I think one of the most difficult parts of being chronically ill has been the effect it’s had on my self-esteem. That probably sounds very strange, given that chronic illness comes with a whole slew of physical, mental and emotional challenges that might seem to take precedence over something that seems less immediately problematic like how I value myself. Don’t get me wrong, the physical symptoms are awful and have caused me too many breakdowns to count at this point. I also have many worries about what my future may be like, how quickly my diseases may progress, how my family and I will handle all my medical expenses and so on. But outside of these more obvious worries, I’ve realized that many of my other mental or emotional struggles since becoming sick seem to be related to my lowered self-esteem.
Before explaining why I feel that self-esteem issues are often the basis for many of the mental and emotional struggles that result from chronic illness, I should explain why chronic illness affects one’s self-esteem so greatly. I feel that we often take our bodies for granted until we get sick. When healthy, we fail to recognize and acknowledge just how much our physical ability contributes to our sense of self. Think about it this way: when describing ourselves to others, we frequently begin by describing what we do – as a job, for a hobby – it’s all about action. Think about how many times someone has asked you, “So what do you do?”
So when you find your body failing you and you lose the physical capacity to do the things that make you you, your sense of who you are is shaken to its core. We really don’t realize how much we rely on our health until it’s gone. Chronic illness truly forces you into a great deal of change whether you like it or not, so much so that I’d even say that I think of myself now as my new self that I’m still getting to know and trying to reconcile with my old self. This is obviously a very difficult and distressing form of dissonance. I’ve had to acknowledge the permanence of the loss of my old self and attempt to integrate what remains of my old self with the new as best I can.
As if it’s not bad enough to feel so unsure of yourself, you then get to face the added embarrassment and shame that arises from malfunction or loss of function of your body in various ways: asking for help, needing a wheelchair, constantly stopping in the bathroom, side effects from medications (weight gain/loss, mood swings, etc.), always missing out on things from family time to outings with friends to date night…each of these things can have its own given effect on your self-esteem for more obvious reasons. I often feel weak when asking for help or when in a wheelchair or using other mobility devices. Constantly needing to go to the bathroom makes people uncomfortable as these bodily functions are still taboo and not to be discussed. Weight gain or loss can greatly alter self-image. Always having to say no to invitations and always missing out on events with family and friends, whether something small or an important day, makes me feel like an awful friend, family member or significant other, and not being included makes me feel useless and unwanted.
I’m certainly not trying to say that anybody should feel embarrassed or have lowered self-esteem because of these things. I’m saying that because of the way disability is treated in our society and because of the way humans typically seem to react psychologically when it comes to chronic illness (i.e. often a bit too proud to admit that you need as much help as you do, kind of stubborn in asking for and accepting help or even in accepting that you’re sick, etc.), this lowered self-esteem unfortunately seems to be the norm for people with disabilities and chronic illness.
This diminished view of the self creates all sorts of emotional problems. Aside from the anguish caused by the constant pain and the ever-present fear of the future, my main source of depression and anxiety has come from my issues with how I feel about myself now. I don’t feel like I really know who I am anymore, and I don’t know that I like who I’ve become. I feel worthless and like a burden every day. I’m embarrassed and ashamed of my symptoms and what I cannot do. I feel inadequate in every domain of life. I despise my body for what it’s done to me, and I have a really hard time taking care of it. All of these things I feel are more painful for me than the physical pain.
This harsh view of myself creates anxiety and depression that in turn affect me physically by causing more pain, which creates more anxiety and depression, which affect me physically, and on and on creating a vicious cycle. This lowered self-esteem has also affected nearly all of my relationships – it makes it hard for me to feel that I deserve the love I am shown, and I feel that I’m a burden to everyone, which is frustrating for the people who love me to hear because they don’t feel that way. It’s affected my job and my writing, as I don’t have confidence in myself. And it affects my desire to even take care of myself as well as I should – I don’t really feel like I deserve all the time, money and effort required to keep myself alive and (barely) functioning.
As you can see, the way that chronic illness affects a person’s self-esteem is extremely complicated and a lot more impactful than it might initially seem. I think it’s a problem that is rarely articulated but that is very prevalent and needs to be brought to awareness, especially because this can create mental and emotional distress that alone are bad enough, but that can also worsen physical symptoms and perpetuate the pain. And unlike the physical aspects of most chronic illnesses, I think these self-esteem issues can be helped to some degree.
