The Realities of Living With a Chronic Illness
Living with a chronic physical or mental illness can be a very isolating experience. Often these illnesses develop unexpectedly and the shock of going from healthy to unwell overnight can feel like whiplash. The one struggling is left reeling, needing to readjust to a body and mind that does not work the way it used to. There is often resulting grief over a life that can feel limited in comparison to before. Most chronic physical and mental illnesses are invisible – there are no instantly recognizable symptoms or signs of sickness. Many struggle in silence, faced with stigma and prejudice in a world that idolizes health.
I’ve lived with chronic fatigue, pain, depression and anxiety for the last nine years. Now I’m seeking to give a voice to those who bravely persevere through illness every day, in the hope that the stigma surrounding chronic physical and mental illnesses may be lifted. The words I share are inspired by friends and strangers I’ve surveyed; I’m infinitely thankful for their courage and honesty.
1. Guilt and Expectations
Life is unpredictable when you live with an invisible illness. Every day you wake up not knowing how you will find the energy to cope with the small things, let alone the big things, when your body and mind are fighting against you. Choosing to go out one day often means sacrificing the next day (or three!) to rest, because you deplete a greater percentage of your energy and it takes twice as long to recover. It’s frustrating to watch people your own age do things you desire to do, but that you are physically incapable of. You may worry people will think you’re lazy, when often people with invisible illnesses are actually the most driven – you have to be motivated to persevere through your illness!
The unpredictable nature of an invisible illness means that you often make plans, only to have to cancel them at the last minute. You may feel guilty for not being able to push through and live up to people’s expectations, even though you cannot control your body or mind. You fear people will conclude that you’re unreliable and will stop asking to spend time with you, increasing your isolation. Every time you make plans, there is an internal battle between knowing that seeing people may make you feel better, but will cost you physically and mentally.
2. Limitation and Learning
Invisible illnesses can be incredibly limiting, requiring huge lifestyle change and a need to manage every detail of life. There is often a sense of acute loss that accompanies this life adjustment. People with invisible illnesses are often restricted in the amount of work – both cognitive and physical – that they can do daily. Working and studying can so greatly deplete your mental and physical energy resources that there is little left over for interacting socially, impacting relationships with family and friends. You need to pace your activity and plan ahead in order to “budget” your limited energy. Your decreased capacity may limit your involvement in extra-curricular activities, like sporting groups and ministries. Management of invisible illnesses can sometimes also require dramatic changes in diet, which can bring its own stigma and social isolation.
While being limiting, there are also many positives that come from having an invisible illness. People who face daily pain, fatigue and/or depression often learn to empathize with others who struggle. Struggling is a universal aspect of human life, and when you struggle, it enables you to become more tolerant and accepting of those who also face adversity. There is a sensitivity and compassion that is unique to those who understand hardship. When you are restricted in what you can do on a daily basis, you can become more aware of what is important in life, and learn to truly value the people around you. The stigma surrounding invisible illnesses teaches us to be more discerning and slower to make assumptions about people. Though illness can be very isolating, it also provides opportunities to form unlikely friendships with people who share similar experiences.
Living with an invisible illness can also teach you the importance of self-care. You become more aware of how your body and mind work, and learn to establish and maintain boundaries to protect you from pushing yourself beyond your limits. Having an illness enables you to adopt a slower lifestyle – to value rest and make space in life for reflection, meditation and prayer. You learn to be patient with yourself and others – to see weakness as an opportunity for growth. To cope with the mental and physical strain of illness, many learn strategies that empower them to be more intentional in everyday life.
3. Fighting Fear
Most people with invisible illnesses fear the impact that their illness has on the people they love. You may worry that you will lose contact with friends and family, as for many there is no greater fear than being alone. You fear that friends and family won’t understand how much your illness is beyond your control – how desperately you want to just be “normal” again. You fear that new people you meet won’t see the real you, because initiating conversation and articulating what you think and feel is exhausting. Those who are single often worry about finding someone who will accept them and see beyond their illness. Those who are married sometimes fear how their illness burdens their spouse and how it may impact their children.
