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Grief and Loss in Huntington’s Disease:

When grief and loss are part of the journey, not just the end.

What are grief and loss? 

Grief is a natural response to loss. It is usually acknowledged in the loss of a loved one, but with HD, grief and loss is a process that we encounter through every step and stage of the illness. Grief and loss can be experienced from the time of genetic testing, through to the onset of symptoms, and throughout the points of change that the disease causes. 

There are ongoing changes that occur when living with HD, and whilst some we adapt to easily and without even noticing a change, others can be confronting and stop us in our tracks. Sometimes, however, things might have changed and due to the demands of daily life we do not allow ourselves time to even recognise the change, or it is too painful to see and so we try and push through it. This can often result in behaviours and feelings that are associated with grief, such as our emotions, thoughts and behaviour, beliefs, physical health, our sense of self and who we are, as well as our relationships. It can leave us feeling sad, angry, anxious, shocked, regretful, relieved, overwhelmed, isolated, irritable, or numb. 

Grief is expressed in many ways; there is no “right” or “wrong” way to grieve, and no set pattern. Everyone experiences grief differently. Some people may grieve for weeks and months, while others may describe their grief lasting for years.  

Through the process of grief, we begin to create new experiences and habits that work around our loss. This does not mean that we “get over it” or forget. Grief takes time to work through. We adjust to the changes as we work towards living with the loss. 

While everyone finds their own way to grieve it is important to have the support of friends and family or someone else, and to talk about your loss when you need to. Grief also can raise itself well after the final loss of a loved one, particularly for carers who are often so overwhelmed and exhausted. This is not uncommon where a loved one has been “gone” or “lost” for some time before their death. Grief comes and goes. It is not one experience; it is not one single event. It is, however, a part of everyone’s life and for those living with HD in their family it is part of the journey. 

Many people do not know what to say or do when trying to comfort someone who is grieving. However, often it is the simple offer of love and support that is the most important. If people say or do the “wrong” thing, try and be patient and understand that this is usually because they don’t know the “right” thing to say or do. Suggestions from you of how they might help can be a useful strategy.  

So, what can you do?

  • Ask for help. Talk to friends and family about how you are feeling or consider seeking professional support. 
  • Take care of your physical health. Grieving can be exhausting, and it is important to eat a healthy diet, exercise and sleep. 
  • Manage other stresses and try to lighten your load. Relaxation and gentle exercise can be helpful.
  • Try to do things you enjoy, even though you may feel “guilty” for having a laugh or feeling happy, we are complex and we can enjoy life whilst we are grieving, it does not make our feelings of loss any less real or less meaningful.

Grief and loss is something that also affects children. You can learn more about it here: