How To Tell Your Family About Your Chronic Illness

My hand shakes while I dial the numbers on my cellphone. I decide that I will call my mother first since she might be able to console me the most.

“Hi Mom” A shakiness in my voice. She always knows how to tell when something was wrong. No matter how hard I try, her sixth sense takes over and she immediately knows I am upset.

“Hey” she says, “What is wrong?” A question that I was hoping to avoid until after some of the small talk like “how is the weather” and “how was your day at work”.

Minutes before I had received the most heat breaking email I will ever read.

Dear Mr. Gay,

We reviewed the results of your MRI and we believe that you have another lesion. After reviewing your past MRIs, we can conclude that you have MS.

From: Doctor XXXX

Immediately my chest goes tight. Did I really just get diagnosed with Multiple Sclerosis through an email?! Did they really not have the courtesy to call me?! I am shocked and it takes me a few minutes to comprehend what the email is really saying.

“Mom” I say on the phone. “I just got an email from the doctor”

I hear her breath getting heavier. I know that she takes news from the doctor just as hard as I do.

“What does it say?” She tries to sound positive.

“I was diagnosed with Multiple Sclerosis”. It comes out awkwardly. This is the first time I have said it out loud and it just doesn’t sound right. ME? I have heard the term Multiple Sclerosis thrown around a lot in the past months, but I never thought it would happen to ME.

I pace back and forth in the hallway at work, not knowing how to react. Should I stay at work? I feel relatively OK that day. Maybe I should stay at work and try and keep my mind off of the email. NO, I can’t just sit here like everything is OK. Sure I feel like I have minimal symptoms right now, but emotionally I am a complete mess.

Time to leave.

On the drive home, I don’t know how to react.  My body is a battle ground of emotion. Fear, anger, sadness, and anxiety fight to take control. A tear falls from my face. I know that I will be fine, and eventually I will get through this, but in this moment I let my emotions take over.

I take my key out and my shaking hand opens my apartment door. I am alone, stuck in an empty room with my thoughts.

I have always been a positive person, but this time it seems like too much to handle. Today is not a day to be positive. Today is a day to feel sorry for myself and to think about all of the things I picture myself missing out on because of my new illness. More tears begin to fall down my face. This whole experience just doesn’t feel real.

In the moments after being diagnosed with a chronic illness, we struggle to handle the barrage of emotions that are attacking us from the inside out.

It is not our fault that we are on an emotional roller coaster, but we do need to realize where we are on an emotional journey before we tell someone about our chronic illness.

Below is a list of emotions that you may experience when you are diagnosed with chronic illness. Along with the list, are tips for telling your family members based on your emotion. One thing that we need to realize when telling someone is that depending on how we feel, we may expect different responses.

Emotion 1: Shock.

 

 

When I was first diagnosed I needed a moment alone. I needed time to comprehend what it meant to be diagnosed with chronic illness. During times of shock, I realized that I just did not want to tell anyone. I wanted to understand what MS meant before telling people I have it. Other than the possible, “you will be ok”, I didn’t want anyone else’s opinion since I had yet to form an opinion of my own.

 

 

Emotion 2: Fear

Fear of what the future might bring is one of the hardest fears we need to overcome with chronic illness. While telling a family member about your chronic illness when you are in a moment of fear, make sure that you look up positive stories before talking with them. One of the worst things you can do it explain everything that could go wrong only to have your family member keep bringing up your fears in future conversations. You will get over your fear, but some family members may not so easily forget about the worst that can happen to you.

Emotion 3: Anger

 

 

Why me? That is the question I kept on asking myself. We all have a sense of “bad luck” by being diagnosed with chronic illness. Take deep breaths before telling your family member about your illness. You need them to understand that you are not mad at them, but mad at the situation.

 

 

Emotion 4: Sadness

Yes, grown men can cry. I am living proof of it. At 6 foot 4 inches tall my tears might hit the ground harder than yours, but that is the only difference between me and you. We all need to cry some times, especially about our chronic illness. While telling a family member when you are sad, pick the family member that will listen. During times of sadness we often just need someone to give us a hug and let us know it will be OK.

 

In the end, no matter how you feel today; you will once again be happy. It may take days, weeks, months, or even years but it will happen. Trust me. Keep on fighting through and whatever you do, do not fight this battle alone. Find someone you have a close relationship with, and tell them. After all, it is always good to have a shoulder to cry on other than your own.

Thanks,

Dave