Mourning the Loss of a Life Once Had

As published on Pain News Network (www.painnewsnetwork.org) on October 20, 2015. 

Being diagnosed with a chronic condition is a loss.  In fact, it is comprised of many losses. 

It may be a loss of the person we used to be.

It may mean a loss of independence.

It may mean a loss of dreams and goals.

It may mean a loss of some of the people in our lives who we thought were close.

It is the loss of the life we once had.

For many of us with chronic conditions, living with pain or illness means daily medications, injections, surgery, physical therapy, and weekly or monthly doctor appointments.  Not to mention living with constant pain. 

These are things we could never have dreamed of before our diagnosis. We are forced into a life-long journey that is strange, painful and full of new challenges.

We now need to try to figure out how to help our family and friends understand what we are going through, while we ourselves try to decipher what it means for our future.  We need to figure out how to balance work, family, kids, taking care of a home, and hobbies – all now with pain, fatigue and frustration. 

Often times, depression and anxiety step in when we realize that the life we once had is now gone and that our future is filled with the unknown.  The mourning process begins.

It is important at this point to allow ourselves to experience the mourning process.  There is no one-size-fits-all when it comes to grief and mourning.  Cry, scream, and yell if you have to.  Talk to a friend or therapist if it would help.  Start journaling.  Write a letter to your pain and rip it up or burn it.  It doesn’t matter what you do -- just do something!  And then, at some point, it is important to try and live a new normal.

Finding a new normal means weaving our way, however slowly, through the new challenges we face daily.  Do some research and find a great doctor who you trust.  Research the medications you are being prescribed.  Find what works for you, whether it’s hot/cold packs, a heating pad, medications, rest, a support group, yoga, acupuncture, meditation, or light exercise.

Plan for the future as best you can:  Set new goals and make a plan to reach them.  Do what you can each day.  Talk with your family and friends about what you need from them and work on being comfortable accepting help.

Having a chronic condition, however painful, uncomfortable, horrible, scary and unfair, doesn’t mean you can’t be happy again.  But in order to be happy it is important to mourn the loss of who you were and slowly put the pieces of your puzzle back together.

 

Accepting Chronic Pain: Is it Necessary?

As published on Pain News Network (www.painnewsnetwork.org) on March 25, 2015

A patient of mine told me the other day, “I don’t think I will ever be able to accept my chronic pain. It has completely changed my life.” 

I think this is something that most people with chronic pain contend with at some point in time; wanting to hold onto hope that their diagnosis isn’t chronic or not wanting to come to the realization that they will have to live with the pain forever.

When most people hear the word “acceptance” they equate it with the notion that they should feel that it’s okay or it’s alright to have a chronic condition.  Many people don’t ever feel okay about having to live with pain or an illness for the rest of their lives. It is not something that is easy to get used to and it’s not fair.

• Accepting chronic pain does not mean giving into it and it doesn’t mean that you stop looking for treatment.
• Accepting chronic pain does not mean accepting a lifetime of suffering.
• Accepting chronic pain does not mean you are never allowed to feel angry or sad.
• Accepting chronic pain does not mean that you have to give up hope for the future.

When I use the word “acceptance,” I mean accepting the reality of your situation and recognizing that this new reality could be permanent. Those of us with chronic conditions may never like this reality and it may never be okay, but eventually it is necessary to accept it and learn to live life with it. It is the new norm with which we must learn to live. 

Acceptance also involves making adaptations and alterations to our lives.  We must find new things that bring us joy and we must have hope for the future.

• Accepting chronic pain means learning to live again.
• Accepting chronic pain means advocating for ourselves and our health so that we can be as healthy as possible.
• Accepting chronic pain means learning our limits and learning to cope with feelings of guilt when we have to say “no.”
• Accepting chronic pain means being able to look at your diagnosis as something you have, not who you are.  Your condition does not define you.
• Accepting chronic pain means re-evaluating your role as a husband/wife, mother/father, etc. as well as your life’s goals -- and figuring out how you can maintain these roles and attain your goals with your chronic condition.

For many of us, learning to accept our chronic condition isn’t easy.  It is a learning process with a lot of ups and downs.  It is something we may resist and something we may think impossible.  It is difficult to accept something that has completely changed our lives and possibly the direction we thought our life was going to take.

Why is it necessary to accept your chronic condition?

Once you are diagnosed with a chronic condition, it will be always be with you.  The sooner you are able to begin the process of acceptance, the sooner you will be able to learn exactly how to live with it.  It is also how you will learn to cope.

Accepting chronic pain means learning to live life in a different way than before your diagnosis.  It means learning to pace your activities, educating yourself, taking your medications, advocating for yourself, and surrounding yourself with support.  It also means accepting that some aspects of your condition are out of your control. 

Chronic pain can be unpredictable.  There may be days when you feel in control of your pain and you are able to accomplish everything you would like to.  There may also be days when your pain is unbearable, you feel angry about your situation, and all you can do is rest.  Accepting your chronic pain means adjusting and adapting to the ways in which your life is different now that you may be living with this kind of unpredictability.

