Dedicated group for those supporting people with macular disease launches

A new dedicated support group for caregivers and those supporting people living with macular disease will launch this spring, recognising their often-overlooked needs.

A diagnosis of macular disease can have a huge impact on those receiving with the condition, but the Macular Society’s head of counselling, Suzanne Roberts, said it can also impact those around them.

To recognise this impact the Macular Society’s Counselling Service has set up a new service to support family members or friends supporting those with the condition. The new online group will provide a safe and confidential space to speak with others in a similar situation.

Speaking about the new service, Suzanne said: “We speak to over 600 people each year who have macular disease. We hear about the impact a diagnosis can have on relationships and family life, yet it isn’t very often that we hear from anyone other than the person with the diagnosis. But we know they are out there.”

She added: “Those supporting someone with macular disease, do tend to overlook some of their own needs, not seeing themselves as a priority.

“Yet much of what is felt by the person with the condition, such as fear of the future, feelings of helplessness and frustration are often felt by others too. Dynamics change within households and although physical and emotional adaptations can help, life can still be very difficult at times.”

Suzanne said by offering a safe, confidential space to speak with others may help people to feel less alone and better equipped to cope with whatever life with macular disease brings.

She said: “It could be that the group helps to normalise some of what you are feeling and give you a bit of a boost.” “You do not have to be an official carer, or even consider yourself a carer to join the group, if you are affected by somebody else who has macular disease and would like support then the group may be of benefit to you.”

The online group will run for an initial 6 weeks and will be facilitated by a trained counsellor. Topics covered will include; self-care, personal identity, managing feelings associated with frustration, fears around the unknown, the role of the carer, acceptance, adaptation and change.

To enquire about the group or a one-off telephone session, please contact our helpline on 0300 3030 111 or email help@macularsociety.org