There can be many emotional implications that result from daily management of such a complex and rare disease that are likely to affect you as a patient or caregiver—however, it is also important to consider other family members, relationships, and elements of family life that can be impacted by living with a Hunter syndrome diagnosis, and how you can work together to overcome these.
It can be challenging to tell those closest to you about Hunter syndrome. At least initially, your family and friends will likely be unfamiliar with the disease and therefore unsure on exactly what type of help you need from them and how best to support you both practically and emotionally. This is further complicated by the fact that no two families will be affected in exactly the same way; this means it is especially important to be as truthful as possible about your personal experience and what kind of help you’d appreciate from those closest to you.
Spreading awareness about Hunter syndrome, its symptoms, and how it affects your family personally is therefore the first key step for your loved ones to learn how best to support you. However, there are also support groups available that can be a great resource to lean on. Not only could it be valuable to speak to those who have had similar experiences to you, but it can also be a great opportunity to learn from those with a more in-depth knowledge of Hunter syndrome.
As a caregiver, some of the emotional topics that may affect you can include:
As a caregiver to a child with complex needs, it may become normal for you to start putting yourself last and forgetting to take time for the things you enjoy. Setting aside time for yourself, even if it’s only an hour at a time, can help you to re-center and manage your emotions. This time to relax can help to make everything else in your life seem more manageable. Talk to your loved ones and see if they may be able to look after your child for a few hours or an afternoon to allow yourself some time for self-care. Scheduling in some time for yourself on a regular basis is ideal, but even a little helps!
Many people, even those closest to you and who know your child, may not be fully aware of Hunter syndrome and the range of effects it can have. The more awareness your friends and family have about Hunter syndrome, the more they will be able to effectively help you. Directing those closest to you to available resources on Hunter syndrome can help them to better understand what you’re going through and how to help. As experiences with Hunter syndrome can vary greatly, you could even try creating your own personalized description, detailing key symptoms and aspects of the condition that specifically impact your child.
One very challenging aspect of family life that you may not immediately consider when receiving a Hunter syndrome diagnosis is the reaction of non-affected siblings. As a child with Hunter syndrome has more complex needs, your other children may feel they are overlooked, or not getting the level of attention they desire. For this and other reasons, your other children may become resentful of their affected sibling, which can be incredibly hard to deal with as a parent or caregiver.
Creating open lines of communication with your other children can help you to understand their perspective on the situation. This, in turn, can help you to work out how to cater for their needs and balance these with the needs of your affected child. Tamara Cullere's insightful children's book, Emotions of a Super Sibling, could be a helpful resource for facilitating this type of communication. The book explores the emotions that children may experience while supporting their sibling's journey with a rare disease, providing reassurance that all emotions are normal and valid.
As with a lot of visible disabilities and conditions, one of the hardest things to deal with as a patient or caregiver is the behavior of strangers. Unlike with your close friends and family, it may not be as worthwhile trying to educate people you don’t know about Hunter syndrome. However, by staying strong and continuing to raise awareness amongst those close to you and in your community about this rare disease, your family and others in a similar situation could ultimately benefit.