The Unspoken Truths of People Living With Chronic Illness

One of the hardest part of struggling with chronic diseases is the silent anxiety and trauma associated with being unwell. For myself, I have about 20 serious illnesses – much of which congenital in nature. When I tell my story, I am met with disbelief. It can be either from family, friends, doctors, emergency medical technicians, or hospitals.

Speaking up when you’re struggling is important. However, the reality is that most of us don’t. When you struggle daily you get used to a certain level of pain, symptoms and unwellness – despite feeling like a toy running low on its battery.

Many, myself included, learn to be incredible liars. And not the lying that fakes their illness, but the lying that we do on a daily basis so we don’t have to explain just how bad we are struggling. It could be because we we feel we are a burden to our loved ones. Feeling as though life is unfair. Feeling we’re stuck in our heads with bodies that just doesn’t work. Failing the expectations we set up for ourselves. Not wanting to argue with people who dismiss or disbelieve us. Disappointed in our loved ones who will never get it. Knowing not everyone can take the honesty of our struggle of what is really going on, or the horrors of our hospital stays, ER or doctor visits. Feeling the responsibility to hold up our mask so we don’t scare others. Feeling the hatred of being pitied or shallow a “I’m sorry.”

We wear a mask of joy and cavalier. We push through, because we have no choice. When you’re like me, and have invisible illnesses, it’s even harder for people to comprehend.

“You look so healthy,” they say.

“You’re too young,” they say.

“You’re too pretty,” they say.

“You’ve got to be exaggerating, no one has that many problems,” they say.

“You’ve got to be seeking pain meds,” they say.

“It’s not that bad,” they say.

So, to not deal with the disappointment, not being believed, or being accused, many of us have not the energy nor the desire to convince others of our despair. Leaving us filled with anger and anxiety.

Many times when we seek doctors help, we are faced with obstacles from either insurance companies, hospital, staff and others. Many times we become hypersensitive to being poked and prodded. Other times we fail to have any feeling whatsoever. We can dissociate from what’s going on. All out of self-preservation.

When we do seek help there is always the same failing equation that leads to our either meltdowns, or refusal to cooperate with doctors and facilities. One is that many times doctors rush through their questions. If you ask about things other than the one issue they want to talk about, you are immediately considered combatant. There is always barrage of testings, painful, invasive and repeated. When you question the need to repeat, you are considered disruptive. You are likely to be sent to another specialist, and another and another. Same rush and no time to fully discuss the extent of your issues. Same painful procedures and same long questions. None of which talk to each other. None of which views your issues holistically. (By holistically, I imply to look at the whole body and all the problems at once.) For example: One neurologist will only see you for migraines, while another may see you for dizziness, and another may see you from leg pain. And the list of doctors and facilities and testing is endless at times.

When we see one doctor they only want to talk about one issue, nothing more. Never how one problem is causing a domino effect throughout our entire body. Never how our illnesses are affecting our mental health. Never the anxiety that occurs when we smell the sterileness of our surroundings. All too often we suffer trauma at the hands of the people who are supposed to help us. Many of us develop post traumatic stress disorder. These are the unspoken truth many chronically ill face.

Then we have the days where even our strongest mask crumble. These are the days we panic and cry our eyes out. It doesn’t matter if we are by ourselves or in public. The flood of emotion can be too strong to bare and no about of antidepressants can hold up the floodgates of our personal hell. These are the moments where suicidal thoughts seep in. The feeling that the physical and mental pain is too great to bare it any longer.

It is quite human to want to end our struggling and protect others from that struggle. I know many who struggle as I do. I know many struggle greater than I do. While I know I’m not alone in my frustration, I feel alone. At some point the thoughts of my children rush in and save me from myself. Whoever or whatever you put before yourself, is what you must hold onto in those moments. Allow yourself to feel it all, but you mustn’t live in those moments.

Remember, “This too shall pass.” It may pass like a fucking kidney stone sent from the abyss of hell, but it will pass. Once it does pass, forgive. Forgive yourself for any awful thing you told yourself. Forgive the lab techs that stuck you 10 times. Forgive the doctors who did not listen. Forgive those who dismissed your pain. Remind yourself of the peace that happens in the briefest of moments for that is what we all live for. Be a beacon of hope to others who are going through the muck as well.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or reach the Crisis Text Line by texting “START” to 741741.

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

Gettyimage by: ValentinaPhotos

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

Related to Dysautonomia

A patient at a doctor's appointment.

What You Should Know About Having a Patient Advocate

If you are reading this, then you likely live with a chronic illness. Recently, I published an article on the treatment of patients who have difficult to diagnose illnesses. I can only speak to my experience with dysautonomia, Ehlers-Danlos syndrome and Chiari malformation; however, this article is applicable to many illnesses that are complicated and [...]
christmas photo of mother and two sons

How I'm Using My Own Diagnoses to Honor My Late Mother This Christmas

My mother’s birthday is on December 19th, right before Christmas. I am not able celebrate in person with her anymore, as she passed away almost three years ago. I miss her terribly and I still have moments of profound grief. I still need her as much now as I did when I was a child. [...]
woman's backpack filled with essentials for managing dysautonomia

What I Keep in My Holiday Survival Kit as Someone With Dysautonomia

Everybody knows the holidays can be a stressful time for anyone, but especially for those with chronic illness, mental illness, disability and more. For us, the holidays can mean chaos for our bodies and minds with little time to rest and recover. For people who know me, I carry around a backpack everywhere I go every [...]
woman dressed as superhero

The Importance of Virtual Races for Those With Dysautonomia

By Reanna Mathis Virtual races are taking the running community by storm, as it has become a convenient way for racers to compete in a race they would not be able to attend in person. The very “first” type of virtual racing started many years ago before runners had national meets. The participants would mail [...]