Why being diagnosed with a chronic illness can feel like grieving.

When I was diagnosed with inflammatory arthritis I was relieved!  I didn’t expect to feel relief; I expected to be devastated, to be distraught about my future.  Actually the main feeling was confusion, about the feeling of relief, but there it was.  My journey up to this point was filled with doctors telling me to come back in a month. Telling me it was definitely nothing to worry about and to take a course of ibuprofen!  I was, very secretly beginning to doubt myself. I was starting to doubt my very real pain and was beginning to worry that it was all in my head.  It was a classic example of blindly accepting the opinion of an authority figure and doubting your own instinct.

So my relief, as confusing as it was, was welcome, I actually cried. I finally felt validated and the sheer enormity of the diagnosis paled into temporary insignificance.  Of course that didn’t last long, soon I began to try and accept what my future could look like, and it was uncertain.  It is a funny thing to try and look towards the future when you have no real way of knowing what it will be like.  It is inevitable that we as humans look ahead, probably more than we should.  However, when you are told that your future could be very different than you expected, it is difficult to comprehend and accept.

I likened it to grieving, but it felt odd to grieve when I hadn’t physically lost anyone.  After a while of mulling this over I came to the conclusion that I had lost someone, the old version of myself.  If you have ever lost anyone you may have come across the 5 stages of grief developed by Elizabeth Kubler-Ross. This is explained in her book ‘on death and dying’, and helps people try to understand and come to terms with their loss.

I am sure that understanding this process would help tremendously if you had lost a loved one. It doesn’t quite fit however if it is part of yourself that you have lost. Jennifer Martin Psy D developed her own version of the stages of grief in relation to chronic pain and illness.. It really resonated with me so I will share this with you and my experience of this also. 

I will start by saying that these stages are not necessarily felt in the order that they are presented in. In fact you can go back and forth for a very long time before getting to the final stage. They will be experienced very differently from person to person.

Denial

This is the stage where you feel shock and disbelief.  Those feelings turn into denial as you imagine how your life will be changed.  Dr Martin says that this can be particularly dangerous for those with chronic illness as it can stop them getting the treatment they need.

My first feeling was relief, as mentioned above. It didn’t last long and it was followed quickly by a very brief stage of denial.  I think this was mainly because it took so long for me to be diagnosed. I had been going through the denial stage for ages before I knew exactly what I was dealing with. Even though I had a pretty good idea (you can read my journey to diagnosis here).

Pleading, bargaining, desperation

This is the stage when you pretend that nothing has changed. You try and live as if everything is as it was.  This is me stubbornly taking the stairs when I knew I should have taken the lift.  Or stubbornly struggling to open the bottles I now find difficult. Even though I know my daughter feels so helpful when she does this for me.  Can anyone relate to this, what are your experiences? I would love to hear some stories.  This stage also includes finding fault in yourself and questioning if you could have done something differently. Of course, beating yourself up like this will not change anything but it is a normal stage of the process.

Anger

This is a difficult stage and one that I’m sure gets revisited often.  Anger at the diagnosis, anger at the changes you have to make, anger at the things you can no longer do, anger at the lack of treatment options and anger at the pain!  The list really is endless and I know for me a lot of anger was geared towards the Consultants.  Especially when they were trying to mask my symptoms with medications and help with the pain when all I could think was “I don’t want a sticking plaster, I want to get to the root cause, and surely this cannot be the only way”.  Anger needs to be felt, as difficult and unpleasant as it is, to aid the healing journey.

Anxiety and depression

Anxiety and depression otherwise known as fear and sadness can be so challenging.  It is sometimes felt that people should “snap” out of these feelings.  The reality is that feeling sad about losing a part of you is totally natural and may last a long while.  Allowing yourself to feel sad is healthy and important and totally ok.  Dr Martin advises that it is important to understand that this sadness is not a sign of mental illness. Feelings of fear may also be present especially a fear of the future, this again is all part of the grieving process.  So allow yourself the time to feel sad or fearful, knowing that it is a natural part of the process you are going through.

Loss of self and confusion

This is the stage of questioning your identity and it really hurts.  For me personally one of the hardest things to manage is not being able to train in karate as vigorously as before.  When you participate in an activity that is more like a lifestyle than just a hobby, it becomes a huge source of anxiety when you suddenly cannot do it anymore. It feels awful that when you try, it becomes very apparent that your physical ability has altered greatly.  This is a big heart ache for me, and my journey towards dealing with that is something I will elaborate on in a future post.

For you it may be a career that has changed or the fact that you cannot socialise like you once did.  This stage is of particular importance to mention if you have adopted a whole foods plant based diet to manage your diagnosis.  Or if you have given up certain things that society deem as normal.  Like alcohol, sugar or caffeine.  Everything changes; you can no longer eat or drink like you once did.  If you did this regularly in a social setting as a source of pleasure, it can be a great loss.  The difficulty this brings gets easier with time, trust me on that.  Just have faith in the journey.

Re-evaluation of life, roles and goals

We give up a lot when we have a chronic health condition. It forces us to rethink who we are and what our roles are.  We all have lots of roles; wife, mother, daughter, friend, carer, employee, housekeeper to name a few.  What happens to these roles if functioning normally is inconsistent? How do we feel about ourselves if we cannot carry out all of these roles anymore?  This is where careful re-evaluation comes into play, can the role be adapted?  Can being kind to yourself while pondering this help?

Dr Martin describes this really well by saying “while we were once able to do it all, we are now re-evaluating what absolutely has to get done during our days”.  We all know the days when the fatigue kicks in and it takes all of your effort just to get out of bed!  Goal setting may need to be changed also to fit in with your new life.  It doesn’t have to be a negative thing, something else may present itself that is more manageable and that you hadn’t considered before.  Re-evaluating roles and goals is an important stage of healing.

Acceptance

It is a common misconception that acceptance in this scenario is about finally being ok about the “new you”, but this is incorrect.  You may never be completely ok with it but you do need to work towards accepting your new reality.  This may take time, maybe even a long time.  Nevertheless as long as you are moving towards this, I think that is positive and empowering.  Something that really needs to be praised, it’s a huge feat!  A new you doesn’t mean a bad you, your personality traits, sense of humour and everything that makes you, you, are still the same, it’s just a little different.

I really hope that this has given some clarity to the grieving process that you can go through when you have a chronic illness.  I also really hope that if you are going through something like this that is difficult, that you will, after reading this be kinder to yourself while going through the process. 

It’s ok to grieve; you need to, it’s natural. You really do not need to feel bad about it.

Wishing you health and happiness,

Laura