No one has every asked me what it feels like to have a chronic illness.
The closest question was when my mom asked me right after I was diagnosed. And at the time, I felt relieved. For months I had been going to doctor appointments and tests searching for answers. Finally I had an answer. I was not crazy.
But I had no idea what living with a chronic illness felt like because well I was just 5 minutes in. And also, I didn’t even know what this illness really was or its true impact.
Now that I’m digging deeper into my mental and emotional health, I asked myself the question. “How does that make you feel?”
How does it feel to have a chronic illness – something that you will have to live with for the rest of your life?
I’ve said many time before that the mental and emotional aspects of chronic illness are often overlooked and untreated. Studies have shown that while doctors may be well equipped to treat the physical aspects of care, they are not as well versed in the psychological, social, and cultural levels of illness.
Discovering Feelings with Chronic Illness
When I was diagnosed, I really didn’t have time to feel. I jumped straight into the living part. The medications, appointments, the naps.
It takes a lot of spoons (energy) to manage chronic illness daily. I could tell you how I felt physically – heavy, tired, dizzy but emotionally I resolved to not only say “i’m fine” when someone asked but to also be fine.
I felt like I couldn’t afford to fall apart emotionally when I was already going haywire physically. So I lied to everyone and even myself.
Looking back, I did a huge injustice to myself.
Why is coping with a chronic illness be so difficult?
When you have an acute illness like a common cold, you know you’ll feel better and be back to normal eventually and its usually within a short finite period of time.
But when you have a chronic illness, there is this looming darkness that it will never go away and that concept can disrupt your life in a number of ways.
Common Feelings with a Chronic Illness
The truth is that having a chronic illness affects your outlook and mood. Some of the most common feelings I’ve felt during my journey:
Sad / Depressed – Sad that this is happening. Mourning the life that was and the life that could have been. (past and future self). Pity for the current state of affairs.
Angry – Mad at myself for this happening. Mad at God for allowing this to happen. Mad at the world. Even those who try to help.
Fear – Not knowing what’s to come. What will my quality of life look like?
If you’ve been lucky enough to not feel any of these things on your chronic illness journey then I am so happy for you. But if you have, I’m here to let you know that you are not alone and these kinds of feelings are normal.
8 Tips to deal emotionally with a Chronic Illness
Below are some tips that may help you work towards emotional well-being:
- Learn + ask questions about your chronic illness. Knowledge is power. Having a solid understanding about your illness make quell feelings of fear. It will also help you make informed decisions about your treatment plan and how you choose to manage your illness.
- Find the right medical team for you: Ive mentioned the importance of a good doctor before. Sometimes you may kiss a few frogs before you find the perfect match. But it’s worth it to have a provider that you feel comfortable with + trust.
- Speak to a professional about your mental + emotional health: If you don’t already have a therapist, I recommend getting one. Maybe your primary care can recommend someone that work specifically with those living with chronic illnesses.
- Have Support Systems you can count on. As you journey, you needs may change. Having family, friends, neighbors, support groups, etc there to help you at different times for different reasons can decrease the stress and strain you feel. The key here is to be open to the help.
- Use self compassion daily. Having a chronic illness may present limitations and challenges. Accept and recognize that your need to care for yourself will take precedence over a to-do list. Give yourself grace.
- Evaluate who and what is important to you. By taking stock of your values and eliminating some of the noise, you will be able to spend your spoons in a way that seems meaningful for you.
- Meditation, Mindfulness + Journaling. These are often great ways to cope with discomfort and relieve stress.
- Find Joy + Gratitude. Even though living with a chronic illness is tough, you are still living. Every day, do something that bring you some type of joy or find something to be grateful for. It doesn’t have to be grand. Small things like watching the sunset or having your favorite drink. It’s the little wins in the day that keep me going.