To Anyone Feeling Alone in Their Chronic Illness Battle: I Understand


While going through a health crisis it can be easy to feel misunderstood. In the beginning of my own healing journey, it was difficult for me to find experiences that were close to my own and this left me feeling lost. Some days, all I wanted to hear was that someone understood. It is easy to share and compare stories with one another, but we can never experience the same thing as someone else. Personally, I see the world so differently now and things I thought I once fully understood, now I truly do. Previously, I used to see photos of other women online looking alive and vibrant, and I thought I was doing something wrong. Now I understand that behind a beautiful, smiling human can be someone going through a lot. What we perceive and view on the outside can be housing something dense and complex underneath. We all show our illness in different ways and we all understand things differently from one another; our experiences are our own.

 

The past few weeks have given me some time to be more still again. I have taken more time to be mindful and present and think about life and this healing journey I am on. I have regrouped and gone inward to remind myself that the more I keep telling myself I am happy, I am healthy and I am understood, the happier, the healthier and the more understood I will become. This time has also given me time to reflect on all I have been through in the past four years and the things I wish I heard in the beginning that would help me feel less alone and more heard. I formed this list of things I do understand and hope that reading it will help others dealing with chronic illness feel more understood too.

I understand that picture of you smiling, dressed up, with makeup on and your hair all fancy took a lot of effort to do. I understand that it is hard to present yourself well when feeling like this.

I understand that picture of you out with family or friends was the first time you have done that in weeks, months or years.

I understand how hard it is to sit with someone and spend time together and that is a lot for you.

I understand the words you spoke in anger yesterday were out of fear and frustration with your illness and not meant to hurt anyone, and the healthy you would have never spoken them. But today is a new day and those words are in the past.

I understand that some days you obviously look sick.

I understand it is hard to be sick when you look so healthy.

I understand how heartbreaking it is to hear people question your disease, to mispronounce it or to ask if it is real.

I understand how hard it is to admit you need a nap when you’ve already done so little that day.

I understand the amazing effect a simple text, email, phone call or visit from someone can bring. That joy that people care and are there for you no matter what.

I understand wanting to give up, feeling backed into a corner and isolated. But know you are never alone. You can never give up and the human spirit is resilient.

I understand you stayed home and missed a family get-together, a party, a wedding or a commitment that the healthy you would never have missed. I understand the healthy you was always on time and clear-headed.

I understand who you once were. I understand that without your illness you are an amazing person with many capable skills. Remember though, you still are now, even with illness.

I understand how being in a room full of people talking at once can make your head want to spin. How the perfume you used to love now makes you sick. How the music you used to find beautiful now hurts your ears. This is all temporary though; nothing in life lasts forever and those things will return to your life once again with greater appreciation for the small things.

I understand going up a flight of stairs feels like climbing Mount Everest. I understand when some days you just take the elevator or stay in bed all day without any walk. Those days of rest, honoring your body and recovery are crucial to your healing and your body and will make it stronger in the long term.

I understand behind that smile, sometimes it hurts. But remember it is proven that even forcing a smile can change your mood, and smiles are contagious. Help someone catch your smile today. Spread it like wildfire.

I understand it took you a long time, lots of doctors and patience to get a diagnosis. I understand you still may not have found the right fit with treatment and I understand that what works for you may not work for others. With our health, we must chose our own path to recovery. What works for you may not work for me.

I understand when you question yourself if maybe it is all in your head, but trust me, it is not.

I understand when people you care about question your illness. I understand that some of the people you thought would be there for you are not. But that is OK. There are people who are and those are the people who matter. This experience can also bring new people into your life you never would have met before.

I understand it is hard to do more than one thing a day and how hard it is to juggle so many doctor appointments.

I understand that fear of never getting better, but you will – you will get better. It takes time and it is better to allow the experience than to resist it. Staying mindful and present while going through a healing journey can help you tune into your body and learn how to stay tuned in. When you are better, you can use this throughout the rest of your life.

I understand the fear on the good days that the bad may come back. But remind yourself that there are good days and it is OK to enjoy them.

I understand that even with support, love, major progress and everything you need, you can still feel overwhelmed and upset. Know that is not a sign of being ungrateful; you are allowed to want better for yourself. You deserve the best of the best and you are capable of getting that.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Grandfailure.


Find this story helpful? Share it with someone you care about.


Related to Chronic Illness

nurse hugging her patient

To the Nurses Who Made Me Feel Like a Hero Instead of a Burden

My brother once gave me this advice, which some might call daydreaming, to help manage anxiety-ridden moments, where regaining control seems like an impossible task. “Literally just think of a happy thought and run with it,” he said. “For example, I start thinking about playing in a huge sports tournament like the U.S. Open. What [...]

To the Body That Turned on Me After Years of Caring for It

Dear body, I remember when I started taking better care of you. I gave up soda and minimized my eating junk food. I learned to eat better, drink protein shakes, take vitamins, work out and I developed a passion for running. I tried many home remedies/recipes, always looking for ways to help you look and [...]
black and white photo of a woman standing next to a window

Fearing for My Future With Illness

Sometimes I’m afraid. There. I said it. I admitted it. Some nights, when I’ve been extremely sick for one day too long, to where my body and my mind feel like they can’t handle one more second of this, I become afraid. if(typeof(jQuery)=="function"){(function($){$.fn.fitVids=function(){}})(jQuery)}; jwplayer('jwplayer_67sD8ND0_F962XJnx_div').setup( {"playlist":"https:\/\/content.jwplatform.com\/feeds\/67sD8ND0.json","ph":2} );   Why? Because I’ve learned over the years that [...]
Lion mother with cub

We Are Lion Moms. This Is Why We Roar.

“Lion Moms” are defined as mothers who have children with a chronic illness. This term is an appropriate spin-off from the term “Dragon Moms,” used to describe mothers who have children who are terminally ill. Whether the “roar” is delivered through a silent act or a loud cry, parents of chronically ill children may appropriately relate [...]