Your life may never go back to what it was prior to your chronic pain.  But that doesn’t mean you can’t live a happy, successful, hopeful life with pain.  Learning to accept your chronic pain can help you get there.

Psychological Stages of Chronic Illness/Chronic Pain

A little over a year ago, I wrote a post about the five stages of grief developed by Elizabeth Kubler-Ross and how they could be applied to patients with chronic conditions.  Since that time I have thought a lot about the feelings and reactions I had when I was diagnosed with ulcerative colitis and the feelings and reactions I have had since my diagnosis.  I have also paid close attention to what my patients have been through and are currently going through and I decided that while the stages of grief are accurate, there seemed to be some things missing for those of us with chronic conditions.  As a result, I have added/changed some stages.  Remember, these stages are not linear.  While some people begin in the denial stage, move through each stage and end with acceptance, many people jump back and forth throughout the stages.  Please let me know what you think!

Denial and Disbelief

In this stage, we are in a state of shock and refusal. We wonder how our life is going to change and how we are going to live with those changes. Denial and shock help us to cope and make survival possible.

This stage can be dangerous for people with chronic illness/pain because at this stage if they are in denial about their illness or pain, they may not take the necessary steps to get themselves the treatment they need.

Example: “It’s not a big deal, it will go away” or “The doctor is wrong, I don’t have diabetes.”

Pleading, Bargaining, Desperation

This is the stage where we want more than anything for life to be what it once was. We become fixed on anything that could make our illness/pain go away or anything that could give us some semblance of the life we once had.  We become desperate just to be “normal” again.  Guilt is common when bargaining.  We may find fault in ourselves and what we think we could have done differently. We may even bargain with the pain or illness because we would do anything not to feel it anymore.

Example: “Please just don’t let this ruin my life”. or “If you make the pain go away I promise I’ll be a better person.”

Anger

After we conclude that our pleading and bargaining is not going to result in a change in diagnosis, anger sets in.  It is also an emotion that is often felt later on when the illness/pain progresses or holds us back from doing the things we would like.  Anger is a necessary stage in the process of healing. Feelings of anger may seem never ending, but it is important to feel the anger. The more you truly feel it, the more it will begin to subside and the more you will heal.  Your anger has no restrictions and it may extend not only to your friends, doctors, other medical professionals, your family, yourself and your loved ones.

Example: “This isn’t fair! I didn’t do anything to deserve this!” or “Just give me something that will make me feel better!”

Anxiety and/or Depression

Feelings of emptiness and grief appear at a very deep level.  This depressive stage feels as though it will last forever.  It is important to understand that this depression is not a sign of mental illness or that there is something “wrong” with you.  It is the appropriate response to a life-altering situation.  We may withdraw from life and may wonder if there is any point in going on.  Depression after a loss is too often seen as unnatural or something that needs to be snapped out of.  Being diagnosed with a chronic illness or experiencing chronic pain is a loss – a loss of the life you once had.

Having a chronic illness or chronic pain also may bring up feelings of anxiety; anxiety about what the future holds, anxiety about not being able to live up to expectations now that this illness or pain is present, anxiety about social situations, anxiety about medical bills, etc.

Example: “I’m going to be in pain forever so why even bother”. or “I’m going to be in debt forever.  How am I ever going to pay off these medical bills?”

Loss of Self/Confusion

Having a chronic illness or chronic pain may mean giving up some key aspect of what made us who we were.  It may mean an inability to be physically active like we once were.  It may mean not being able to be as sociable as we would like or it may even mean giving up a career.  You may wake up one day and not recognize the person you are now.  You may question what your purpose is now, while before your diagnosis it was so clear.  This stage may occur at the same time as Anxiety and/or Depression or it may be separate.

Example: “I don’t even recognize myself anymore.” or “My career was my identity.  Who am I without that?”

Re-evaluation of life, roles and goals

Having a chronic condition often means giving up a lot.  We are forced to re-evaluate our goals and futures.  We are forced to re-evaluate who we are as a husband, wife, mother, father, sibling or friend.  While we once had a successful career that gave us a purpose, we may find ourselves beginning to question what we can do for work in the future and how we can contribute to our families.  While we were once able to do it all, we are now re-evaluating what absolutely has to get done during our days and how we can accomplish these goals while still remaining in a positive mood at the end of the day.  Re-evaluating your life, roles and goals is a crucial first step in accepting your condition.

Example: “I may not be able to be a nurse anymore but maybe I could teach classes a couple times per week.” or “I can’t be as physically active with my husband anymore so what else can I do to show him I love him?

Acceptance

Acceptance is often confused with the idea of being “OK” with what has happened. This is not true.  Many people don’t ever feel OK or all right about having to live with pain or an illness for the rest of their lives. This stage is about accepting the reality of your situation and recognizing that this new reality is the permanent reality. We will never like this reality and it may never be OK, but eventually we accept it and we learn to live life with it. It is the new norm with which we must learn to live and we must go on despite it. We must make adaptations and alterations to our lives. We must find new things that bring us joy and hope.

