When Family Doesn't Understand

by Christina Medvescek

Bible stories, fairy tales, legends and myths are full of accounts of families. Many of them are quite horrible. Betrayal, abandonment, deception and outright acts of hostility are common themes. Think of Cain and Abel, or Hansel and Gretel, or King Arthur, or that whole big quarrelsome family of Greek gods.

Yet — despite these warnings — when the chips are down, we expect our extended family (parents, adult siblings, aunts, uncles and cousins) to be there for us.

Amazingly, wonderfully, sometimes they are. With loving words and deeds, they help us bear up under the weight of disaster. They keep us going, body and soul. They form a tight-knit web of support that won't let us fall no matter how bad things get.

But sometimes, family members aren't there for us. Where we hope to find support, instead we find empty phrases, or criticism, or denial, or worse, nothing at all. Instead of helping us cope, their responses make things harder. Comments and actions that would bounce off coming from a stranger cut to the heart because the source is a family member.

"It's not that my family is harsh," says the mother of a child who uses a wheelchair. "It's just that the stupid things they say are worse because they're family and I would like to think they know better."

How do people coping with a neuromuscular disease in the immediate family handle having poor support from their extended families? Why do some relatives act like this? Can anything be done to correct the problem?

Here's a look at the situation through the experiences of MDA support group leaders and families (some of whom have asked to remain anonymous in this article).

WHAT'S THE PROBLEM?

There are many unhelpful ways in which extended families may respond to neuromuscular disease, including:

Not everyone can cope with painful news, especially when the situation can't be fixed or controlled. In response, some people basically put their hands over their ears.

For example, when the doctor diagnosed Duchenne muscular dystrophy (DMD) in her son Raymond, Anneliese Villegas of Ashland, Ore., called her mother with the bad news. Even now, eight years later, she remembers the conversation well.

"Mom said, 'Oh. That's too bad. Well, I really need to go right now, because I have a hair appointment.'

"We couldn't talk about it with her. She just wanted to hear 'we're fine.' That was hard. I never felt like I could tell them when I had a bad day, and I never could share some of the black humor with them, which, you know, helps you cope."

Pat Schulz of Roanoke, Va., still is unable to talk about her myotubular myopathy with her father, even though it's been 10 years since she received the diagnosis.

"Anytime I bring up anything about the MTM, my dad will change the subject. It hurts knowing that my father, being my only living parent, will not talk about the disease with me. I have shed many tears over this."

Sometimes a relative will "talk" about it, but not in a meaningful way. Julie Smith (not her real name) has mitochondrial myopathy, along with three of her five children. Whenever she tried to explain the medical situation to her in-laws, her father-in-law would interrupt with a cheery, "Yes, but it's going to be OK!"

Notes Cheryl Stigall, a social worker and MDA support group leader in San Diego, "Some people cope by minimizing problems and they want you to do that, too, because that's what works for them."

Still other relatives may be willing to "talk the talk" but not to "walk the walk."

Starla Collins of San Diego has two sons with DMD, and many family members live nearby. She says she gets wonderful verbal support but no action.

"I know their hearts are there, that they feel for the boys and me — but I wish they would just act on it and I wouldn't have to ask. When it comes to family, it's hard for me to ask. I wish they would just say, 'Hey, Starla, you need a break.' Why do I have to ask?"

There's a history of DMD in Renee Willis' family, so when her son received his diagnosis, she thought her family would be sensitive to her needs. It came as a shock when some relatives "told me that I should not expect help or sympathy from the family in dealing with my son's disease, because I should have known better."

This attitude had a big impact on Willis, of Westminster, Colo. "It has caused me to be overly independent and not ask for or accept help that is offered to me. I don't want people to think that I have to lean on them because I can't deal with these problems that arise with my son's disease."

Criticism can be another form of denial. A grandparent may insist that a child with weak muscles just needs to "try harder" or that using a wheelchair is "giving in." A parent of an adult who receives a neuromuscular disease diagnosis may accuse the affected person of being lazy or a hypochondriac.

Criticism also can masquerade as advice or encouragement. Relatives may disparage a doctor's prescription or advocate miracle cures. When a 4-year-old with DMD still wasn't potty-trained, his aunt commented, "Just give him to me for a week and I'll get him trained!" Instead of being supportive, these statements send the implied message, "You're not handling this right."

"One big problem is how grandparents treat the siblings versus the child with special needs," says Becky Speulda, a social worker and MDA family support group leader in Portland, Ore. "It's a huge issue."

Too much or too little seems to be a problem. Some grandparents lavish attention and toys on the child with muscular dystrophy, to the exclusion — and distress — of the brothers and sisters. Grandparents also may object to (and sabotage) parents' attempts to discipline a child with MD.

"Parents want their child to be a child, not a 'disease,' especially when they're setting rules and limits," says Laura Frobel, a social worker and MDA support group leader in Warwick, R.I. "But grandparents aren't always supporting those rules because they want to keep the sick child 'happy.' Grandparents say it's because the child has a disease, but really it is a way of them not dealing with it."

