Dedicated to all the wonderful friends and family in the world helping those with HNPP.
Last week was particularly frustrating. After two weeks of eating TV dinners, my friends came over and cooked me my first proper meal in a while. And following the warm, fuzzy feelings of love and kindness, guilt began to set in. So why do we feel guilty about our attempts to cope with HNPP and asking for help? This may not be the first post about guilt, however, it’s an important factor to think about within relationships.
Feeling guilty comes from the notion that you’re doing something bad or wrong when you don’t meet your self expectations or when you don’t meet the expectations of others. But in being sick and in being physically limited by your illness, you’re not doing anything bad or wrong. When it comes to an illness, there is a difference between doing something and being something.
Kathy Charmaz, Professor of Sociology at Sonoma State University in California, analysed the consequences of the loss of self in the 1983 article A Fundamental Form of Suffering in the Chronically Ill. In it she says that because suffering loss of self develops out of daily life, social psychological conditions contribute to that suffering.
She states: “When ill persons attempt to return to the normal world and fail, they usually feel profound disappointment and grief for their lost self-images. As discrediting events recur, the chronically ill begin to see themselves as permanent failures and as burdens to others.”
The powerlessness of not being to ‘perform’, and therefore becoming dependent on others can be a major source of worry for some who socially identify on being independent. My friends may see me hovering around the kitchen as they cook for a reason.
Professor Charmaz adds: “Since becoming a burden is rooted in physical dependency and immobilization, ill persons usually recognize that their illnesses have become their major source of social identity […] Becoming a burden affirms and intensifies immobility and stands in symbolic contrast to the way these persons wish to conceive of themselves.”
Becoming ‘a burden’ means that a person no longer fulfils the obligations implicit in past relationships. Even though what constituted ‘fulfilling obligations’ may only be realised when someone is no longer able to do it, guilt and shame about burdening others usually follows. And perhaps the worst part of this sense is the feeling of uselessness to yourself and others even though those roles and obligations may never have explicitly been expressed.
What becomes obvious is that there is a heightened sense of self-concern about the person we see ourselves becoming and about valued self-images from the past which we have lost after being diagnosed with a chronic illness.
“Guilt was something that forced me to overcompensate in every aspect of my life. I was overindulging and swimming in my own guilty conscience. I thought I had a right to feel guilty because I wasn’t able to participate in physical activities with my children or because I was no longer cooking meals from scratch or that our home wasn’t impeccably clean. I spent so much time overreacting that I didn’t see the bigger picture, where my children didn’t care about any of these things – at least not in the way I did.”
Lana Barhum – Rheumatoid Connect
In the study, Professor Charmaz alludes to the fact that as a result of negatively comparing our current level of functioning to past levels and previous personal performance standards, individuals “suffer tremendous amounts of self-blame and guilt”.
Consequently, she goes on to add: “they may devote much energy to apologizing to others for their felt inadequacies. Indeed, they may apologize for their very existences because they too share the assumption that in order to be fully human, one must be able to function fully.” This may in turn result in those suffering from chronic illnesses to try and overcompensate.
How does this manifest?
If you do not have a form of chronic illness, you may be perplexed right now. There are many different sources of this guilt. These may include:
- Physical burden – chronic pain comes in a variety of forms, but in the end it can be debilitating. Those of us who need the help of caretakers can feel as if we are putting our family and friends out and draining their energy.
- Financial burden – whether you are a young person and have parents that pay for all or some of your medical expenses, or you have a spouse and/or a family, the cost of having a chronic illness can be enormous. Many of us seek alternative therapies to help us heal, which are often not covered by insurance. This is exacerbated if the person with chronic illness is unable to work to cover these costs. Professor Charmaz adds: “When fortunate enough to work, ill persons frequently feel they have to restrict all other activities in order to manage their jobs. But when forced to leave work, they usually just live marginally and leave their prior social worlds entirely. Under these conditions, they suffer a loss of friends and often drastically alter their lifestyles.” This adds to the sense of guilt of not partaking in activities.
- Cancelling plans – those of us on the chronic illness end feel bad for letting our family or friends down, disrupting the plans, and not being able to socialise and catch-up. Often the pain or fatigue associated with chronic illness is not noticeable and therefore the recipients do not understand or believe it.
- Unable to go to work – this can be particularly difficult as there are feelings of guilt over not being able to turn up, fear of possible reprisals, as well as self-reproach of letting your boss or colleagues down.
How to stave off feelings of guilt
- Learning to let go – accepting your circumstances is vital to letting go of guilt. Guilt makes being ill much more difficult and causes emotional stress that is damaging to our bodies and spirits. When you are feeling stronger, you can take on the world without guilt or pity and with motivation but in the meantime, give yourself the same kindness and sympathy you would give to others. Being ill is not an identity – the only one who gets to define who you really are, with all your baggage, flaws and perfect imperfections, is you.
- Focus on getting better – during flare-ups, your responsibilities may feel like mountains to climb. However, illnesses are here for the long haul and while you may feel good for a day, or week or even a month, it only takes one flare to send you back to bed or having to miss work. In this way, focusing on getting well takes your concentration off the guilt. Overcompensating can end up setting you back.
- Talk to your friends and family – if you feel embarrassed, take them aside and tell them why you’re feeling guilty. Unloading your thoughts and feelings can be so freeing, and it may help you and your friends understand the grief that can be associated with the loss of self. If you have to cancel on anyone, feel free to them exactly why.
- Keep a gratitude journal – you can write in this daily or however often you feel like. It can be a recount of your day, your list health or life goals, and more. Seeing the great things, small or big in your life, reminds you of the abundance in your life despite a chronic illness.
- Avoid monitoring everyone else – I would actually recommend not to look at other people’s social media accounts too much because it can exacerbate feelings of guilt for not being able to perform or take part in the same things. It can also make you feel lousy when you’re trying to avoid thinking about your ‘past’ self.
- Contribute in a way that works for you – you may not be able to go clubbing or traipsing around art galleries, you can still offer advice and support, share laughs, and enjoy activities that work for you. Maybe you can’t work full time and feel guilty that you aren’t helping your spouse. Yet, if you are the one cooking healthy meals, doing housework, driving the kids and helping with homework, those are some vital ways to support a family.
When any of the above scenarios are in play, guilt is often self-inflicted, which is hard enough. But when family or friends add to the guilt, it makes those feelings come alive and place a much heavier burden on the chronically-ill person. For our own health it’s important to thwart these feelings and thoughts. And when in doubt, be open and honest with your friends and family and let them know how you feel.