Health and Disability · Invisible illnesses · Personal

Top 5 tips for managing Guilt with Chronic Illness

Since I’ve been ill I’ve had overwhelming feelings of guilt about loads of things. Guilt about not doing things, letting people down, claiming benefits, asking for help, relying on people, relying on the NHS, not living up to expectations, not being able to join in with events, not being able to pay for things, complaining all the time, not being a good friend, daughter, sister, auntie, parent…

I am the Queen of guilt. I was brought up in a pretty Religious family, going to church every Sunday until I was about 13. I went to Catholic schools and university (it was the best one for what I wanted to do) I sang in the choir, played in the band and did readings at mass. Add a load of Catholic guilt to a Type A, people pleasing personality alongside an upbringing of “independence is the ideal way to live” and you have the combination that becomes me. I hate letting people down, I hate asking for help, I hate not being able to do everything for myself. I feel awful if I have to change plans because I’ve double booked myself. I get so annoyed if I’m late, it really stresses me out. I have to be perfect, I have to do well at everything that I attempt, I have to be a success and I have to do it by myself. I am of the opinion that people need to go out and make things happen for themselves. Life doesn’t come and bring amazing things to your door, you have to work for success and if you work hard, behave properly and follow the rules then you will get the good things. I was brought up to believe all of this and I only realised that it wasn’t exactly true after I finished university and I didn’t become a film director or music video creative super star. 

I was working in a department store earning next to nothing, in lots of debt and living with a boyfriend I should have gotten rid of a long time ago. This was not how my life was meant to go. I was meant to be moving to LA and being paid a fortune for my amazing ideas and directorial brilliance. Instead I got made redundant, moved back to live with my parents and my debt took me 9 years to pay back! I ended up in a cycle of getting to a management position in a company, getting ill and either taking time off sick and going back part time, or being so annoyed with the company that I just moved somewhere else. I did this 3 times. I never noticed a pattern until my mum pointed it out. (This year! Not long enough ago for me to have changed things earlier!) She told me that my body obviously couldn’t cope with the stress I ended up putting it through. I was working in industries where you don’t have set hours you just work when you have to. As a manager you have to fill in when people don’t come in as well as doing your own job. Working 60-80 hours a week was not unusual and no wonder I wore myself out. Another thing that I struggled with at work is that I have very strong morals and the minute I don’t agree with the ethics of the company or the person that I’m working for things get even worse for me. I’ve spent vast portions of my time stressing about employment law, bullying, grievances and disciplinaries (not all about me) and getting really upset about how people are being treated and sometimes fighting the system to try and make things better for either myself or others. 

I have so much guilt that I still occasionally have the recurring nightmare that I have failed my degree because I didn’t read one of the books for one of my classics courses. It was The Illiad and I still haven’t read it, but somehow I managed to pass the course and didn’t fail my degree, but I obviously have strong feelings of guilt about it as I felt like an utter fraud for attempting to sit an exam on a book I’d never read!

I’ve discovered that being ill has added to my huge levels of guilt and fanned the flames of my insecurities.

One of the main things that I’m feeling guilty about is asking people for help, and not being able to help others as much as I used to and want to. I hate asking for help. As well as being ridiculously independent, I also hate being a burden or feeling as if people have to treat me differently or make exceptions for me. I’m sure it all stems from my childhood and my parents, but at some point you have to take responsibility for yourself and your own problems (see, just another way in which I’m determined to be self reliant). I’ve always looked after myself and done things for myself. I had to get 2 buses to my school which was on the other side of town to where I lived from being 12 years old. If I asked for a lift anywhere I was told that I had a bus pass and legs and could get there myself, so I did. When I was about 14 I went to Germany by myself to stay with friends and refused to wear an “unaccompanied child” badge. I got there and back myself, changing planes in Amsterdam and loosing my luggage both ways! With this in mind imagine not being able to walk, not being able to cut my food up, not being able to go shopping, cook or do simple, everyday things like wash my hair, put the bins out or cook a meal. This all makes me feel like crap. 

