The burden of guilt

Definition of guilt: the fact of having committed a specified or implied offence or crime. A feeling of worry or unhappiness that you have because you have done something wrong, such as causing harm to another person:

I often ask people what is the worst thing about having lupus and get varied responses, one response that other people might not expect is ‘I feel guilty’. Even though we didn’t cause it and can’t control it, we can still sometimes feel guilty about having a chronic illness.

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Lupus changes your life, you can no longer be as spontaneous as you once were or plan well in advance, as you can never be sure how you will feel. Apart from this being hugely upsetting for you, it can also affect your friends and family and that’s where the guilt starts – you don’t want to let people down. It can be particularly frustrating if they knew you before you developed lupus and have now witnessed the changes in what you can no longer do.

If you look on the internet you will find that many, many people with a chronic illness feel guilty, yet when you think about it it’s pretty silly as you’re punishing yourself for something you have little control over. Chances are, the only person who feels like you’re a burden is you.

So what causes people to feel guilty?

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You feel you’re a physical burden. Your partner may now be your carer, they may work full time then have to be a carer when they get home, possibly even cleaning etc too, which makes you feel guilty. When they don’t complain that makes your guilt worse.

You may not have a partner, so your child may have to step into the role of caregiver, which definitely causes feelings of guilt as you want to look after them, not the other way round. Click here for “The Guilt I Feel Watching My Child Take Care Of Me”.

We may even have to call on our friends/relatives to help us with daily chores such as cleaning/gardening/shopping etc. Those who need this help can feel as if they’re putting their family and friends out and draining their energy as well as their precious time.

You feel you’re a financial burden. People often feel guilty for not working, not to mention the frustration of a lost career. It means there is less money available, there may also be extra costs if you have other therapies not covered by the NHS and financial worries are one of the major causes of stress.

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Cancelling plans/altering plans. This is a major concern for lupus patients and one that affects most of us at some time. It’s normal to make plans days, weeks, even months in advance, but when you have a chronic illness, you really don’t know how you are going to be feeling that day or even in an hour.

People with chronic diseases may often feel guilt ridden because they cannot always make plans with friends or family. If we do make plans, we may have to cancel anyway at the last minute because of health issues. Bot wanting to disappoint people or let them down makes us feel guilty.

Taking time out. People often feel guilty and even selfish when they take time out for themselves. Sometimes our bodies need to recharge and we have to rest. As you probably know ignoring warning signs that your body has had enough and you need to stop is at your peril. Yet when we need to rest/nap we feel we shouldn’t be ‘lazy’ and should be doing something more productive. The point is we are doing something, we’re taking care of ourselves.

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Children. I’d be pretty sure all parents feel guilt at some time. For example, long working hours may mean they don’t feel they spend enough time with their children, perhaps money is tight and they can’t buy their children the same things their friends have.

When you have a chronic illness, not being able to be as active with children as other people makes parents feel guilty and it may mean again that your partner has to do more. Mothers in particular feel they should be doing everything for their children. However, it may be that other family members can help. Does grandma like to bake, is there an uncle that likes to play football? If friends or family are already taking their children to participate in events such as sport/crafts etc could your children join them? At least you will feel like your children aren’t missing out.

Just because you can’t run round with them all the time, there are lots of things you can do with your children, reading to them, enjoying watching a film together, doing a jigsaw, crafts that can be done sitting down etc. They mostly just want to spend time with you.

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Letting down work colleagues. If you do work you’ll likely feel you’re letting down colleagues when you have to call in sick. You might also worry that colleagues think you’re being lazy, after all you look well so do they believe you’re really ill? Also if you have a great job that you love, but can’t do it to the best of your ability that may make you feel guilty.

How to cope with guilt

Let me say again, this is not your fault, you have a chronic illness that you didn’t cause and have little control over, you have nothing to feel guilty for and you need to remember this first and foremost.

My favourite phrase is that you can’t our from an empty glass, so you need to look after your health as you’ll be no good to anyone else if you don’t. Feeling guilty and getting stressed are not good for you.

Here’s a few things that might help a little:

  • Remind yourself of things you’re grateful for. I always say this, but keep a journal as a reminder of what you have to be grateful for. No matter what the circumstances, most people can find something to feel grateful for: our comfy beds, a roof over our heads, food on our plates, family/friends/pets, we often just need a little reminder.

  • Focus on what you can do. As I said above, maybe you can’t run round with your children or go dancing all night with your friends, but you can be there for them. You can listen to them, offer advice and support when they need it and when you feel abe, participate in things that won’t be too much for you.

  • Accept help. I’m not good at asking for help at all. If you’re like that too I totally understand, but we should accept help when it’s offered, so don’t dismiss assistance. Remember if the situation was reversed, you’d be likely to want to help someone else.

  • Have I done the best I can? Do you feel that, under the circumstances, you’ve done the best you can for your children/family/friends? When you were able, were you there for them? If you’ve done all you were able to do then you shouldn’t feel guilty at all.

Angie Davidson

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