The death of anyone we care about is always very painful. Many bereavements involve at least some difficult thoughts and feelings.

These might include:

• wishing things could have been different
• feelings of guilt or regret
• words left unsaid
• things left undone
• people not behaving as you would have liked (either when someone was dying, or afterwards)

When you lose someone you care about as a result of a rare condition, the feelings involved can be challenging and complex.

You may have been very involved with someone’s day-to-day care, or made changes to your own life in order to be a support to them. When someone dies, it takes time not only to grieve, but to find new routines and ‘ways of doing things’ now that they are no longer here.

There may be all sorts of additional ‘big and small’ changes and losses to process alongside your major loss.

Grief after a bereavement

When someone dies, there is no right or wrong way to feel.

You might find yourself:

• having a ‘mixture’ of thoughts and feelings
• different feelings at different times
• feeling ‘numb’ – which is your body’s way of protecting you emotionally from the pain
• feeling quite overwhelmed

How you feel, and the thoughts you have, will also be related to the type of relationship itself. Grief can feel a little different depending on whether you have lost a parent, partner, child, sibling or friend.

Experiencing the death of someone from a rare condition that is inherited and that you share will bring up a lot of additional thoughts and feelings.

As this is a complicating factor to your loss, allowing yourself the possibility of talking it through with someone like a counsellor at some point can be very helpful.

Secondary loss

This is a term used to describe and recognise the other losses and changes that can occur around the time that someone dies.

There can be a lot of additional change and loss that happens, particularly if you have been providing a lot of daily care and support.

Changes can sometimes feel very abrupt. Being aware of this possibility in advance can help you feel more prepared. However, it can still feel a shock.

Other changes and losses may happen more gradually over time.

Examples include the loss of:

• familiar routines
• the health/social care professionals that you have got to know
• equipment or aids
• adaptations to your home
• financial support or benefits
• condition-specific support networks (if you are unsure that you still ‘belong’ in the same way)

Other types of secondary loss might become more apparent to you over time as you become more aware of the continuing ‘absence’ of the person who used to be with you.

Acknowledging these changes and losses as all part of the grieving process can help you manage any difficult feelings that might be involved.

I was in shock that S died at the weekend, and by Friday they had taken away the hoist, bed, chair, everything. I know other people need it, but still. The house felt so empty, not just because he wasn’t there.

It will take time to re-orientate yourself emotionally, as well as practically to new routines and daily life. This will not happen ‘overnight’. Feeling like you are on a bit of an emotional ‘rollercoaster’ is entirely normal, so be patient with yourself.

Losing a child 

The loss of your child is always incredibly painful.   

When your child dies, and however this happens, it is not unusual to be left with many complex thoughts, questions and feelings. Even if their death was prepared for or expected, it can still feel very difficult to accept. 

Many of the questions and thoughts you have about what you have been through, or how this has happened as part of your life, will not have straightforward answers. It will need time for you as an individual and/or couple to work through them, and come to terms with over time. This process cannot be rushed, but can be helped by talking to people you trust. This might include professionals, family and friends, and religious or spiritual leaders.

What helps with the grief of losing your child? 

Manage any guilty feelings carefully. Remember that in most situations, even if things were not done perfectly, it is likely that everyone was doing the best that they could – including you.

Write down any specific questions or concerns. If you have questions that you want to ask healthcare professionals, or need to talk through some things that happened around your child’s death or care generally, write them down for a time when you feel ready to ask them. 

Allow time to find new meaning to life and priorities. It will take time to find new routines, and ways of living with your loss. 

Honour their legacy. Some parents find it helpful to honour the memory of their child through becoming involved with fund-raising, volunteering, or supporting causes and interests that helped. This is something you might find helpful to consider at some point too.  

Find ways to manage birthdays or significant dates. You and your family might want to set time aside to remember and honour your child’s memory around these times.  

Talking to others who have been through something similar can be very helpful. Some rare condition organisations have bereavement groups for parents, or other family members. You can also contact Child Bereavement UK.

Loss during pregnancy or soon after birth

Some babies do not develop as expected during pregnancy. This may be a result of a genetic condition or complications arising as a result of your own condition. Sometimes this may result in a miscarriage, or the difficult decision to have a termination.

In other cases it may be the case that your child does not survive for long after their birth. The resulting grief, and impact on future family planning, can be very complicated.

