How you can help

Neuro-immune disease affect families and friends as well as the sufferer. You too need to learn to adapt to your loved one’s illness – modifying activities, learning to be flexible, and creating new ways of being together. There are many ways you can help:

  • Educate yourself about you’re friend or family member’s illness, and learn how the illness specifically affects them. Ask questions about things you don’t understand, rather than making assumptions. It is incredibly re-assuring to the sufferer to be surrounded by people who are pulling in the same direction – knowing what we need to do, supporting our efforts, taking an interest in our journey, celebrating our successes, and helping us through setbacks.
  • Acknowledge the seriousness of the illness, and demonstrate empathy. Denial and “She’ll be right” type comments are not helpful. Be positive but in a realistic way. Display sensitivity – resilience is low during illness, and many sufferers struggle to cope with unhelpful, insensitive or ignorant comments.
  • Don’t try to ‘fix’ your loved one, or offer unsolicited advice. You are there to be a friend, not a medical advisor. Offer non-judgmental acceptance, and never make a patient feel guilty for their illness, nor imply blame.
  • Understand the losses that come with chronic illness – loss of identity, financial security, hopes and dreams. Allow your loved one time to grieve, and give them time to reach a place of acceptance, and adaptation.
  • Understand the fluctuating nature of these illnesses. Your loved one may seem fine during your time together, but then be very ill for days or weeks afterwards, if they have done too much. Help your loved one minimise relapses and flares by being aware and considerate of their illness-imposed limitations. This may include: limiting your time together, avoiding large, noisy gatherings, or stressful situations, and being careful about wearing strong perfumes, or exposing the sufferer to colds, flu, etc.
  • Isolation is a major problem for many with severe disability. Reassure your loved one of your love and support. Find ways of being together which are within their capabilities. This can be something as simple as a picnic in bed. Get creative. Try also to find some way to include your loved one in important events like birthdays, Christmas, Weddings, etc.
  • Offer practical help – transport, shopping, errands, working bees, making phone calls, relieving the patient’s carer, meal preparation.
  • Buying gifts for those who are severely disabled can seem difficult, especially if their life is greatly limited by the illness. But there are many things that would be greatly appreciated, things such as: prescribed treatments that your loved one struggles to afford, vouchers for practical help around the house, assistive devices, etc
  • Above all, remember that they are still the same person, and that they deserve admiration and respect for the way they are coping with a very difficult life circumstance.