Grieving For Your Diagnosis

One of the hardest things to deal with in life is grief. Losing a loved one or family member can cause more pain than any physical injury ever will. Grief doesn’t just strike us when a bereavement occurs, grief can also strike with tragedy, but more pertinently, grief also visits us when being diagnosed with a chronic illness. Dealing with the news of a diagnosis can be equally distressing and painful, especially if unexpected, and certainly if you have little knowledge of what you have actually been diagnosed with. Learning how to deal with this grief can often have a profound effect on how you manage your illness in the future years to come, which in turn affects your overall well-being.

The Five Stages of Grief

In 1969 the Swiss born psychiatrist Elisabeth Kubler-Ross wrote a book called ‘On Death and Dying’. In this book she theorised on just how we deal with grief, this was something which was later called the Kubler-Ross model. This theory still stands strong today, and this is still taught as ‘The Five Stages of Grief’. This outlined several stages in which people go through when dealing with grief. These stages are:

  • Denial – “I’m fine really, it’s just a bad spell, it won’t always be like this I’m sure.”
  • Anger – “Why me? What have I done to deserve this? Seriously, who’s to blame?”
  • Bargaining – “I’d do anything to not be like this, surely there’s something I can do, whatever the cost.”
  • Depression – “What’s the point in trying? I’m never going to get better, no point wasting the energy.”
  • Acceptance – “I can’t change this, I just need to know what I can do to fight it, make the most of a bad situation. Find the positives.”

These words may already be striking a chord with some of you, but it’s important to note that not everyone will go through all the stages, as coping with grief is an individual experience. People can also get ‘stuck’ in one particular stage. But recognising that you are in a particular stage can be key to helping you move on, which ultimately helps you cope, getting you to acceptance.

Finding Support

In order to move on and come to terms with being diagnosed with a chronic illness you need to be able to identify when you need help. It can be hard at times to recognise this yourself. Grief not only affects the individual, but those around them too, especially loved ones. Confiding in friends / family may be all you need to help you through this emotional rollercoaster ride. However; this is not always enough, but that doesn’t meant your alone.

It can be hard when first diagnosed to know where to look to for support and information. Especially when you have a chronic illness like Ankylosing Spondylitis (AS) that no-one else has ever heard of. This is why charities and organisations such as The National Ankylosing Spondylitis Society (NASS), and the Spondylitis Association of America (SAA) are invaluable to anyone with AS, newly diagnosed or otherwise. Not only do they have a wealth of knowledge about your condition, but they are able to help you by putting you in touch with the right people. Having someone you can call (via their helpline) should be a huge reassurance, because you are not alone.

Starting to Cope

Coping with this grief is an individual process, with us all reacting differently to the circumstance. Recognising your emotions and finding support is imperative to progress to a state of acceptance. Coping with a diagnosis of chronic illness can take a long time to grieve over, but you can at least take a small amount of solace knowing that we have all grieved. Whether your support comes from an official charity, or you seek peer support via forums and social media; one thing I can assure you is that any sufferer will help another to get through the difficult times, because they understand what you’re going through.

You are not alone.

16 Replies to “Grieving For Your Diagnosis”

  1. MartinB (@martinbelcher)

    I really identify with this, ive had AS since 19 years old and I’m now 43. I spent the most of my twenties in terrible pain and decreasing mobility and definitely went through the five stages of grief and it wasn’t until I hit rock bottom and got very depressed that I started to fight back and now after two total hip replacements I feel i have accepted my AS and I can move on. Don’t ever give up!

    • Endless Trax

      I personally went through all five stages too, and like you I didn’t get to acceptance until the after I went through a depressive phase. I seemed to almost come to acceptance overnight. It happened very quickly, anger for me was the longest and hardest phase to deal with.

      Just goes to show how differently we all react to grief, and how we all deal with it differently.

  2. Pamela

    This is where I am at after 26 years with being with this monster and 9 with Fibro. I grieve the life I had and grieve all of my future plans. My husband is about to leave me because at mid-life, he doesn’t want to give up any more.

    • Endless Trax

      Thank you for your comment Pamela. I’m sorry your AS & Fibro is effecting your relationship with your husband so much. There are people you can talk to which may be able to help. I’m probably not the best person to talk to, but there is help there if you feel you need it.

      Thank you for your point about grieving for the life you used to have. Feeling like you have lost your life is something that is common amongst chronic illness sufferers. I hope you can find a way to move on soon.

  3. sfdegraff

    Ricky! I didn’t see you at the SAA seminar in Denver 2008. A social worker spent an hour and a half on this topic. My friend Pete said this describes his experience exactly. Me? I felt relief when I was diagnosed. I suppose that means I skipped directly to acceptance.

    • Endless Trax

      That’s because I wasn’t there sfdegraff 😉

      It is a topic which is known about very well. But it also seems to be a topic that is rarely discussed amongst ourselves, and our peers.

      I’m very glad you coped well with your grief.

  4. Tracey

    I guess everyone’s experience is different because we spend varying amounts of time in each of those stages. I also felt a relief at diagnosis like sfdegraff yet felt an anger that diagnosis had taken so long – 15 years in my case – and up to that point the symptoms had completely ruled my life.

    I think outside a cure, early diagnosis is crucial. In my case diagnosis was the turning point which put me in charge. It wasn’t easy but starting with small steps I have spent another 15 years since diagnosis making up for the first fifteen. Through AS I discovered a determination which has helped me achieve life goals. I never thought in a million years I’d be saying that.

    • Endless Trax

      Diagnosis seems to a turning point for most sufferers, whether in a positive way or a negative one. I think every soul who knows anything about AS at all will agree with you that early diagnosis is key. I know the people at NASS and SAA are constantly trying to win that battle.

      Thank you once again Tracey for your comment.

  5. John

    Depression was the worst for me.I lost a lot of weight prior to being diagnosed and was afraid of what i might have.I knew i had a lot of pain and and what could it possibly be.After i was diagnosed,i was more content knowing what i had wasnt destiffnessadly, but also there was no cure and i would get progressively worse.I just kinda now feel all alone with this disease.Most people see me as in good health,but they never see how i feel on the inside.


    • Endless Trax

      Thank you John for sharing.

      You are not alone in how you feel, I have spoken to many people who echo exactly what you have just said. We often talk about AS being an invisible disease because people don’t see your pain, but that also is true for your emotional state.

      I hope you find a way of getting through the depression. There will be more on that topic coming soon hopefully, so maybe that might help you some too?

      Thanks again

  6. jackieat60

    I can identify with all the stages Ricky, and I think we also bounce back and forth to an extent. If you are going through a really bad flare, then you can easily go back to the anger and/or depression. However by being aware of what is happening, and as you say,connection with others who will listen and who actually understand, is a huge help. I often see people commenting that they don’t know how they would have coped without the support they have access to, or cant understand how they coped before they had accessed the support groups.

    Unfortunately the vast majority of us have had to endure such a long time before diagnosis, that when it comes we are simply in such a ‘high’ that there is a name for it, and it’s not ‘all in our head.’ But once the euphoria has passed then the worry, depression etc comes into play, often because despite having an official name, we can take such a long time to get the medication sorted to get the best possible relief.

    The groups on FB to which so many of us now belong, are a great support, but also a freeing up of our feelings as we can vent and moan and get stuff off our chests instead of holding it all in to fester, it also reminds us of how strong we become, and how empathetic to others, which is no bad thing.

    Another great article Ricky

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