8 things I wish I knew when I first got ill

So I’m just in bed resting and feeling depressed after yet another fruitless doctors appointment, and I was thinking of all the things I wish I knew at the start of this. Then I thought, why don’t I write them down so that other people WILL know them, and just maybe it might help someone. So in no particular order here are my top tips for the recently diagnosed chronic illness warrior.

1.) Don’t dive into anything right away.

Make sure you give yourself time and space to consider which path is right for you, because there will be many, and you can’t do them all at once. I know all you want is to get better as fast as possible, but if you dive straight in without considering the consequences you could end up doing more harm than good. That’s what I did.

2.) Let yourself grieve for your old life.

As hard as this is to hear, your life is never going to be the same again. It’s a devastating loss, especially if you’re young, and it’s incredible hard to accept that you can’t do all the things you want. I don’t think it’s possible to get over it completely, of course you’re still going to have days when all you feel are anger and sadness, but you need to let out those feelings instead of holding onto them or pushing them down. If you refuse to deal with how you feel, it’ll only get worse and end up impacting your physical health as well.

Getting ill doesn’t mean your life is over, it’s just the start of a different one.

3.) Get a therapist.

I know a lot of people are reluctant to do this, and some see as a sign of weakness (mainly due to the connotations between therapy and mental illness and the stigma that that comes with), but that’s a load of crap. There’s no shame in admitting you’re having trouble dealing with everything, because who gets a chronic illness, has their life turned upside down, and is perfectly fine? Nobody.

It takes time find the right one, I went through 3 before I found the women I’m seeing now, so don’t worry about “shopping around” to find the right fit. Look for someone who has experience is the sort of thing you’re going through.

I know therapy can be expensive, but many therapists have negotiable fees for people who are on lower income, so don’t worry about asking about that either.

Personally I think it’s worth every penny. I don’t think I could cope if I didn’t have someone to talk to about everything I’m feeling and help me make sense of it.

4.) Become your own doctor.

Our global healthcare system has a very poor understanding of chronic illness as a whole. My main illness (myalgic encephalomyelitis) doesn’t even have a diagnostic test for goodness sake!

GP’s will vary between “incredible understanding but useless” to “disbelief that you actually are ill”. I am very lucky that I have a very understanding GP, but there’s really not much she can do, so you, the patient, have to take over.

I go nearly every month armed with a list of questions, tests that might show something new, and tests to rule out things she hasn’t thought of yet. Whenever you get put on a new medication, double and triple check for any interactions with the tablets you’re already taking. It may sound obsessive, but it is necessary. You’d be surprised how often these things are missed.

5.) There will be people who don’t understand and make hurtful comments.

This was probably the hardest one to learn. I’ve always been incredible open about my illnesses, how they affect me, and how I struggle day to day. I thought by doing this I could side step the stigma and ignorance that comes with the territory of having chronic and/or mental illnesses. Oh how wrong I was…

If I had a pound for every time I’d heard; “Come on, you’re just not trying hard enough”, “everyone gets tired sometimes”, or “oh I know how you feel, I feel so hungover today” (I could go on)…I’d have enough money to find myself a cure!

There’s no way to get around the fact that some people just don’t get it, and never will. The easiest thing to do is to just cut them out of your life. I know this may seem drastic, but honestly it’s so much easier in the long run. You need every scrap of energy you can, you don’t have enough to waste it on trying to get people to understand.

One of my favourite quotes is by Dita Von Teese; “you can be the ripest, juiciest peach in the world, and there will still be people who don’t like peaches.”

Although this quote doesn’t quite fit my situation, I can still relate to it and repeat it to myself a lot.

6.) Get used to asking for help.

Realising you can’t do things that you used to be able to because you’re ill is so hard, in fact there aren’t words describe how crushing it is to lose your independence.  The realisation that at 22 I’m just as dependent on my parents as I was when I was a child is utterly disempowering. Not being able to walk to the corner shop, or even to walk to the kitchen to get myself breakfast… Well…there is no way to get used to it, but the sooner you swallow your pride and ask for help, the sooner you’ll get better because you won’t be pushing yourself to do things that are beyond you at that moment.

There will be a day when you can walk to the corner shop again…and you will be so happy that you’ve achieved it!

7.) Your body is going to change.

This is an important one. At the beginning of my illness I got put on a medication that caused me to gain a lot of weight. It happened so fast that I would look in the mirror and not recognise the person who I saw. It made me very depressed, and it’s something that I still struggle with now sometimes.

Everyone will experience different changes, whether it’s losing weight or having bad skin. As so far as is possible try not to let it affect how you are as person, because whatever it is that changes your body, it won’t change how kind you are, how generous you or how much you love your friends and family. Those are things that matter and the things that people remember, hold on to them.

8.) Some days you will feel like you can’t go on, but you can!

This is where I find Mindfullness really helpful. Day to day, I don’t think about the future, I don’t even think about next week, or tomorrow. I just think about today, this hour, this minute. What do I feel like doing now? I could maybe read for a few minutes, that would be nice. Or I could watch some TV or listen to a podcast. There’s no point in thinking about anything else because I don’t know how I’m going to feel tomorrow or the next day.

I’m not going sugar-coat it and say that having a chronic illness is easy, because I’d be lying, it’s not. There are days when it all feels like too much and there’s no point in anything anymore, but please know that everyone has days like that. It’s completely normal to feel depressed sometimes.  All you have to do is put one foot in front of the other.  The human spirit is uniquely indomitable, you can survive this!

I hope you liked what I’ve written, if any other chronic illness warriors have any suggestions as to things I’ve missed out then leave a comment 🙂

Until next time, Rhosyn.