us living with chronic illnesses wish that “healthy” people understood.

Firstly, I can accept that I can explain these, and that some “healthy” people are just never going to get it. Secondly, I can accept that until I was bang in the thick of it I didn’t really get it either.

Looking good doesn’t always mean feeling good

Most of us have likely said on more than one occasion that we are fine, when we are not. So hopefully this will be the easiest one to relate to.

For a long time after diagnosis I would make sure that I always had great hair and had spent time doing makeup to go to work so that I wouldn’t draw attention to myself in case I looked unwell. I didn’t, and still don’t, want to be talked about, I didn’t want it to affect how people thought of me, if I was suddenly incapable of doing my job, if it would affect my performance reviews. I also got fed up with having to explain. Or worse – being on the receiving end of the iconic line “but you don’t look sick” How I hate that.

Nowadays I draw attention to myself when I do put makeup on for work, it’s become such a rare occurrence. Without makeup I find that my skin is less agitated, and I don’t have to spend time and energy taking it off at night. Or putting it on in the morning to be fair. I’ve saved myself at least half an hour.

Just because we try to be positive, it doesn’t mean we are feeling better

My gran always said you don’t know what you don’t know about someone else’s life. Similarly to my first point, we are able to smile and laugh even when we’re not feeling great. Sometimes it’s a mask, sometimes something was just funny. It doesn’t mean we’re suddenly feeling great and can skip down the road. We also don’t like to complain, and sometimes being open about what we’re going through, every single day, it starts to sound like we’re complaining. Also, I don’t always want to have to think about my health, or talk about it. Sometimes I just want the distraction.

We don’t get days off – this is with us for life.

Our illness is always there. Some days might be easier than others, but the symptoms don’t disappear. Something always hurts. Something always feels bruised. I may be able to go for a run, my symptoms come with me. Recovery from a run takes longer. Training for an event takes longer. Most runners worry about a DNF – did not finish, for me it’s more likely to be DNS – did not start!

There’s so much that also goes on that most people don’t see. The hospital visits, the medication, the hiding unwell in the bathroom, the nights spent awake, the list goes on.

Managing our illness needs to come first.

I have had people in my life who would get annoyed with me because I had made plans, usually on a better day, and then the day would arrive and I wouldn’t be able to go. They would expect me to manage it anyway. I won’t go into the kinds of things they would say to me, but looking back it is more and more obvious that so much was about them. They could have taken someone else. They could have gone alone. I couldn’t even get down the stairs. There was never any understanding that I was also feeling disappointed about not being able to go, and sad and angry that again my illness was affecting me. Yet I was the selfish one.

If I needed to get to work in London on the Monday, I could only have plans for one part of one day of the weekend. Long gone are the days of being out and about all weekend without considerable chunks of rest time. If I wanted to decorate a room at home, I used to be able to get up early, decorate through til nighttime, and do the same the next day. Now it’s decorate for a few hours, finish early for dinner, and hopefully be ok for a few more hours the next day.

The symptom “fatigue” is not the same as tiredness

When healthy people are feeling tired a couple of nights sleeping well can resolve it. Fatigue, on the other hand, no amount of sleep is fixing that. The more fatigue I have, the more pain and spasms I have, so the quality of my sleep goes down, and the vicious circle continues.

I have been lucky enough to be able to get myself into the space where if I can go for a run, even a slow jog, it creates the good kind of fatigue in my muscles, and they’re so busy repairing themselves it’s like they don’t have time to have the bad kind of pain. My sleep improves, and then I can start to feel better. Also getting out in daylight every morning taking Oscar for a walk helps immensely. I get a good dose of daylight, which our brains need to set our circadian rhythms, I spend time in nature, and Oscar is a great distraction as I need to pay attention to what he is doing.

Being home all day isn’t the dream you think it is

Being home during lockdown, for me, was the dream. No commute, able to eat my meals at a decent time. Feeling I actually had time to eat breakfast and let it settle. Breakfast and the chaos of a commute do not work well together.

However, being stuck at home when you’re in pain and feeling unwell, that’s an entirely different game. There’s no spending the day pottering around the house. Taking a shower uses a lot more energy than you might realise. Forget about using a hairdryer. Even wearing my glasses is hard work. At the height of my illness I was quite fortunate in a way that I was single and only had myself and my cat to look after.

I’ve had people tell me “I wish I could lay around at home all day and do nothing”. You know what comes with doing nothing? Housework builds. My orthostatic hypotension meant I couldn’t bend to load the dishwasher, and I couldn’t stand for long, so crockery etc would gather up on the side. Vacuuming and dusting didn’t get done. All the tasks that people do easily build up, and then when you do have moments of feeling better, it’s an overwhelming task to try and catch up and one that is likely to drain you so much you’re back to square one.

There’s more than these 6, these are just the ones I’ve thought of for today. 

 I’ve always said that one step towards feeling better about your illness is acceptance, and the same is to be said about other people’s opinions. Accept that some people will never get it, and those people are probably just not your people. Don’t let their negative attitude drain even more of your precious energy by feeling agitated, angry, or trying to change their mind.

Thanks for listening. If you liked what you heard please subscribe and share the podcast, so that we can get this out to others who are also wanting to take back the life a chronic illness stole from them.

And remember, you are worth it, and you get to choose. Have a lovely day.