How to Support a Family Facing a Life-Changing Medical Diagnosis
When spinal muscular atrophy entered our family’s lives in 2009, most of our friends and family had never heard of the disease or even knew anyone with a disability. As we struggled to understand what this diagnosis meant for our son and our family, our loved ones struggled with how to help us through this initial difficult time. I was in no position back then to clearly articulate what I needed, and consequently, I often felt alone. In hindsight, I can see what I needed most and how the kind actions of those few people who did “get it” made a world of difference to our family in those early days. If someone you know just received a life-changing medical diagnosis for herself or her child, here are a few ideas for welcome help and support you can offer.
First, just quietly listen. Don’t judge, don’t offer advice and don’t try to relate to how they’re feeling. Don’t. Say. Anything. And if possible, try not to cry. Listen patiently and be strong for them. People dealing with dire medical predictions are going through a wild range of emotions which are perfectly normal. Their feelings may seem extreme to you, but I can say from experience they are common. You may recognize the seven stages of grief even if the parents themselves do not. If you can provide a safe ear to confide in, you needn’t do anything else. If you are concerned, suggest professional counseling but don’t offer clichés or share stories to “help put their experiences in perspective.”
After my son’s diagnosis, many people I talked to would get visibly upset when I explained the reality of his condition. I felt the need to be strong for them, and bottled up my own feelings of sadness. I started helping others deal with the trauma rather than relying on them to help me. Needless to say, I would eventually break down, usually to my husband but sometimes to a couple of my closest friends. Those friends never said “God doesn’t give you more than you can handle” or “My child was hospitalized for an allergic reaction once so I understand what you’re going through.” Some of the kindest and most well-meaning people said things that hurt me the deepest. Unless you have experience with the exact diagnosis your loved one is facing, less is definitely more.
Second, offer help in concrete ways, but don’t push charity on someone. Learning to humbly accept charity is part of living with a serious medical condition. It can be very difficult for hard-working, self-sufficient people to accept money for hospital bills, frozen meals and the like. If you ask them how you can be of service, they will most likely refuse and say they’re fine. Learn to offer specific gifts. Is there an upcoming appointment? Offer childcare or gas money if they need to travel. If the child needs to be hospitalized, organize meals or offer to sit with the child for a bit so Mom and Dad can take a break. See if there are routine medical supplies not covered by insurance that you can help purchase on a regular basis, or help them set up a wish list online for these items. If they need a major medical item or home renovations, offer to organize a fundraiser. However, if they say no, respect that. Let them know you’re willing to help in any capacity. Keep offering and eventually they may ask or take you up on your offer. But don’t offer if you’re not willing to step up. If you say you’ll organize a beef and beer, you’d better damn well hold up your end of the bargain. Flaking out will make it that much harder for the family to ask for help in the future.
Understand that even after the shock of the diagnosis goes away and the family settles into their new normal, there will be tough times. Your friend may seem fine, and things may look great on the outside, but the hardship of the day-to-day is there. Your friend probably doesn’t want to be considered a saint or someone who is “doing it all”. He or she is probably still struggling in many ways. This is where continued listening is so important. It is an ongoing juggling act to parent a child with a disability. Things never stay the same for long. Never assume your friend has it together. Check in occasionally with a judgment-free ear.
You might notice the strain of the diagnosis taking its toll on your loved one’s marriage. Learning to care for oneself, or a child with complex medical needs can suck up all your time. It is very easy to put all your time and energy into the diagnosis so that your spouse gets completely neglected or only viewed as a fellow caretaker. Friends, you can help by offering to babysit so Mom and Dad can get a night out, offer transportation if driving is difficult, maybe childcare, or if that’s not possible, surprise them with a gift card for a restaurant and some cash so they can find medically suitable help and make time for their relationship.
If the family is religious, pray with them. (And if they’re not and you are, you can still pray, but understand they might not feel as grateful for your prayers as you’d like them to.) Religious belief can offer comfort to some families, but others may go through a spiritual struggle when faced with a serious medical diagnosis. Offer support, but understand it’s probably not an appropriate time to evangelize.
Every family faced with a life-changing medical diagnosis needs a supportive community. By putting the family’s needs first and your own feelings second, you will go a long way in assisting them on their journey.