I know this recommendation is going to be especially hard, but it’s extremely important. I’ve found that it’s incredibly important to allow yourself to be vulnerable and express feelings of inadequacy or shame to your loved ones. Chronic illness and the physical pain it often comes with are extraordinarily isolating. The pain is insidious in that it makes you feel that you deserve everything that’s happening to you, that maybe it’s actually all your fault. Or you start to question why you can’t get better, if you’re really as sick as you say you are, if you’re really doing as much as you can…
It’s so easy to get into a downward spiral of anxiety and depression and self-hatred when you keep this all in your own head. Trust me, I’ve been there. I still do keep most of this to myself, and it’s not a healthy habit. I think that we all feel that we’re protecting our loved ones because we’re inadequate or burdensome or don’t deserve their care. My mom has pointed out to me before that I’m not even giving the people in my life a chance to take care of me. All of my worries about protecting them and feeling that they wouldn’t be able to handle it all if they knew how bad it really is, while stemming from my feeling like I’m not worth the effort, are presupposing what they can deal with and how much they care about me and value me. These self-esteem problems are overflowing to taint not only my view of myself but my view of others without me even realizing it. I have been very blessed with a lot of trustworthy and loving people in my life, and these feelings of inadequacy and unworthiness are holding me back from trusting my loved ones as much as I could and as much as they deserve.
The discomfort that vulnerability of this magnitude may bring will be worth it in the end. Someone who loves you will always reassure you and will help you readjust your frame of reference when anxiety, depression and pain have distorted it. They will remind you that you are worthy of love, that you are not a burden and that you are capable and strong. If, for some reason, you were to speak to someone who did not respond in this way, they probably don’t deserve to be in your life. That may sound harsh, but as I just said, you deserve to be shown love and compassion. Chronic illness is exhausting enough without any added negativity from people who are supposed to love and support you.
Outside of seeking reassurance from others, I’ve also had to look inward. In order to get to know my new self and to learn to like and appreciate my new self, I’m not going to lie: it’s taken time and I’ve had to get creative. I’ve had to learn to readjust my views of success and accomplishment. But just because these new kinds of accomplishment aren’t what I had planned for myself, that doesn’t make them any less exciting or important and that doesn’t mean they should be any less fulfilling.
In spite of the losses I’ve faced, I’ve found new hobbies and activities that I’m passionate about and that I’m actually good at! I’ve realized that broadening my skillset and finding new talents has made me more diverse and interesting. I feel like most people don’t ever have the chance (or aren’t ever forced) to step outside their comfort zone and explore. It’s scary to try new things, and I obviously miss my old passions. However, overcoming this fear and developing new skills and talents is always impressive and is especially so when doing this while ill! It’s something I’ve become proud of!
That being said, I don’t want anyone to think that I’m understating how awfully painful it is to be forced to change yourself or how hard it is to find new passions to give you a sense of purpose. I don’t want anyone to think that I believe these suggestions I’m giving for changing your viewpoint to help your self-esteem are simple to apply or instant fixes. I don’t want anyone to think I’m minimizing the pain of the loss. I want you to know that I think you’re incredible because of the fact that you’ve survived those things and have continued moving forward, no matter how slow.
Even if you’re sick and you haven’t found new activities or even if you can’t get out of bed, what I just said about you being incredible is still true. You’ve survived so much and you’re still here fighting! I mention finding new things to do as a way to better self-esteem because I know it’s something helpful when possible, but there are so many things I feel are more important and that have been more fulfilling for me.
Being sick has forced a lot of life lessons on me that some people may never learn – lessons about patience, how to deal with pain and difficulties with grace, immense empathy, that the little things often mean more than the big things in life. It’s not exactly what I’d call fun to have these lessons forced upon you, but that’s another lesson I’ve learned – that life unfortunately isn’t fair and doesn’t always give you what you want (understatement of the year). But I’ve been thinking about how much more I appreciate life now and how much I value the things I have! Also, I think I understand more about pain and can truly empathize with others who are hurting. I feel like I can truly help people because of the pain I’ve experienced. I don’t know about you, but I think that’s pretty darn cool. And I feel like it takes immense strength to not only survive chronic illness, but to continue appreciating life and showing love to others when in constant pain. It’s also taken strength to rebuild myself and my self-esteem. I have to give myself credit for that. And finally, as much as I wish I was healthy, I fight for my life every day and I’ve won every single time. If that’s not badass then I don’t know what is!
You are valuable simply because you exist. Being sick is hard enough without the added stress of fighting against accepting who you are. Please try to give yourself the credit you deserve and love yourself.