At the opposite extreme, relatives may virtually ignore the affected child, planning outings in which he or she can't participate due to physical limitations. Or they give the children gifts that are too young for them, assuming that since their bodies have a disability, so do their minds.

This category is broad and filled to the brim. Some relatives don't understand the situation, and don't think about the effects of what they say and do.

Kelli Brunk, a social worker and MDA support group leader in Miami, says a relative's or friend's insensitivity to a family's needs often results in feelings of isolation.

"I'll hear stories all the time, like: 'We went on a vacation with our friends and the condo was two stories high, and our friends said they wanted the first floor.' Or, 'We went to a barbecue and it started to rain, and everybody ran to their cars and there we were struggling in the rain to load up our sons.'"

Family members may think they're being kind without realizing how they're coming across.

Sherry Griep, of Beloit, Wis., has a 2-year-old with DMD. "If they want to know how he is doing, I am never asked. Someone else in the family is asked. It's like they're afraid I might get emotional if it is said to me. It's like I'm not there. I want people to know that I am not invisible because my son was diagnosed with this, and neither is he."

The parents of a boy with spinal muscular atrophy (SMA) call these small insensitivities "tiresome and discouraging." At family get-togethers, they'll be assured that the home is wheelchair-accessible, only to arrive and find that it's not.

"It would be nice if people would see what's coming up so we don't always have to ask, 'Could you open up the second part of the French doors so the chair can get through?'" the parents lament.

Parents sometimes find their efforts to protect medically fragile children can be misinterpreted.

"A cold can easily put my son in the hospital," one father says. "People don't take it seriously because they just don't realize. At family gatherings, it has created some tension between my wife and other moms. They think of it as an overreaction when they see us trying to wipe down all the toys or keep away from the kids who are coughing."

WHY DO THEY ACT THIS WAY?

People may assume that family members behave insensitively because they don't care.

"But it's very rare that family members are too self-absorbed to care," Becky Speulda says. "Usually there are other things that get in the way."

Family dynamics is first on the list. All families have emotional baggage —and stress makes it worse.

Cheryl Stigall advises families to take a hard look at how their relatives offered support in the past. The patterns of the relationship are the best predictors of the future. If you had communication difficulties or lack of family support before the diagnosis, you'll be facing the same thing after it.

On the plus side, a family with strong relationships before the diagnosis usually will come through in the end. Laura Frobel notes, "If it was a good relationship to begin with, this will stress it but you can get through it." Time, patience and education are the keys, she says.

Grief often underlies many seemingly heartless acts, especially by grandparents. In the five stages of grief identified by Elisabeth Kubler-Ross, the first is denial and isolation.

"Grandparents worry about their grandchild and their child, the parent. They are carrying their own grief. They are going through a process, too. Sometimes they are overwhelmed and don't know what to do, so they don't do anything," Speulda says. "They are protecting themselves."

If the grandparents only see the child occasionally, they can get stuck in their grief and not move past the denial stage. Explains Frobel, "It's easier on a day-to-day basis to see the normality of the child, not just the disease."

Strong negative emotions like grief and helplessness aren't comfortable. Inappropriate or insensitive reactions often are a relative's way of trying to ease his or her own discomfort, Kelli Brunk says.

"When they avoid the problem, they are trying to distance themselves from emotional pain. When they get overinvolved and critical, they are trying to deny the existence of a disease process that is greater than they are. They can't control it so they try to control the way the patient is taken care of."

Guilt is another uncomfortable emotion that can come into play. Neuromuscular diseases usually are genetic and, although the gene flaw can arise spontaneously, relatives subconsciously may feel responsible. Pat Schulz, whose father refuses to discuss her MTM with her, says, "It took years to get my dad to even have a blood test to determine which side of the family had a history of the disease."

Frobel comments, "You sometimes hear people deny that the problem exists by saying, 'No one else in our family has it, so why would you have it?'"

Uncertainty is another factor. Many people don't know how to react to disability or serious illness until they've gone through it themselves. Schulz says, "People are afraid of the unknown, and disability scares them."

Relatives who don't see the affected person very often may become fixed on the disease and fail to see the person underneath. Lack of education about the disease and the way it progresses also makes it difficult for relatives to respond naturally, making interactions awkward.

Some people just need something concrete to do.

"People who like to fix things often have a hard time dealing with an incurable disease like DMD," says Anneliese Villegas, whose mother hurried off to a hair appointment upon hearing of her grandson's diagnosis. Eight years later, her mother is starting to come around. When the boy got a power chair this year, Villegas' parents paid to have a ramp built into the house.

"Before, they didn't know how to be helpful," she says. "Now they feel more empowered to help. It's opened up our conversation a little more."

Stereotypes and cultural assumptions also play a role.

