All families dealing with an HLH diagnosis will experience a range of emotions as they begin to process the full spectrum of what their young patient will face. On an individual basis, it should be expected that each family member will have their own personal reaction, as well as an individualized set of ways in which they will process and cope during this time. No one way of dealing with the situation is right or wrong and it should be stressed that everyone’s emotions are perfectly normal, expected, and should be treated in a respectful manner.
To begin to understand what this process will look like, it’s usually best to reference what is called the grief-cycle. This cycle of emotions includes – denial, anger, depression, and fear. These emotions are all perfectly normal for those facing a rare-disease diagnosis due to the tremendous amount of stress involved. It is also important to remember that all individuals will experience “good days and bad days.” Encourage those going through these ups and downs by reminding them that they will find relief with the passing of time.
As a part of the coping process, each member of your family will begin to understand how they best deal with the situation and will thus find their preferred coping method. Some of these methods of coping may include: finding social support; partaking in individual counseling or therapy; becoming educated on the disease; and/or acting as an advocate for the patient.
For those who are looking to social support, it is important to remember that asking for help is okay and that graciously taking any help offered to you is okay also. You will additionally want to connect to your significant other or to another important person in your life by communicating daily. Even if you only have a few minutes to talk, those daily moments will keep help you to stay connected and provide a sense of normalcy to your life.
Individual counseling or therapy is another effective way to communicate your feelings with someone who can support you in working through them. Ask your child’s heath care provider, or other parents, for a recommendation.
Educating yourself about the disease your loved one is fighting will help you to understand the situation they are facing in a whole new way. Education is often a way for individuals to feel like they have more control over a situation. This is because it allows them the chance to know more about what the patient will experience as they undergo treatment for their disease.
Finally, becoming someone’s advocate is a great way to get involved and make a difference. As a part of this process you’ll need to do some research, ask questions, and develop relationships with the medical professionals around you. This type of support is crucial and everyone around you will benefit from your belief in the patient’s full recovery.
If you are a family facing an HLH diagnosis, don’t feel like you are alone. The volunteers at the Matthew and Andrew Akin Foundation want to connect you with the support you need to make informed decisions while fighting this disease. We encourage you to explore the services provided at www.matthewandandrew.org, as well as those provided by the HLH Center of Excellence at Cincinnati Children’s Hospital.