Chronic ilness, the mind & the self

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So, it seems pretty obvious that chronic illness will affect your mental health right? Yes, but the impact it can have on your mental health, I have found to be more varied than I had ever considered. For example – you have the worry of diagnoses, the tests, the waiting in hospitals, missing work, having to actually speak to Doctors and specialists and then relaying this information to the people in your life. This is all a no brainer. As is the actual stress of the physical illness – the aches, pains, sleep disturbance, anything that’s seeping out of anywhere it shouldn’t be at a time when it shouldn’t be and the unrelenting fatigue etc. But there is definitely more to it than that. Another thing that has challenged me is how it makes you question who you are and what your role is in life. Before being ill I was very sociable and outgoing – always up for a party or event of some kind. I was also a person that worked hard and was efficient – efficiency was one of my things. Since I’ve become a ‘grown up’ it has become a way that I measure my value, how much work I can churn out at a high standard. And then along came bowel disease followed by possible MS in the space of 12 months and it has made things a little trickier. Yes, I still work hard – but not to the standard I would like and I have less energy for a social life. But I have only begun to accept this in the last couple of weeks – 14 months since I started getting ill. And by acceptance I don’t mean be OK with it. This is one aspect of chronic illness that I don’t see people write about enough. The challenge of adapting to a new self.

Another thing is how you talk to people about it and how you manage their response. People don’t often ask me how I am or how the tests are going in social situations because they don’t seem to want to bring down the mood and talk about how crap it is to be ill all the time. That’s fair enough. People seem to be very uncomfortable with talking about stuff like this, I’ve found they generally have no idea what to say. They can’t say ‘hope you get better soon’ or ‘insert positive message here’ because you won’t get better soon and if you do it’s likely you will go back into being ill again – at some point. So I find that people don’t tend to ask me much at all – and this has obvious consequences. First comes the bitter ‘nobody asked me how I am’ thought then the guilty ‘oh but they don’t know what to say to me so it’s not their fault’ or ‘nobody wants to be bored by me talking about illness all the time’ – half the time I think they are just scared I’m going to cry.

So I guess what I’m trying to say in this blog is that chronic illness is a funny old business that doesn’t just attack your mental health from one angle. So if you do find you are unfortunate enough to end up in that position please prepare yourself for that. My advice would be –

Do your research – read about it, speak to people who have it, don’t sit at home alone worrying about stuff get out there and talk to people that know what you are going through. Laugh about the dark comedy that surrounds living with these conditions.

Try not to get frustrated – people won’t behave how you want them to. Humans react to situations in a myriad of ways and you can’t expect everyone to be exactly as you need them to be all the time.

People who think they know more about your illness than you do – this WILL happen and it will only sap away your energy to get stressed out.

Practice mindfulness – It is incredibly helpful and there are so many ways to do it that there will be something for everyone. It will help you to stop worrying about the future and ruminating on the past and just to be present in the moment and get in touch with your body (which I know can be difficult when our bodies seem to have failed us).

Take time to relax – I am terrible for this but I am starting to learn that I need time out just to lay down and recharge or my fatigue gets way out of control. It may mean cutting back on social things or strenuous hobbies for a while but may mean that you get back to being able to do them quicker.

Feeling sad is perfectly normal – grieving for a life, role in life or whatever that you used to have and that will now be very different is ok. In fact EVERYTHING YOU ARE FEELING IS VALID and it’s all OK.

Lean on those people that want to support you – I have struggled with feelings of guilt putting so much onto my boyfriend. Allowing him to look after me and do things for me is very difficult for me as I have always been independent and done things for myself. The reason that people live in families, friendship groups etc. is because we need others to survive and be happy. One of the things in Maslow’s hierarchy of needs is to feel loved – allow whoever is in your life to show that love through how they support you. If they really do care about you it will make them happy to be there for you.

Now I’m no expert of course. But I have been both mentally ill and more recently physically ill for most of my life and the things above have taken a long time for me to accept – but here they are and I hope they help you in some way.

Oh and lastly, if someone offers you a CURE ALL supplement or diet then they are severely misguided and talking rubbish. No one thing is a cure all for everyone.

No, not even Aloe Vera. 🙂

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