I don’t talk about this a lot but I feel it, all the time: the guilt that comes with my chronic illness.

The sensible part of my brain tells me that I shouldn’t feel guilty; I can’t help having multiple sclerosis and I am doing everything that I can to lessen the impact that the diagnosis has on my life.  But I still feel it, particularly in regards to my dependence on others.  Like when my parents take me to my hospital appointments or when I can’t go to a mother-daughter cheerleading day with child number 2 due to my mobility problems.  I know that my MS doesn’t only inconvenience me, but also the important people in my life.  I don’t want to make loved ones’ lives harder but my diagnosis means that I can’t help it.

When you’re chronically ill, it is easy to feel like you’re in your own little ‘bubble’; you are the one who has the painful symptoms throughout the day and you are the one who has to consider whether an outing that will floor you for days makes it worth going to.  But the lifestyle changes that chronic illness can induce naturally impact on those around you – socially, financially and emotionally.

It can be difficult to shift the ‘feeling guilty’ mindset. It is so emotive, but the word ‘burden’ springs to mind.  Do I feel like a burden sometimes? To be honest, yes, though some days I feel a little better than others. I think that the key for me is focusing on something other than the guilt:

5 Ways to Help

Positive Contributions

I find that considering the positive contributions that I do make to friends and family helps; I might have to have a lot of help with chores outside the home but in the home, I am super-organiser mum and wife who keeps on top of the bills, the housework and the kids’ extracurricular activities.  Ok I might need to sit down between jobs but they still get done – usually. My chronic illness also does not stop me from being a good hugger or listener; I am always there when someone needs me.

Appreciate

I recently read that a useful strategy for learning to appreciate yourself is to write down three things at the end of the day that you did well – and to look back on this at the end of the week.  This might be as simple as kissing your partner goodbye before they go to work.  By focusing on what you are doing right, it can help reduce negative thoughts. I am really trying to use journaling and mindfulness techniques to help me appreciate the ‘little things’ that I do successfully every day.

Remember that others are entitled to their own feelings

Just as I feel guilty for depending so much on others, others are allowed to feel frustrated that I have to depend on them so much. Chronic illness consumes the whole family reminding myself of that when my husband is frustrated at the need to go out to get milk yet again (it is an almost daily occurrence in our house) is important.

Recognise that others want to help

Sounds simple but one thing I have truly realised recently is that I can’t help having to rely on others. So, really, what is the use in feeling guilty? Plus, it is important to recognise that others want to help. My parents came home early from their holiday when I was recently in the hospital and I felt so, so guilty for shortening their long-awaited trip.  But my parents said it was a no-brainer; they wanted to be here to support me.  And I know that I would feel exactly the same with my own family.

Take care of yourself

Your own needs and views are not less valid because you are sick. I try and view my need for self-care – whether that is spending some time doing yoga, sleeping or writing a blog post – as a necessity for my mental health. Anything that makes me feel more in control places me in a better position to fend off any unwelcome feelings of guilt.

***

I thought that this was an important blog post for me to write; recognising my own feelings of guilt is the first step to trying to combat it. Ultimately, know that it is normal to feel this way – just another symptom of having a chronic illness, I guess! By focusing on the points above, we can hopefully help to lessen the impact.  Do you do anything, in particular, to ward off the guilty feelings?

Till next time

 

 

 

 

 

9 Comments

  1. You’re right, this was a very important post to write. I find I struggle big time with feeling guilty, though I don’t know why it seems to nag at me so incessantly. But I find guilt over feeling like I should be doing things when I’m not, guilt for not working, guilt for not using my degree and having a career, guilt that I lost my job and now feel like a waste of space, guilt a lot of the time does seem to be around losing my job, not being in work, struggling financially, that kind of thing. And of course like you focused on, guilt over the impact on others. You’ve made some excellent points, and I particularly like the idea of focusing on other contributions you make to others while acknowledging others want to help. Guilt is something I think a lot of us in the ‘chronic illness’ community will sadly be all too familiar with. Very well written, Jen!
    Caz xxxx

    1. Thanks Caz,

      Yes, I feel guilty about all the things that you mention too. It is really hard, isn’t it? I think the fact that we feel guilty just goes to show the kind of driven people we are (to succeed) and how caring we are (not wanting to bother others), though I know that doesn’t make it better. The work thing is really getting to me too, trying to figure out how I can get back to my career in a way that will be accepting of my MS. It is hard when building etc are not very disabled friendly and my body doesn’t want to play ball. But it is important for my self-esteem, I think. Thank you for commenting lovely xx

  2. Thank you for this. Guilt and shame over not working is killing me. I don’t any family to turn to, so for me it’s a literally a matter of lie or death figuring out how I can make a living with the health issues I face. Homelessness is inevitable if I don’t figure something out. But how I can figure anything out, much less act on it, when I am beyond exhausted from the condition I have and the side effects from medications? I’m drawing the line at homelessness though. If things don’t improve and I end up living on the streets, I will more than likely exit this life early. I don’t have kids or a partner, so I won’t be leaving much behind. The best case scenario would be to find a treatment that allows me to be productive again, but it’s not looking good at the moment.

    1. Oh Bill, I am so sorry that things are so tough for you. I totally understand the guilt, but please know you have nothing to be ashamed about! I don’t know where you are based, but would it be helpful to speak to an MS society helpline for support? Jenny

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