Example: “I’m not going to let this define me. I will learn to deal with this the best I can”.

(c) 2015 Jennifer Martin, Psy.D

How To Combat The "Why Me's"

If you have a chronic illness or suffer from chronic pain, you have no doubt asked yourself “why me?” at least once…or more likely, a hundred times. I know I have. This question usually comes when you are not feeling well, when things aren’t going as you planned, or when you are in pain. It is something that is hard to move past. It can be frustrating and all-consuming at times. It can be depressing and can provoke anxiety. Here are a few tips that I hope will help.

1. Learn to accept that you may never get an answer. For the majority of us, there is no answer to “why me?”. Unfortunately sometimes things just happen. Acceptance doesn’t necessarily mean “it’s okay”. I’m not asking you to say that it is okay that you have an illness or pain. When I talk about acceptance, I mean being able to make necessary adjustments in your life, learning your new normal, and learning that despite your chronic illness or pain you can still be happy. Learning to accept that you may never get an answer to why this happened to you will be a process. It is not something that will happen overnight. You may want to resist it and that’s alright. It is not fair that this happened to you but with some hard work, dedication and a little reorganization of priorities, it is possible to be happy and to accept not having an answer to “why me?”

2. Find meaning. Ask yourself what good could come out of your situation. I guarantee that if you are open to that question, if you take the time to think about it, and if you are honest with yourself, you will likely come up with at least one positive thing that has come out of all the bad. For me, the meaning in my situation is that I am able to counsel others with chronic illness and chronic pain. It is what I love to do and I have been able to take my own experiences and knowledge and help others. For you it doesn’t have to be something as big as a career decision. It may be something as simple as the fact that you now have more compassion for others, you don’t judge people as quickly as you used to, or that your illness or pain has taught you to appreciate the small things in life.

3. Find a passion for something. Try to focus your attention on something other than “why me?”. Find a hobby or a passion that will make you happy and take your mind off of “why me?”. It is okay if the question comes into your mind once in a while. When it is constant or interrupts your quality of life, your focus, or your happiness, that is a problem. Finding something that brings you joy will help you to cope.

4. Find support. You are not alone. As I stated above, the majority of us with a chronic illness or chronic pain have asked ourselves “why me?”. If you find that you are having difficulty with this question, find support, either with friends, family, a support group, or a therapist. Talking about what you are thinking and feeling can help greatly.

Accepting Your Chronic Illness

ac•cep•tance:

1. The act of enduring without protest or reaction.
2. The act of recognizing as true.

One of the hardest things to do when you have a chronic illness is to accept your situation. It is something that usually takes time and a lot of hard work to achieve. Why is it so hard to accept having a chronic illness? There are many reasons. Having a chronic illness may mean a complete change in lifestyle. It may mean taking several medications daily. It may mean the inability to do things you once enjoyed. Having a chronic illness may mean not knowing when you are going to feel good and when you are going to feel bad. There are a lot of unanswered questions that come along with having a chronic illness: “Why me?”, “What did I do to deserve this?”, “What is in store for my future?”.

When I talk about acceptance with my clients, I don’t mean that it is okay that you have a chronic illness. What I mean by “acceptance” is recognizing that your situation is long-lasting and making alterations in your life that will enable you to live the happiest, fullest life possible. You can’t avoid your illness but you can learn to live with it without struggling. It also means the ability not to let your illness define who you are. Your illness is something you have, it is not who you are.

So, how do you begin the process of accepting your chronic illness? Step one is acknowledging the fact that you may never get the answers to all of your questions. You may never find out why this happened to you or if there was something you could have done to prevent it. Sometimes it just is. Asking why can leave you feeling helpless. Step two is making alterations in your life. For example, if exercise is something you really enjoyed before you got diagnosed and you are now unable to exercise to the extent you could before, think of ways in which you are still able to exercise. Maybe yoga would be a better option, or if running is too strenuous now, take long walks instead. The third step of moving toward acceptance is to find meaning in your situation. You may never find the answer to why this happened to you. Instead of focusing on that aspect of your illness or on the negative parts of your illness, find a sense of meaning in your situation. Maybe that means leading a support group for others who have the same diagnosis as you do, or volunteering at a hospital, or maybe you have decided that you want to become a doctor because of your experiences. Whatever that meaning is for you, it is important to find something positive to focus on. Lastly, make it a goal to participate in at least one enjoyable activity per week. Having a chronic illness can be life changing. In order to avoid depression and in order to learn to live with your illness, it is important to continue to do activities you enjoy. Maintaining a sense of normalcy in as many areas as you can while making alterations in those areas that are necessary will help you to feel more in control of your life.

Remember, having a chronic illness does not have to be solely a negative experience. Along with the negative feelings and experiences derived from triumphant feelings and strength that come with overcoming obstacles. With each success comes the confidence that you're able to live a full, rewarding life and maybe even a more meaningful life than if you hadn't been diagnosed with your illness.