Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

'Our fears reveal what we care most about.'


Elephant love

Beyond the physical pain of a chronic illness can come emotional pain and feelings of guilt as well. I was diagnosed at 18 with my first Chronic illness, I hid most of my pain as I was worried as to how this would affect my family and friend relationships. A year and two chronic illness's later, I've accepted that my health has to come first. I have learnt to let go of the guilt that comes with chronic illness, and have developed my own coping strategies. Below I share my (and many others who helped me) wisdom, aswell as a touching piece someone shared with me the other day, on why those with a chronic illness may feel guilt, and how to cope.

Many people with a form of chronic illness experience guilt, which I think is uncalled for, right ..? It’s your health! So to feel guilty about doing what you need to do to keep yourself healthy… seems silly, in theory. Yet despite how silly it seems, I’ve felt intense guilt about my chronic illnesses more times than I can count, and I know many others who have, too. Guilt seems to be almost as prevalent in chronic and autoimmune illnesses as the pain itself. Guilt, it seems, is one of the worst symptoms of a chronic illness.

Why Do People With A Chronic Illness Feel Guilt?

If you don’t suffer from a chronic illness, you may be confused as to why I’m suggesting we’d feel guilty for being ill. So here’s some insight into the brain of a chronic illness sufferer and a few of the narratives that go through our heads on a daily basis.

- Feeling as if you are a physical burden to the people who are taking care of you. Chronic pain comes in a variety of forms, but it can be debilitating. Those who need the help of carers can feel like they're asking too much of their family and friends, and even draining their energy.

- Feeling like a financial burden. Whether you’re young with parents who can cover your bills (like me), or older with a spouse and a family, the cost of a chronic illness can be enormous. Oftentimes, those with a chronic illness seek alternative treatments, which are not covered by insurance, or if they're unable to work, they feel like a financial burden for being unable to contribute to their household income.

- Feeling guilty for cancelling plans. It’s normal to make plans, days, weeks, even months in advance, but if you have a chronic illness, it’s never certain how you’ll feel from day to day. When we have to cancel plans, we feel bad about letting our family or friends down, disrupting the plans and not being able to socialise. Often the pain or fatigue associated with chronic illnesses is not noticeable, which makes it hard for others to understand that it’s a real illness. In addition to cancelling plans, some of us may be hesitant to commit to plans in advance at all. It’s easy to feel like you’re letting your friends down or you’re simply 'no fun'. Calling in sick to work. It’s bad enough to let your friends down, but it feels terrible to let your boss or co-workers down as well. Not being able to go into work can also cause fear, worry, anxiety and stress, which are never going to help us heal in the long run.

- Guilt over how we care for ourselves. This chronic illness guilt can be more pronounced for those of us that have taken charge of our health, versus those with the mindset that our disease is totally uncontrollable. When we’re not feeling well, it can feel like we aren’t doing enough, or doing the right things. In reality, we may be doing all we can in the reign of our control.

When any of these scenarios are playing out, chronic illness guilt is often self-inflicted, which is a hard pill to swallow. But when family or friends add to our feelings of self-blame (knowingly or unknowingly), it makes those feelings come alive and places a much heavier burden on the one with the illness. I’m lucky that I have only had supportive friends and family, but I’ve talked to many people who experience just the opposite. They struggle with loved ones who question why they aren’t working, why they can’t keep plans or why they have no energy… because they can’t see the source of our pain. It’s critical that those of us with chronic illnesses have people in our lives who try to understand how we feel.

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I have a chronic illness and I feel guilty about it. How should I cope?

How does one with a chronic illness get past the guilt? It’s not easy. I won’t lie. I still feel guilt occasionally. However, the longer I live with my illness, the less I worry about what people think of me and my decisions. Here’s my tips for keeping your focus and your health front and center.

- Remember that you are the most important person in your life and all aspects of your health come first, whether it’s mental, physical or emotional well-being. So, if you need to cancel plans with a friend, keep in mind that you need to do this for yourself and do not feel guilty.

- Realise that you can contribute to your loved ones’ lives. Maybe you can’t go out clubbing with your friends, but you can offer them 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 support your family. Yet, if you are the one cooking healthy meals, doing housework, driving the kids and helping with homework, those are valid and vital ways to support your family.

- Remember that your friends and family are around you simply because they want to be, and let that ease some of the guilt that comes with your chronic illness. Before you start feeling bad for letting them down, or worrying that they don’t believe that you’re really sick, remember that everyone in your life cares about you and that you are loved!

Below is what someone told me (when I was looking for help on the guilt feelings above) how they have turned their guilt around which truly inspired me:

'I had to come to the realisation that I have done nothing wrong. I was created this way, and it's the journey I am supposed to take. I also had to come to the realisation that there is absolutely nothing wring with us, it is the perception of others that is flawed. We are chronically ill, differently abled, and there is nothing wrong with that. If there was something wrong with it, 'In sickness and in health' would not have been added to wedding vows.

Humans are frailer than most people think. We have limits to what we can handle sometimes, and must fight a little harder sometimes, or even a lot harder, or some days just give in and rest it out. Those are all ok. The only reason we feel guilt is because someone else is not accepting of who we are in the time we are in.

Our loved ones and friends should be accepting, understanding, compassionate and loving towards our condition/s. If they are not, they are not true friends. They do not have unconditional love for us, and is that truly a big loss ..? I have lost friends over this, friends I don't miss at all. I have lost family, and truthfully I don't miss them either. If they want to be accepting of me the way I am, I am right here. Other than that, I don't have time for that drama.

I have started focusing on the good things that I have right in front of me, not my failures.'

Living with a chronic illness can cause guilt, which may hurt just as much as the physical or other emotional pain. I hope that my coping strategies will help those who may be struggling with a chronic condition, as well as those who have a friend or family member with a chronic illness. We can never go wrong in offering a little extra love and understanding, both for ourselves or those we care about.

Until next Monday,

Bethany S.

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