Ten things I wish I knew when I first became chronically ill

When you first get ill, it’s scary. You’re used to going to the doctor and them quickly being able to tell you what’s wrong. But with most (eventually) chronic illness, this is not the case, you go through a long period of anxiety where no-one, not even the doctor, can tell you exactly what’s wrong with you.

I’ve put together this list, as if to myself when I was in that limbo land of undiagnosis. I hope that it may help others in the same situation:

1. Don’t google your symptoms to try and figure out what’s wrong with you (at first)
I can see the veteran chronic illness sufferers gasping here, because, eventually, Google will become a very useful tool for you. But please stay with me here…

The Internet is a fantastic place full of information. It is very useful when dealing with chronic illness to use it to research your condition. However, putting your symptoms into Google and seeing what comes up is only going to make you more anxious. You will convince yourself you have serious illnesses and you will no doubt find yourself reading worst-case scenarios of those illnesses.

I know it is hard to resist. Especially if your doctor has basically told you to go away and see if it gets better (see no.3). But I made myself about ten times more anxious by doing this and it got me no-where. If your doctor isn’t being helpful/ isn’t taking you seriously, try seeing a different GP (although it’s best to stick to one once you’ve found a decent one as it’s often like starting afresh every time). But otherwise keep going back to them and reminding them that you’re still there and still ill and they need to find you an answer or refer you to someone who can.

However, I’m all for becoming your own expert later. But you need to have got past that initial anxiety first. By all means, Google the Conditions your doctor mentions as possibilities (but if you’re still very anxious stick to official medical sites). And if you’ve gone through all the medical system and come back with no answers, yes do look for them yourself (also try a different GP/ a second specialist opinion). Join communities of patients that can give you answers and support you (see no.6 ) once you are diagnosed or have a strong suspicion you have a certain illness. Once you know what you’re dealing with, you can use the Internet to follow the developments in research, if your GP/specialist isn’t doing much to help you, look into treatments and make suggestions to them. Google is great, but not when you first get ill. Use it at your peril.

2. Be kind to yourself
Adjusting to being ill is hard. You lose your self-identity (see my blog chronic illness and the loss of self). And your inner voice, which may or may not usually provide useful criticism, will become your worst enemy.

Picture this scenario. You’re trying to put some dinner together for yourself. But every moment of it is a struggle. You drop the spoon repeatedly, so your mind calls you a “stupid idiot”, you mentally struggle to read the recipe, so your mind says “come on you should be able to do this, you imbecile. A child could do this.” You drop half the dinner on the floor, and as you cry over it, your mind continues with berating you, calling you names, making you feel worthless.

How much worse has your inner voice made this scenario? Now, this is something I learnt in CBT, which I know is controversial as a treatment for ME, but let’s be clear, this helped me cope with being ill, it didn’t make me better (but coping with it did improve my quality of life). You can retrain that inner voice. Now I target this at people who are depressed because they are ill, I am sure if you suffer from depression as a condition as of itself this is probably way too over simplified and a lot harder to implement.

How you retrain it is fairly simple, but takes some practice. You have to consciously make an effort to become aware of it. If your inner voice is being cruel, stop and think: would I say this to a friend? Most likely no. Then you need to adjust what you just told yourself, and tell yourself something you would say to a friend. Like: you are doing a really good job under really hard circumstances, you’ve had a really bad day but you made yourself dinner and you should be proud.

To start with you will still be insulting yourself, but talking to yourself like a friend once you catch yourself, does make things feel easier to cope with. Over time, the negative voice will fade and the positive one will take centre stage. Mr negative will pop up, especially on bad days, and that’s ok, don’t tell yourself off for getting it wrong, just bring in your compassionate voice as soon as you notice it.

No doubt in the above scenario you will still be upset about dropping the dinner on the floor, but, another part of this, which I think is harder because to do it you have to have a greater level of acceptance that you are ill, is to plan things to make them easier on you. You are ill, you don’t have to do everything to the same level and the same way everyone else does. Make (or get someone else to make) emergencies batches of food for the freezer (just cook a bit extra) so if it’s a bad day, you don’t have to cook. Or forget about the idea of washing every day and get yourself a shower seat for when you do.

