5 Steps to Take After Being Diagnosed With a Chronic Illness

There are events in our lives that are so big that there is a clear distinction between life before the event, and after. Being diagnosed with an illness is like that. There is a marked shift between what life was like before being diagnosed with a chronic illness, and what life is like after.  

Living with chronic illness can change our perception of everything we do and everything we see.  I was 28 when I was diagnosed with Multiple Sclerosis, it was terrifying and incredibly sad. It changed the direction of my life.  After many years, I realized that receiving that diagnosis healed me in lots of ways, but also damaged me in lots of ways.

These five steps helped me to grow into myself after the diagnosis.  After a life of catering to others, I dedicated myself to my own health, and healing my body.  I became more aware of who I am, and what I need. That is the gift chronic illness gave me. Chronic illness also took a lot from me, but that is a post for another day.



5 Steps to Take After Being Diagnosed With a Chronic Illness


1. Mourn 

A chronic illness can be terrifying and destructive, it can destroy our image of ourselves and our ideas of what our future holds. It may not be this way for everyone, but I am certain a significant illness causes each of us to question our existence in one way or another.

We must take time to mourn the losses we feel.

Be sad, be angry, be hurt and disappointed, be afraid of what may happen. Take time to go through the grieving process.

Chronic illnesses can be scary, and very destructive to our bodies and also our hearts and minds. It is important to acknowledge that.  Once you have sufficiently grieved, you will be able to move forward with treatment, healing, research and rebuilding a life that works for you.  The mourning process may never end. For many, myself included, mourning may be something that we come back to repeatedly. That is ok.

We don’t get to decide how long it takes to grieve.  I remember feeling so sick of myself. So sick of feeling sad and lonely and sorry for myself and yet I couldn’t stop.  I considered my diagnosis like a death of all of the things I thought my life would be. Just like the death of a companion, there will be many times that you will feel that loss sink its teeth into your heart.  It will last beyond the time immediately following the loss.

Once you’ve  begun mourning and processed enough to move through the remaining pain, you will.  You will start to rebuild and restore and reimagine your life.  It is a long road to acceptance but the first step is to fully mourn what you have lost.



2. Research 

Learn everything you can about what the diagnosis means.

Research conventional methods of healing as well as holistic methods. Seek out success stories of people who are thriving with chronic illness. Those stories are out there, and they are important. They will balance out the scary information, and provide hope when you are learning about the illness. There are ways to manage chronic illness and learning as much as you can will give you leverage when making decisions about your treatment.

I was unable to research until I stopped denying that I was sick and mourned. It took several months before I was able to research after my diagnosis. I would not even pick up a book and read about the condition. I was terrified and angry, and unable to move forward until I processed this transition. Take your time.



3. Live

It took me a long time to get to stop waiting around for my illness to incapacitate me. I spent months afraid to do anything because I was afraid to trigger more symptoms. I knew it was a possibility that I could I wake up any morning unable to walk or talk or see.  If that happened I thought it made more sense to be close to home.

I was wasting my life being too afraid to do anything. I still had dreams and goals and ideas. So, I got to work getting out of the house, and it was work. I tried everything and anything that piqued my interest. I flew to Costa Rica, I learned to surf, I took cello lessons, I did lots of yoga, meditated for days, met amazing people, participated in a burlesque show, danced my ass off, spent lots of time with the friends who stuck around after my diagnosis.

Finding joy in life is what keeps us going, and whatever that means to you, make joy a priority.




Actively and consciously build a support system for yourself.

As I mentioned, I lost a lot of friends after the diagnosis. It was like an explosion went off in my life and afterwards some things just couldn’t fit back into place.

I was 28 when I was diagnosed, and many of my oldest friends faded out of my life.  I don’t know the reasons but I assume some of them could not fathom the diagnosis and just didn’t know what to say. Some friends did not understand the seriousness of the situation.  Some friends could not offer the support that I needed, and some friends just didn’t like the changes I made in my life. They loved the old Alyssa, the fast living party girl, and didn’t know how to be in my life when I wasn’t that anymore.  

Luckily, their leaving my life made room for new people, new friends who were more aligned to the truth of my life. I stopped drinking, smoking and began to live a healthier lifestyle which opened me up to a different group of friends while closing doors to friends I had been close with for years. It was bittersweet. 

When I stopped focusing on what I wasn’t getting from them and started focusing on what I was getting from other friends and what I was giving myself, I was much happier.



5. Ask

Before my diagnosis, I had so much difficulty asking for help. 

I would literally became unable to speak when I needed help. Coming from an abusive family, I learned that my needs were unimportant, and would bring harm and disappointment if spoken out loud. I internalized this and turned myself into a super woman who took on too much, and took pride in never needing help from anyone. It took several years for me to unlearn my tendency to freeze everyone out when I was under pressure. 

Being super human is not the truth of who we are, and it is certainly not the truth of the human experience, as I understand it. We are meant to live in community with others, offering and receiving help, and support freely. I am still working on building a strong support system for myself and I know it will be a life long process.

I learned to seek out people who had resources and information I needed.  I learned to network to find a good doctor I could trust.  When I was too depressed to get out of bed and too anxious to sleep I asked that doctor for medication.  I learned that it was important to value myself enough to tell people what I needed and to open up that door of vulnerability and humanity.

 There were many times when I asked for help, and got a “NO” and sometimes that NO brought me clarity on my journey with this illness and it brought me clarity as I  built my support system.  All of the YESes and NOs we get are valuable.  



Those are five things I did after my diagnosis that saved my life. Do you have any additions to this list?



3 thoughts on “5 Steps to Take After Being Diagnosed With a Chronic Illness

  1. It really sad when you find out that you have chronic illness but crying is not the answer.As long as you can,live your life to the fullest and don’t forget to thank GOD for all of these. Who knows,HE can do miracle in your situation. Have faith and never lose hope.
    Lewis Perry recently posted…I Can Therefore I WillMy Profile

    1. Thanks for your comment Lewis! It is a difficult reality to accept and crying is necessary for many of us. I agree though, we can’t stop there and spend the rest of our lives in mourning. We can mourn our losses and also move forward with our new reality.

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