Many fear how their illness will control their lifestyle, and limit them from living a fulfilling life. Often, the prognosis for physical and mental illness is either unknown or lifelong, so it impacts your whole life – not just a few days of your life like the average illness or stress episode. You fear how your illness will affect your independence and ability to achieve your life goals. You may fear missing out on opportunities and experiences that others your age have. Many people with invisible illnesses worry about how the illness will affect them long term and fear relapsing or getting worse with age.
4. Impacting Others
Invisible illnesses don’t just impact those who live with them, but also those who do life alongside them. Family and friends often sacrifice time and energy into looking after you. Your illness can limit how often you are able to go out or where you are able to travel. You are grateful for the way your family and friends try to understand and accept you, illness and all, but may feel guilt that you are hindering their enjoyment of life. Having an invisible illness can be eye-opening for those who are close to you, as your capacity decreases and you depend on them in ways you previously didn’t need to. You may have been the solid rock, the dependable one, the one who always gave their time and energy into looking after others, but now you have to rely on others more. This involves learning that it’s OK – and actually loving – to allow someone else to love and care for you when you need it.
5. Identity and Empathy
When you have an invisible illness, it often feels like the illness defines you and controls your life. Changing your mindset and recognizing that you aren’t defined by your illness is hard, but ultimately freeing. Your illness is part of your life, but it does not change who you are and the value you contribute to your relationships. Knowing who you are and being secure in your identity apart from your illness radically changes how you approach life. You can be grateful for what your body and mind can do, even though your illness may impact your physical and mental functioning. Know that your life has purpose that can be fulfilled even when you are weak – don’t judge yourself based on your own or others’ flawed expectations of who you should be.
Having a strong support system around you is so important for living with an invisible illness. It can be hard to maintain a wide social sphere, but finding a small, understanding group of friends to confide and invest in outside of your immediate family is vital. Connect with other people who share similar experiences with illness – you are in a uniquely valuable position to empathize with others who have the same experiences. Having people in your life who truly understand makes living with illness less isolating. Seek help, and don’t be afraid to admit that you need support. Use what you’re going through to reach out to others who struggle and to educate people on the nature of invisible illnesses.
6. Caring and Listening
For those who support a person with an invisible illness – the best thing you can do is to listen. People with invisible illnesses often get bombarded with (usually) well-intended “advice” about how they should care for themselves and where they should seek treatment. However, for most of us, we’ve heard it all before – usually from the medical professionals who oversee our treatment. We know what we can do to get better and we’re already doing everything we can to be as well as we can be.
In relating to someone with an invisible illness, your ears are your biggest asset. Sometimes we just won’t want to talk about it, and that’s OK. Recognize that until you have experienced a chronic illness yourself, it’s impossible to understand what people go through. Platitudes aren’t helpful, and for many, illnesses don’t just “get better” with time. People sometimes fear saying the wrong thing, so they avoid the subject of illness altogether – which can often be more hurtful than saying something insensitive. Being willing to sit for extended periods of time with open ears, ready to accept and not judge, can be the best way of supporting us.
The most powerful thing for a person living with an illness is that you show you’re willing to be there to help them in whatever way they need. Saying you will be there for someone means walking alongside them for the long haul – however many months or years they will be affected by illness. Supporting someone with an invisible illness means being prepared to initiate communication and perhaps carry a greater load emotionally and practically. Learning what a person’s physical and mental boundaries are is so important. Believe us when we say we can’t do something and recognize we feel grief at having to say no. Be patient with us, and realize we don’t want to be sick any more than you would want to be!
Everyone’s life is unique, and not everything shared will be universally experienced. In writing this article I’ve sought to paint a vignette of what life can be like for those with invisible illnesses, both from my own experience and the stories and survey responses I’ve collected. For those who read this who live with an invisible illness, I hope that you feel less alone and empowered knowing you have value and can live a fulfilling life, despite your limitations. For those who read this who know and support someone with an invisible illness, I hope you’ve gained some insight into their world, and how you can better care for them. Let’s keep fighting to break the stigma surrounding invisible illnesses!
Follow this journey on In Him I Endure.
We want to hear your story. Become a Mighty contributor here.