Someone wrote that their doctor said this to them. And it resonated with me. When you’re chronically sick with multiple issues/symptoms, you get told to do a lot by various HCPs to help yourself, which is great. But it’s bloody knackering and you start to feel like you need to be constantly doing things to help yourself either because you’ve guilted yourself into it or someone who is healthy has- you’d be surprised how often people tell me what I ‘should’ be doing and how I ‘should’ be looking after myself. Which is ridiculous because the average person doesn’t look after their health 100% of the time, so why should someone with a chronic illness? People still smoke, drink alcohol, eat junk food and ignore their doctors all the time. So why do people with chronic illness feel compelled to always be ‘perfect’?
I think the feelings are further compounded when the illness is permanent and you’re not going to get better- it’s sometimes hard to see why exactly you’re bullying yourself every day to do things which aren’t going to cure anything. There’s no target except ‘keep going’. Here are some things I do every day, or at least most days, as part of my ‘therapy’ to help my illnesses, as per recommendations by people treating me:
– journaling/morning pages
– meditation and mindfulness
– medication 4 times a day
– eating at specific times
– following a specific diet
– getting enough rest
– keeping a baseline activity level
– avoiding triggers or ‘stressors’
– attending appointments
– keeping a record of meds, food eaten and symptoms to see if any patterns emerge
– keeping to and recording my fluid restriction
– recording and testing my BP, temperature and blood glucose results, if relevant
Add in the things which happen most months but not daily but that have a significant impact on my life:
– preparing for tests/scans e.g. Withholding meds, fasting
– going for tests and to clinics
– tapering from stress dose to baseline after ‘normal’ illness
– keeping track of meds and when repeats need to be put in (they don’t occur at the same time and there’s about 15 of them)
– medication changes and any side effects
– liaising between hospital depts, my GP and pharmacy or asking someone to do it on my behalf
– making appointments for follow ups and continuous treatment
I’m not making this into a competition by listing my ‘therapies’, I’m using the list as an example for those who don’t have a chronic illness to illustrate my point. I’m not hunting for either ‘poor you’ or ‘you want to try having…’ comments. I personally find doing all my therapies all day every day exhausting at times, because, while beneficial, it makes me feel guilty if I take a day off from my diet and eat a dessert when out with friends or don’t do my physio because I’m tired and sore from having been out. Spontaneous activity is nigh on impossible which can make things a bit boring. If you’re a close friend, I will probably justify what I’m eating to you in particular, or ask if I need to worry about what I’m eating. Which sounds pathetic, but it’s because I’ve been conditioned to do everything I possibly can to help myself so I can’t be accused of ‘bringing my problems on myself’.
So you’re not just spending physical time on completing the necessary actions for your illness, it’s also the emotional energy spent on it which adds up. Combine that with the feelings you already have about what having a chronic illness has meant change-wise in your life and it can all get a bit much. I find it especially wearing because my illness isn’t well known, so it means having to explain it over and over to people, including medics, which adds a whole other layer and a lot of people telling me they don’t know what to do with me and that I know more than them. Trouble is, when your options are ‘do all of the above’ or ‘die’, you don’t have any option but to keep going even though all you want to do some days is dig your heels in and refuse to do any of it.
Burnout is starting to be a recognised thing and mechanisms are being put in place to support patients. When someone has a trauma or a diagnosis of a progressive or terminal illness, there is at least recognition that mental health needs to be looked after just as much as the physical symptoms and illness. But when you have something chronic, long term and permanent, there isn’t really anyone looking out for your mental health or helping you come to terms with it. It kind of feels like I’ve been left to my own devices and I’ve been bounced from different doctors. It’s only recently that a couple of them have started asking how I actually feel about it all and trying to address it.
I want to do all I can to help myself, for sure. My friends and my husband regularly tell me it’s ok to have a life and forget about what I ‘should’ be doing for a bit but I never fully believe them, there’s always a little part of me that still feels ridiculously guilty. So reading a random doctor saying ‘therapy is good but make sure you have a life too’ made me feel a bit relieved. I felt a little bit more that ‘it’s ok to break some of the rules some of the time’. I can’t explain why, but whoever that doctor is and whatever patient they said it to, they made my life a little bit easier by writing about it. Now I just need to remind myself of it!