And another part of this, is to focus on what you can do rather than what you can’t. And remember that life is not black and white or all or nothing. You might not be able to clean the whole house anymore. But you may be able to do something smaller that helps with the house cleaning.

3. Doctors don’t know everything
I have found over the course of this illness that doctors can generally be split into two categories: those who tell you if they don’t know the answer, and those who tell you there’s nothing wrong (or you are depressed) if they can’t find the answer.

But the thing I didn’t know before getting ill was what both categories have in common, doctors don’t have all the answers. Even the specialists can’t always figure out what’s wrong and have to pass you to another specialty before hopefully someone tells you “this is what’s wrong with you”.

Your GP will become a very important ally both in your diagnosis and, if it turns out to be something chronic, for your day-to-day management and treatment. The important thing is to find yourself GP who will A) properly investigate your symptoms b) refer you to the relevant specialist if they don’t know and c) listen respectfully to your concerns and suggestions. It is likely, if your illness does become chronic, that you will become more of an expert in your disease than your GP through your own research. You won’t have the thorough medical knowledge but you will have spent a lot more time, reading about, investigating and living with your health problem than your GP could even dream of. A good GP (and a good patient indeed) will respect each other’s knowledge and work as a team to move forward.

4. It is normal to doubt yourself
I know this is very true for my illness ME/CFS and am sure it is true of many others. Sometimes you will just think to yourself “maybe I’m not really ill, maybe I can just push through and I’ll feel better.” Then you try this, and by midday your struggling to lift up your head.

But the limbo land that is undiagnosis makes this so much worse. Tests keep coming back negative, you may have come across the odd doctor who tells you it’s all in your head (and also fail to realise that if that was true, you would still need help with that), you might get sent from specialist to specialist who each scratch their heads and say “well there’s nothing wrong with you neurologically” or whatever it is they specialise in.

This will get to you, this will make you question yourself. But you’re not alone and this doesn’t mean you aren’t ill. It means you want answers and you want your life back.

5. If you can’t keep up with your old life, don’t force yourself to do so
Carrying on from the last point, trying to pretend you are not ill and carrying on as normal at its best will make you over-stressed and exacerbate your symptoms, at worst will make your illness worse. This is what I did. And I know it’s so hard to listen when people warn you. If a doctor had told me “you’re doing too much, you’re going to have a crash and make yourself worse,” I might have listened. If my future self came back in time and warned me to reduce my working hours, I reckon I would have listened too. But my doctors were pushing me to do more and my future self obviously hasn’t discovered time travel.

I don’t know how true this is of conditions other than ME/CFS, but with my illness if you push yourself beyond your limits too often and for too long it is highly likely you will have a huge crash and be unable to do the same level of activity for a long time if at all.

But if you take that sacrifice now, be compassionate to yourself and look at how you can make it easier so that you can cope, your future outlook will be much brighter. Obviously I’m mostly talking about my own experience here, but I reckon the headline here works as a general rule for most illnesses: “if you can’t keep up with your old life, don’t force yourself to do so.”

6. Join support groups
I am part of a great group on Facebook that has saved my sanity more than once. They are there when I want to know if my weird new symptom is something to worry about, when I’m out of ideas on how to calm down my knee pain at night, or when everything gets too much and I just need someone to listen who understands.

Finding the right Facebook group for you will be a bit hit and miss. Join a couple and you’ll find which one suits you best pretty quickly. And if you’re up to getting out once in a while, see if you can find any local support groups to meet up with (or ask in your Facebook group if anyone lives locally).

Chronic illnesses can be extremely isolating. Please don’t suffer alone, reach out to those who know what you are going through. If you aren’t diagnosed yet, you can still join groups around your suspected illnesses or a more general one aimed at chronic illnesses (you may need to know that “spoonie”) is a common slang term for someone with a chronic illness and will be in the title of many of these groups.

7. Make an effort with your friends
When you get ill you disappear from your old life and one of the most horrible realisations is that most people won’t keep in touch. But, here’s a bit of advice from someone who was a sister to someone with a chronic illness before I had my own chronic illness. It’s (usually) not because they don’t care, it’s because they don’t know what to do.