I hate asking for help so I do it as little as possible. I get my food shopping delivered, I’ve got a cleaner and a neighbour puts out my bins (he offered, I didn’t ask, and when I told him I’d manage he told me not to be silly and he put out everyone else’s in the building so no problem doing mine as well. This made me feel a little better as I wasn’t the only one getting some help from him) I either pay for this help, or it doesn’t make me feel too bad. In the other instances I basically struggle through. I leave my hair until I’m feeling up to it, I order, buy and cook food I can eat without cutting up and tend to have drinks with straws in case I can’t manage to pick them up. If I do ask for help I feel really guilty. Occasssionally I have asked friends to cut up my food for me, or pour water from a jug because it’s too heavy for me and I feel utterly ridiculous so I make a joke out if it. I feel like a failure and a total waste of space. Looking at things from the other side I love helping people. I’ll often do little favours for friends and family, popping mail in the postbox, babysitting, buying something if I’m in the right shops before they are or going halves on a present if they don’t have the time to shop. I don’t mind this at all, in fact it makes me feel good. I feel like I’m being a good friend and I like helping out. If someone close to me said they were ill and needed some painkillers I’d have no problems going to the shops then dropping them off for them, but I won’t ask people to do the same for me. I can coach someone to understand that it’s not a problem, and actually most people feel the same way that I do, they like helping friends and family out, and we wouldn’t offer if it was actually a problem. I’m great at giving advice but rubbish at taking it myself. I am trying though. I’m better at doing it with certain people. Shop assistants are the easiest. I’m quite happy to ask for help as soon as I enter a shop now. I was in the metrocentre with my sister and nephew last week and caught the eye of an assistant who I asked to find what we were looking for, she took me to the sugar thermometers (Rachael is a domestic goddess and is going to make her own jam!) then was going to jump on a till and serve me herself so that I missed the queue. When she realised that it was t for me Rach had to join the back of the queue and wait to pay. We got out of the shop and Rachael was spitting, why do you get to push in the queue? Well, because I’m in a mobility scooter and people like to help. (She helps me a lot especially with food so shes allowed to be a bit annoyed when I get special treatment for no real reason). I’ll take it though. I like being able to scoot into a shop and get seen to straight away. It makes my life so much easier and I’m able to get in and out quicker. It does however mean that I can be talked into buying extra things by shop assistants (primer in Boots, actually really good) or signing up to store cards…I think I need a new purse for all of the loyalty cards I have and all the emails I get that I now have to be unsubscribe from! I don’t have any guilt about asking for help from shop assistants or waiters, basically anyone in the service industry or anyone that I am paying. I do still hate asking for help from friends and family. I know that this is stupid as they’re the ones who won’t be bothered about helping me, in fact lots of them want to help me and offer all the time. I really do appreciate this, but it just makes me feel so useless and pathetic getting help from people that I know for basic things that I should be able to do for myself.

Not being able to help others as much as I want to or used to makes me feel crappy as well. I hate not being able to see people as often as I used to. I hate that I only have 3-4 useful hours in most days so I have to spread people out so thinly that I’m only seeing them every couple of months. This makes me sad and so I tend to over book myself, do too much and then make myself ill by doing it! I keep redoing my pacing plan and cutting things out but I’m still rubbish at it. Plus things come up and have to be done by a certain time and I have no choice but to either cancel on people or overdo it. Obviously I overdo it and obviously that makes me feel bad, but at least I’m not feeling guilty for cancelling on people.

Not being productive is my second biggest guilty nightmare. I’ve always worked and supported myself and I was so proud of myself when I paid off all of my debt and was able to afford to live by myself. I’ve never had loads of money as I’ve always had jobs that don’t pay brilliantly, but being financially independent is hugely important to me. Having to take a step down at work was dreadful, having to cut down my hours because I couldn’t manage anymore was horrific. Then having to leave work altogether and claim benefits has been a nightmare from hell. When I left work in April I was determined that I’d get my business to a place where I could support myself before my redundancy money ran out so I wouldn’t have to claim benefits, so I threw myself into work. I designed a plan and scheduled meetings to promote my business. I basically went full speed into an obvious burn out and have had to keep having amazingly fun conversations with myself where Stick Girl Vic says to Old Victoria “you need to slow down, that’s what benefits are for to help when you’re struggling, you can’t do this much you’re making yourself ill” and Old Victoria replies with “I have to be able to support myself, I’m doing something that I love so it’s not really work, course I can do it, I’m not going to be pathetic and give in to my stupid health conditions!” My internal conversations are exhausting and Old Victoria often wins as she’s not as sensible as Stick Girl Vic and she doesn’t prioritise her health as much. Silly girl! 