The loss of a baby or potential life, is exceptionally painful, however it came about. Reaching out to a specialist organisation, and perhaps others who have been through this too can be very helpful.

ARC provide counselling and support for parents who have been through a medical termination.

SANDS provide support for parents for parents who lose a baby before, during, or shortly after birth

Loss to suicide

The reasons why someone may take their own life are often very complex. Losing someone to suicide can bring up lots of difficult thoughts and feelings in those left behind. These can include guilt, and sometimes anger too.

It’s important to remember that whatever the circumstances, losing someone to suicide is not your fault.

It is not known how many people impacted by a rare condition take their own lives. We do know that the risk of suicide is higher in some associated groups such as unpaid carers, or those with some chronic health conditions involving pain.

MIND provide a very helpful leaflet on coping with a loss to suicide.

If you hear of, or witness, the suicide of someone you did not know, this can also bring up a lot of difficult feelings. First Hand is an organisation that can provide support.

If you yourself have thoughts of harming yourself, or ending your own life then do reach out. Sometimes these thoughts occur as part of grieving and wanting to be with (or see) a loved one again. There are people and organisations who can help.

Looking after yourself when grieving

Grieving does not happen in a ‘neat straight line’

This is true not just following a bereavement, but when you are grieving with the loss of parts of your life or identity that have changed too. Some days will be harder than others, and that ‘rollercoaster’ of emotions can be tiring.

Depending on your culture and family background, there may be some ways of grieving that are more acceptable, or expected, than others.

Not everyone grieves in the same way. Some grief may be quite ‘public’ and experienced with other people around. At other times you may experience your grief more privately, or alone.

Managing anger and sadness

Feeling angry and irritable is a normal part of grieving. Being aware of this can help you feel more in control if you feel on a ‘short-fuse’ or upset by things that would not usually bother you so much.

Anger is often a big, loud feeling. As such, it can sometimes be easier to be in touch with than quieter, smaller feelings such as sadness. When you are feeling angry, it can help to ask yourself if there are also any feelings like this underneath?

Being tearful

You might feel tearful a lot of the time, or be ‘surprised by’ tears at different moments. If you are not usually a very emotional person, being (or feeling tearful) can leave you feeling quite vulnerable.

If this is the case, try to reassure yourself that being tearful is a natural part of grieving for many people. Others will understand.

You might also not feel tearful. Sometimes, feelings take time to emerge, or emerge differently. Do not feel under pressure to cry if it does not feel natural for you.

Be patient with yourself

We do not so much ‘get over’ grief, but learn to ‘live with’ it.

You may feel less robust, or more tired for some time. This is because the grieving process is difficult emotional work, and will even be happening ‘in the background’ when you are not aware of it. Try to reduce other demands on your time and energy as you need to.

Manage ‘first year anniversaries’ carefully

The first anniversary after any loss or significant event can be a very emotionally charged time.

These might include:

• a birthday
• wedding anniversary
• death anniversary
• certain difficult, or significant, news

When might you need to seek more help?

Any type of bereavement can bring up painful thoughts and feelings as part of grieving.

Losing someone to a rare condition can involve additional difficult thoughts and feelings as part of the grieving process. These will depend in part on how and when someone died, and whether or not you or others in your family share the condition too.

If the way in which someone died was particularly traumatic or sudden, this can also be another difficult aspect to cope with. If this has happened to you, having some specialist and professional help you process difficult feelings or experience that you have been left with, will be important.

The difference between ‘ordinary’ and ‘prolonged’ grief is not straightforward.

However, if you are still experiencing any of the below after several months and your feelings do not seem to be easing with time, talking to a counsellor may be helpful.

• flashbacks to someone’s death, or aspects of their dying
• fears about your own death or dying
• avoiding or finding it hard to go to certain places associated with them
• intense yearning for the person you have not lost, and that has not eased at all
• not wanting to ‘carry on’
• feelings the future is meaningless
• having lost your capacity for joy or hope in the future

It is now much more commonly acknowledged that grieving is a complex and painful experience. You can consider asking for support from:

• a national bereavement organisations such as those below
• a local community bereavement organisations via your library, or internet search
• your rare condition organisation
• your GP
• your hospice, if you had care from them
• a religious or spiritual community leader