No two people experience MND the same. What affects one person may not affect another and so we strive to meet each person’s individual and unique needs. What affects one person in a family affects everyone in that family. Like many conditions, receiving a diagnosis of Motor Neurone Disease not only impacts on your life but on the lives of everyone around you. It takes time to adjust to a diagnosis of MND; time to absorb the implications of it for you and everyone you love. It takes time to learn about it, to talk to people about it, to help your family adjust to it; to help your friends understand it. You may want to tell people about the practical ways in which it will change your relationship or you may not want to talk about it at all. You may want to keep it from them for as long as you can.
The diagnosis of MND inevitably means the beginning of a new journey – one that in all likelihood you did not expect to be making but one that, in fact, you have already begun.
‘Normal’ reactions to learning that you or someone close to you has a serious illness can include:
- Fear for the future
- Disbelief at the diagnosis
- Anxiety for loved ones and friends
- Grief for the future you expected to have
- Anger at the medical profession or family and friends
- Isolation because you feel ‘different’ from those around you
- Intense sadness
- Relief that you finally know what is happening to you
Some or all of these feelings may be overwhelming for a while and you need to work through them at your own pace. You may also find that you need to get the reality of the situation straight in your own mind first before turning to people for support. Others may find it easier to involve friends and family immediately. Gradually, though, most people will begin to ‘rethink’ and review their life plans.
Feelings and Concerns
It can sometimes be difficult to talk openly to those you are closest to without feeling you are adding to their emotional burden. You may find it helps to talk through any feelings or worries with someone outside the immediate family. Your GP or a counsellor or an understanding listener could all be useful support. Social workers attached to your hospital are also available to help.
“Through the amazing generosity of the IMNDA I have been able to receive all the aids and appliances that I have required to live a normal life”.
Sharing the diagnosis with others
Almost certainly, you will have undergone a variety of tests before the diagnosis is made. You may have involved those closest to you in every stage, or it may simply not have been possible for someone to be with you at every doctor’s appointment or hospital visit. Either way, those closest to you will be concerned and it is important that at some point they know what is going on.
It can be very helpful to make an appointment to see your consultant neurologist together so that your partner or close friends or family can ask their own questions and settle their own concerns as well as sharing the experience with you. You can also reach out and seek guidance from our MND nurses, to arrange a call or home visit please contact our Services Team on email@example.com or Freephone 1800403403.
It does not follow that, just because someone is close to you, that they will experience the same feelings as you at the same time. It may be that you are feeling anxious and distressed; your loved one is not and vice versa. Open, honest communication is vital to avoid possible friction or misunderstanding. Never make assumptions about how others are feeling. For more information on this, please see our Living with MND Information Leaflet.
If you need further support, please speak with your IMNDA Nurse as we fund professional counselling.