I’ve written about my experiences with the benefits system and I hope that they help others to find their way through the minefield that I’ve found so confusing even though I knew a little bit about it. I hope that by sharing my journey other people find theirs a bit easier (see what I mean about wanting to help others?) But I wasn’t really prepared for the results of my benefits assessments. I haven’t posted about them yet as I feel really guilty about them. Here goes…I am currently claiming PIP (personal Independance payment) and have been for a couple of years. I used to get the lower rate of care and nothing for mobility and when I was reassessed recently I got awarded the higher rate of care and mobility. I’ve read through all of the questions, the criteria and how the points are awarded and I know that this is what I should be getting. This is what I am “entitled to” (I don’t like that terminology), but I am entitled to it and I shouldn’t have to justify it or explain how I am spending the money, but I feel as if I have to. I feel as if I’ll be judged if I don’t act sick enough, or disabled enough, or am spending the money on the “right” things then I’ll be judged. I have no idea who by, and the only people who’s judgment I am bothered about is that of my friends and family, and I haven’t even told all of them yet. Probably because I don’t want to go into justifying mode and feel guilty about getting money just for being sick. My ESA award arrived in the post a couple of days ago and the only person that I’ve told is my mum and she doesn’t have a clue how things all work, but she’s pleased for me, even though her response to my text was…”I don’t understand, hope that’s good” I’ve been put into the support group, which again, if you read the criteria and points for the groups is where I should be and I feel crippling guilty about it. In case you don’t know ESA is basically unemployment benefit for people on long term sick, you get a basic amount for approximately 13 weeks until you get an assesment. Mine was almost 2 months ago and I wrote about it and how a horrid experience was made easier by the lovely people that I dealt with at the centre. You’re awarded points on your ability to work. This is different to the PIP assesment as its a different benefit and you can get PIP if you’re working or not. ESA is only for unemployed sick people. Now technically I am employed. I have my own business and I do some work most days. This is allowed, but I feel as if I’m a fraud and cheating the system. I’m not at all, but I feel like it, and there is the desire to explain and justify why I am getting this money every fortnight. 

When I’m speaking to friends in similar positions I always ask them if what they’re thinking and feeling is real. Has someone actually told you that these are the facts? I speak to my friends with compassion, I give them advice from a place of love and support. I don’t do this with myself. I go to worst case scenario that everyone I care about is going to judge me and think that I’m taking money that I’m not entitled to and I don’t deserve. This money is for properly sick people, not me. So I told a good friend how I was feeling. She’s got her own health problems and understands where I’m coming from and always gives honest advice (if you don’t have any of this type of friend then you need to find a few, having people who’ll tell you the truth no matter how hard are essential to life! I’ve got 3 and I value them so much. Sometime I don’t have the emotional energy to deal with the hard truth, in that case I ask someone who’ll cover it in a bit of sparkle and happiness, but if you can handle the actual facts and need to learn and grow from any mistakes you’ve made then ask one of these amazing people. They’ll call a spade a spade then give you a hug and help you make it all better.) This friend told me that I’d told her how crap I was feeling about being awarded the higher rates for PIP and then in our proceeding conversation I was telling her about the last week and how hard it had been. She basically laughed in my face and said that I’d just explained why I was awarded the higher rates. She told me that although I stick my makeup on along with a smile, do my hair and make an effort to look like a “normal” person, my life was actually pretty shit. We both had a good laugh about this and she made me feel better. It didn’t erase my guilt, but I did feel better. I’ve got another friend who is very right wing and he is adamant that I am the type person that benefits were designed for, an actual sick person! Not like all the other scroungers that are out there…he always makes me laugh! So I’m being brave and telling you all that I’m sorry I’m having to claim benefits at the minute. As soon as everyone starts buying more Aloe Vera products and T-shirts from me then I’ll be able to stop claiming and manage by myself again. 

