‘Behind the Scenes’ of Chronic Illness

Having a chronic illness is bad enough and has a whole bunch of regimes and elements which come with it. But there’s an awful lot going on behind the scenes, which lots of people are either unaware of or can’t see, particularly if the illness is invisible.

1.Money worries. Aside from not having a job, having a chronic illness brings with it a lot of hidden expenses. For example:

  • Hospital car parking and travel to and from hospitals. Which increases if I’m admitted to hospital.
  • Hospital TV is expensive when I’m admitted.
  • ‘Free’ social activities become hard to do, either because they’re physically unmanageable (walks in the park) or because I have to rely on services like toilets and food/drink which need paying for.
  • City centre parking/fuel because walking and public transport aren’t viable options
  • Having to eat according to specific diets brings the price of the food shop up
  • Being at home all day uses electricity and gas more than being out at work. The house also has to be at a set temperature rather than ‘just putting on a jumper’
  • Ringing premium numbers to get administrative tasks related to illness sorted
  • Paying for private treatment which isn’t available on the NHS
  • Having to buy specific toiletries or clothes to help manage symptoms

I used to be quite good at economising and there are some money saving things I would do if I were healthy. But, I have to admit that when I need to buy something, I tend to pay for the easiest thing I can find in the first shop because I don’t have the energy to be able to shop around like I used to. 

2. Isolation. Lots of ‘friends’ were sympathetic in the beginning but a lot have dwindled out. I’ve got my really good friends who continue to make the effort and I’m grateful for, but it’s still hours at a time by myself. People start to assume you get used to it. Or some people struggle with the concept of any debilitating illness which isn’t cancer and can’t understand why you’re not better yet.

3.Not being able to make plans. Both long term or short term. Life revolves around medical appointments and tests. It often feels like there’s no point in making long term plans because a test could wipe me out for a month, or a doctor might say I need to keep everything the same activity wise while I’m trialling something new. I don’t necessarily get told about these tests in advance, a lot are with a week or 2 weeks notice.  It’s also disappointing to make plans and then not to be able to do them.Which doesn’t help with the isolation.

4. Feeling like you’re to blame. I spend hours by myself. I occupy myself, but some of that time gets dedicated to ‘is there anything I could have done differently to…’ or ‘would people be better off if…’. There isn’t anything I could have done/can do differently. I know that, but my head still tries to take responsibility. 

5. Stress. Being long term sick is stressful. It has the obvious stresses for me and my husband like emergency admissions and ambulances, but it’s not like I have a condition where progress can be seen by doing a scan or a blood test- progress is hard to spot, might be a fluke and can also be rapidly reversed if I get admitted to hospital again. There’s also hidden stresses like:

  • Sometimes I need to be supervised and shouldn’t be left alone, but my husband has to work. I’ve got a couple of friends I ask to ‘sit’ with me if they’re free
  • My husband has to go away for work- I can’t look after myself for longer than a few hours at a time, so need someone to come help me
  • My husband has to do all of the household jobs because I can’t
  • I can’t get to the medical appointments I have by myself (there’s at least 2 a week) so someone has to take me
  • Keeping on top of medications and appointments can be a full time job, and I can’t do it myself
  • There’s also a lot of administrative tasks which need doing which are complicated!

6. Feelings. Doctors might help you with physical symptoms, but unless you have cancer or a ‘common’ illness, there’s not really anyone for you/your family to talk to for support or to talk about how you feel about it all with someone who ‘gets’ it. 

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