And often, they’ll be waiting for you to make the first move. Think about it. If you were sick with a virus for two weeks you wouldn’t expect anyone to come visit you unless you are serious besties. But then that drags on, and you’ve been ill for months now and they don’t know if you want visitors, they don’t know what to say to you because they’ve never been ill for that long, they don’t want to say the wrong thing and hurt you. And, this is harsh but true, the less you are physically in someone’s life, the less they think of you.

But you don’t have to leave it like that. Give them a chance. Invite them over for a cup of tea. Ring them up if you’re not like me and get terribly anxious on the phone. Text them telling them you miss them and would like to see them soon. Or text them about something normal like: “OMG did you watch Game of Thrones last night?!” And start a conversation. Most people will take you up on that. Some won’t. Try not to waste your energy worrying about those people.

And also don’t expect them just to understand. I didn’t fully understand my brother’s illness when I was in the same house as him. But try to explain it to them. I’ve found the friends now who seem to just “get it” without too much explanation are the ones I have at some point stopped and explained it to. And if you aren’t great at using your own words, borrow someone else’s. Find blogs and articles that explain what your life is like. There’s a great blog called the spoon theory (this is where the term spoonies comes from) that explains how you have to live and plan your day with limited energy supplies. Or write a letter or a blog so you can explain it yourself but take time to consider how you say it.

8. Those around you need to adjust too
You’ve been struck down by this horrible illness and it’s really f**king hard. But please remember that for those who really love you it’s also a really tough time. They are watching you suffer and can’t do anything to stop it, they, like you, are grieving your old life together and while their life may not be as restricted as yours, it probably has become more restricted than it used to be.

I’m not saying “just put up with anything”. The same rules apply as a normal relationship, just that you are both/all deserving of compassion in this situation and you both/all need to give it to each other and try to see things from each other’s perspectives.

It’s very easy when you get ill to get very annoyed when those around us don’t just “get it”. But as I said before, they won’t necessarily get it unless you explain it to them. Snapping at them and then brooding about it won’t help. Sit down and talk to them. Try not to be too aggressive about it, explain it in terms of your needs and experience rather than attacking them. “I feel..” Is a good way to start the sentence.

And don’t assume that you know what they are thinking (this goes for both of you). In the early days of my illness there was a lot of tension because my partner assumed I wouldn’t be ok with him going out every now and then without me. I assumed it was obvious it would be fine. Once we actually talked about it there was a huge relief on both sides.

And don’t forget that they will sometimes need comforting too.

9. Depression is a normal reaction to becoming chronically ill
I won’t write much for this except to reassure you: It is normal to feel depressed because you’re chronically ill, it doesn’t mean you’re ill because you’re depressed. Get help if you need it. Talk to those around you. Join a support group. There’s no shame in needing emotional support.

10. It is possible to be happy whilst chronically ill
This doesn’t mean everything is going to magically get easier. But you don’t have to just “exist”. And this may take a while, you’ve got a lot of grieving to do first.

But the key is to do a) something that gives you a sense of achievement everyday: some craft work (knitting, art, adult colouring books, writing) ; and b) do something that gives you a sense of pleasure every day: stopping to watch your fave funny TV show with a cup of tea, listening to a few of your favourite songs, having a good giggle with a friend on the phone.

Make sure you make the activity small enough that you can cope with it daily (obviously you can change it up a bit every day too). This might take a bit of trial and error. Remember a few mins daily of something will get you further than one big burst that means you can’t do it again for a week and are put off doing it again. And don’t try and merge the two activities into one. A lot of achievement activities will give us pleasure too, but I assure you, it’s a different kind of pleasure. Pleasure for the sake of pleasure is what we’re going for here. And now I’ve said the word pleasure too many times and it’s lost all meaning!

These are all the things I wish I knew when I first got ill. I’m sure I’ve missed a few things out so feel free to comment with your own ideas. What advice would you give to someone who has just got ill?

Lots of love from,

Laura’s Pen