Chronic Illness and Confidence: 4 Reasons Why You Lose It (& 2 Ways to Restore it)

by Katarina Zulak

Last week I had a Zoom meeting scheduled (my one and only Zoom meeting ever). Beginning several days beforehand, I felt anxious and apprehensive about the meeting. These feelings kept me up at night, and ruined moments of enjoyment during the day. I felt ridiculous, because, after all, this was only a simple chat with another human. No big deal, right? But my confidence has eroded since I developed fibromyalgia, and it makes me anxious about anything new.

I got caught up in the classic domino effect of feeling an upsetting emotion, judging yourself for having it, and then feeling crazy for having the emotion in the first place. I've sometimes wondered if I am the only person to have lost their sense of ability and skill after getting sick. So I tweeted out the question:

"Has anyone else found that their confidence has eroded after developing chronic illness? Why do you think that is?"

I was genuinely surprised and moved by the number of honest and real responses I received from other chronic warriors. Reading about the shared experiences of others is deeply validating and illuminating. I want to share the common themes that ran through the replies, interspersed with my own experiences, with the hope that they will resonate with you, too, and provide insights on this emotional impact of living with chronic illness.

Isolation

Pain and fatigue contracted my world to my apartment, neighbourhood cafe, and the occasional day trip car ride somewhere new. Chronic illness is very socially isolating and that contributes to a severe case of cabin fever when you are at home for a prolonged period of time. I lost the free feeling of spontaneity.

@JoOdamSmith

I certainly have, I think your world shrinks, you feel ostracised and a spectator of other peoples lives. I have gained a lot of weight with medications and have gone from a vibrant busy business owner to being at home with a full time carer. I am now fighting back!

Pacing (alternating activity and rest) feels so rigid. The loss of autonomy and imposition of limitations on ability due to fibromyalgia can contribute to an overall feeling of powerlessness. The fact that many people with chronic illness feel that their experiences are invalidated by stigma and disbelief can further their sense of isolation.

The up and down nature of illness means that some people disbelieve or misunderstand the truth about your condition. Needing to perform wellness and put on an "everything's ok" mask when socializing is isolating in a different way – like nobody can really see you and the truth of what you are experiencing.

@Amyv93 Yes yes yes. Partially due to social exclusion and misunderstandings when I literally can’t participate in some activities and get treated like a “party pooper”...or when I spend days in a flare-up feeling frustrated and discouraged and no one checks in on me. It’s hard not to wonder if

something is wrong with you (other than chronic illness) when peers don’t understand or support you. I used to be quite energetic and outgoing but I’m really not anymore.

Great Expectations

Self-esteem, how much you value yourself, is increased when you feel you are fulfilling your life roles (for example, as a mother, an employee, a volunteer, a citizen etc.) and positively living up to expectations, whether set by yourself or others. On the other hand, if you feel that you are failing to meet the expectations of your various roles in life, your sense of self-worth and self-esteem fall.

@tessabrunton Yes. I think confidence comes from thinking "I want to do this thing" and then finding you can do it. With ME/CFS so often it was "I want to do this thing" but then I couldn't do it, or I did it and was totally destroyed after. It's demoralizing and disempowering.

The primary feeling that most of us have when we can't meet our family obligations is guilt. If you used to be an active parent, but pain and fatigue limit what you can do with your kids now, it's common to feel like a "bad" mother or father.

For myself maybe because I feel the need to apologise all the time. Feel guilty for letting people down, as i can't be the person they expect me to be. #millionsmissing #meawarenesshour

I have found that it was difficult to go from independently supporting myself to being dependent, for everything from financial security to daily functioning.

Today, so much of our self-worth is derived from work, and being a "productive member of society." Believing that "hard work pays off" is a social value, something we are all taught growing up. I felt guilt and self-blame for having no tangible accomplishments at the end of each day. My sense of being a competent, confident woman crumbled. I dreaded introductions, because not having an answer to the question "what do you do for a living?" made me feel awkward and cringe-y, like the situation was somehow my fault. We all need to feel like we are contributing to something larger than ourselves, and not knowing how I could do that anymore made me wonder what my life would count for.

@charmedozarks My health affects my ability to hustle and get out of the day job. So my fibromyalgia very much affects my ability to feel "not a failure" because I used to take care of everything and be superwoman and now I live in pain every day.

Body Betrayal

My symptoms constantly fluctuate. One day my back could make activity impossible, the next I might have sudden G.I. problems, and on the day after that, insomnia could give me terrible brain fog. Some days, I am able to go out and have dinner with a friend, and on other days I have to cancel. I think that the breakdown in your body directly correlates to an erosion of confidence.