Speed is another thing I feel guilty about. Not walking speed, I walk like a crippled tortoise most days, I’m talking about getting things done. I used to reply to messages, emails and phone calls straight away. I could chat for hours on the phone or have multiple conversations via messages in one night. Now I struggle to get back to people within a week! When I get home after my “good” 3-4 hours in the day I’m completely wiped out. Answering a message, replying to an email or following up a phone call just isn’t possible. I either wouldn’t make sense as my brain has died or I just don’t have the energy to construct a sentence and have a conversation. I definitely can’t answer anything complicated, and filling out forms and meeting deadlines is now a huge problem for me. I have to do a little bit everyday and prioritise things, so if I have friends to get back to they’ll come after customers, and if I have paperwork that is health or money related that that comes first and I get nothing else done. I hate that my brain doesn’t work properly any more. A lot of my self esteem and self worth comes from seeing myself as intelligent (insert your own jokes here). I love reading and learning and having discussions with people who have opposing views to mine. The fact that I struggle to do this now makes me so frustrated. I think that this is the worst part of my illnesses. I obviously hate being in pain and exhausted all the time, but I could cope with that easier if I wasn’t so mentally challenged by it all. I forget things all the time, I walk into things and drop items repeatedly. Even when my brain is working and I’m thinking of fab ideas for my blog, books I want to read or things I want to talk about, I can’t do it because my body won’t work well enough to manage to do these things. I feel like I’m letting people down by not replying to them, by turning off my phone at about 6pm because I just can’t manage to interact with people after then. I wake up to missed calls and messages, get back to people, and then can’t manage to do what I’ve said I’ll do in a reasonable amount of time so I’m letting them down again. I want to be able to tick things off my to do list quicker. I want to feel as if I’m a good friend because I keep in touch with people. I have to be successful in business so I’ve got to get better at this. So I put more pressure on myself and more stress and this ultimately makes the problem worse! I spoke to a photographer the other day who said that she puts her response times onto her website and answerphone message and is very clear about the limits that she puts on her business hours to make sure that it doesn’t interfere with her life and personal time. I need to do this, I think it’s fantastic! She said that some people think she’s a bitch because she’s so hardcore about it, I just think she’s had a brilliant idea and is making sure that the people around her understand. I also spoke to a motivational speaker a couple of months ago who after I’d explained what I was doing, where I wanted my business to be and the timescale I’d set for myself basically told me to stop pushing so hard. He said that if I took most people 6 months to earn the amount of money that I wanted then it could take me 18 months to 2 years. He explained that if I continue to push myself to breaking point then I’ll continue to have ups and downs when what I should be doing is being consistent with little bits and taking longer to reach my goals. I totally agreed with him and have been changing my timescales and business model recently to fit in better with a long term plan.

So my top tips for getting rid of guilt (and remember that I am not currently succeeding with this, but I am trying and getting better at it)

1- If you can’t ask for help then at least take it when it’s offered. People actually do want to help and you need to think, if this friend asked you the same thing would you do it? Would you think less of them for asking? Would you be happy to help? Most of the time the answer to these questions is yes, so we just need to get over ourselves and get some help sometimes.

2- Stop worrying about what you can’t do any more. Unless you’re a horrible person you’ve probably already done loads of other people and will continue to do so. So stop being so hard on yourself. Do the things that you can, accept the thank you’s and then go back to bed and rest.

3- Benefits are there for a reason. They are the safety net that society provides for people who are struggling. They are not a lifestyle choice and if you can get off them and back to work, then do it, and if you can’t then you can’t. Tough! You’ll just have to live with it and do what you can when you can. Plus some benefits are available when you’re in work so anyone can have them, you just have to fit the criteria, so nothing to feel guilty about at all!

4- Be like the tortoise who took his journey slow and steady, not like the hare who sped off and ended up loosing the race. I am a tortoise and my life needs to move slowly. Hare’s are just exhausting!

5- Find some fab friends who’ll give you a truth slap when you need one. Taking care of yourself is the most important thing that you can do and no amount of feeling guilty is going to help you, in fact it’ll probably make you feel worse!

Does any of this ring true with you? Do you have any other tips for dealing with guilt? 

Get in touch and let me know.

Vic xx

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