@MJayne_21 Definitely! The isolation for one. With cognitive impairment/brainfog, I find it difficult to have normal conversations so adds to the isolation. Also with not being able to exercise; I used to feel more confident when I was physically active.

The complete inability to plan a work or social life caused a perpetual feeling of uncertainty. I could never commit to something or work to any kind of timeline. The glacial pace of any

progress on projects that I attempted made me feel frustrated and thwarted. Nothing takes away your sense of having any control or agency in your life like endlessly living in limbo.

@AthleteInjured I think that never knowing how much you can trust your body and what might be possible today leaves a sense of uncertainty and self-doubt that eats at self-confidence & also makes you realise that you are not the person you used to be.

There can be a strong sense that your body has let you down, or even betrayed you. In their former lives, some people may have found that a sense of physical strength or attractiveness was a source of confidence for them. Alternatively, you might wonder - if you can't even trust your body, how can you trust in your own abilities, or how can you have confidence in yourself? Perhaps the answer comes from basing your sense of strength and confidence on something else, like @spingo_v says below - on self-awareness, self-care and self-advocacy.

@spingo_v Initially, yes. My confidence was based in how my body looked, performed, was up to tasks. Things plummeted! Growth came in when I realized I was the only one who could "save" me from the downward spiral. Confidence comes from my self-awareness, self-care, self-advocacy.

Loss of Former Life/Abilities

I had lost my purpose after leaving work due to medical disability. The goals that I had been working towards for years were now on ice. I was always someone whose identity was wrapped up in my work. I didn’t know who I was anymore.

As anyone who has had a significant diagnosis knows, you go through a period of grieving afterwards. The scope of losses due to chronic illness are broad and complex, and they can change during the course of an illness. The loss of health and ability can, in turn, cause losses in a person's career, social life, sexual function, body image, relationships, parenting ability and daily functioning, among other areas. Most fundamentally, these secondary losses caused by chronic illness can undermine self-identity and diminish self-esteem.

@Not_Just_Tired Yes, most definitely. I think we lose so much from our former lives that we struggle with where we “fit” with everything. Sometimes you feel like you have nothing new to say. Other times you struggle to get your words out to say anything at all that’s not a muddle!

Rebuilding Confidence

I believe that it is possible to rebuild confidence, on a new foundation. Much of it comes from re-calibrating expectations and re-framing how we define "accomplishment". For example, @tomtom2194 said that he can now "respect [myself] for my achievements and priorities no matter how small they may seem to others on the outside looking in. I spent too many years in depressive self loathing because i was not able to live up to the standards that had been ingrained in me. One psychologist who teaches Cognitive Behavioural Therapy for pain suggests keeping a list of everything you do each day for a week. You will likely be surprised to find you have done more than you thought you would, and that you've had successes you discounted too quickly (such as finishing physiotherapy strengthening exercises, emailing a loved one, or finishing a project). Start by deliberately setting out to achieve small things, reward yourself for accomplishing them, and then trying something a bit more ambitious.

As @spingo_v said, Growth came in when I realized I was the only one who could "save" me from the downward spiral. Confidence comes from my self-awareness, self-care, self-advocacy. Befriending yourself, and cultivating self-compassion, is a core part of developing more confidence. Self-compassion, put simply, means being a friend to yourself.

Researcher Kristin Neff has identified three elements of self-compassion– self-kindness, mindfulness and common humanity. Each element of self-compassion corresponds to an opposite element of negative emotional reactivity that increases suffering; namely self-judgment (the opposite of self-kindness), self-preoccupation (the opposite of mindfulness) and isolation (the opposite of common humanity). Basically, self-compassion interrupts that emotion> self-judgment > isolation spiral I described at the beginning of the article.

Self-kindness means to react with warmth and understanding to your own flaws and mistakes. Mindfulness in self-compassion involves acknowledging a thought, allowing it to be here, and then letting it go.When you remind yourself that your thoughts and feelings are shared by other people who experience similar situations, you connect your experiences with common humanity. Saying to yourself "I'm only human, just like everyone else," instead of feeling alone in the world with your misfortunes offers relief and comfort.

I hope that reading the insights from other people with chronic pain reminded you of your common humanity, and that you aren't alone if you experience negative emotional impacts from living with fibromyalgia. I've found that acknowledging the development of personal growth and character traits like strength, patience and resilience that arise from overcoming the challenges of chronic illness has been a solid foundation on which to re-construct a restored sense of self-confidence.