The Americans with Disabilities Act may have outlawed discrimination but it can't touch what's in people's hearts and minds. Old-fashioned or culturally influenced attitudes toward disability die hard. In her culturally diverse support groups, Stigall occasionally hears of mothers who are blamed by their families for their children's diseases and fathers who back out of parenthood once it's clear their child isn't "perfect."

Similarly, grandparents who grew up when people with disabilities were pitied and spoken of in whispers may find it too painful to acknowledge that their grandchild is — in the language of yesterday — "a cripple."

WHAT CAN YOU DO?

Families and counselors agree that people aren't helpless against assaults on their spirit, but they must be willing to commit energy to creating a change. Some tried-and-true solutions include:

Set clear boundaries, say what you need and what you expect. The first step in doing this is becoming clear in your own mind about what you want.

"You can't always get what you want," says Stigall philosophically. "But if you can't express exactly what you want, you are sure to be disappointed."

Speulda recommends working out the actual words you want to say and practicing in advance. "I need…" "It would help me if you would…"

You'll get better results if you use "I" language, which focuses on what you want and need, rather than "you" language, which points the finger of blame. A relative is more likely to respond positively to the statement, "I just need you to listen to me and understand what I'm going through," than to, "You never listen to me, you're always changing the subject."

Starla Collins, who has two sons with DMD, realizes she needs to communicate better. Collins admits she's more comfortable giving than receiving and that she has turned down offers of help in the past. But as she sees her boys' needs becoming greater, she knows she needs to be more proactive. She plans to start teaching family members how to help with the boys' physical care.

"Maybe it's me. Maybe I'm not asking enough," she muses. "I've felt like I didn't want to put anybody out. I'm always like, 'no, no, it's OK, I'll do it…' I know the support is there, but I need to start asking."

Of course, being a better communicator may not solve the problem. Sometimes you may need to enlist the help of a trained counselor or ask a neutral third party to sit in on the conversation. Or it may be more comfortable to write a letter than to speak in person.

At worst, clear communication won't hurt the situation — and it may help.

The more people know, the more likely they are to meet your needs. Some education involves telling people what you want. If you can't say it, post articles about helpful behaviors (such as this article).

Other education involves teaching people about the disease and how it manifests itself. Give family members books, MDA pamphlets and information obtained online. Invite selected family members to come to an MDA clinic appointment, which not only educates but helps them feel part of the process.

Educate relatives about the attitude you're taking toward your child or your disease. If you choose to be upbeat and focus on the positive, let them know and ask them to do the same. If grandparents are interfering with discipline, teach them that you see your child as a child first — not a disease first — with the same needs as an unaffected child.

Finally, educate people about how to act around someone with a disability, by helping them get to know you or the child better. Collins has initiated monthly family get-togethers in order to help her family become more comfortable with and knowledgeable about her boys. Al Freedman, whose son is severely affected by SMA, sometimes invites a relative to take a walk at family gatherings, so they can talk about his son's condition, abilities and personality and discuss any questions.

Don't waste precious emotional energy trying to straighten out every clueless relative. Practice what to say when hearing unwanted advice, criticism or insensitive comments: "Thank you for your concern"; "I'll keep that in mind"; "I appreciate that you care. We have decided that this is the best way to handle the situation."

Try to focus on the person's intention, rather than the words. If you have the energy to educate them, or if they're very important to you, then go for it, Speulda advises. But don't feel as if you have to fight every battle.

How to Be a Super Support to Someone Coping With Neuromuscular Disease Listen without judging or trying to "fix it." This is what most people need more than anything else. Acknowledge their grief, anger, fear and despair. Don't try to make yourself feel better by minimizing their pain with platitudes, diversions or rationalizations. Don't tell them they're in some way "special" because this is happening to them. Offer encouragement and empathy. (Sympathy points the finger of pity as the person walks by. Empathy walks alongside the person, sharing briefly in their journey.) Be realistic but supportive: "I know I can't take the hurt away, but I wish I could." Give hope, which doesn't always have to mean a cure. It can also mean a quality of life. "There will be hard times and tears and lots of fears, but the love and joy also will be intense. I will be there for you." Above all, be available — invite them out for coffee or call just to say hello. Educate yourself. Find out about the condition. Learn about special equipment or techniques. Ask questions if you don't understand. The more you know, the bigger support you'll be. Actions speak louder than words. Instead of vague offers ("Let me know if you need anything"), notice what's needed and pitch in. One of the greatest gifts you can give a parent is child care so they can get a break. This is also one of the hardest services for parents to request. See the person, not the disease. Treat affected children the same way you'd treat unaffected children. Honestly compliment a person's skills and attributes, rather than focusing on deficits. At the same time, be aware when special accommodations are needed due to physical limitations. Include people. Find ways to support yourself. You may be grieving or having difficulty adapting to the diagnosis. Rather than withdrawing, find positive ways to cope with your feelings. You'll feel better, and you'll be a better support.

Your family may never become the support system you want, no matter what you do or say. "Don't expect from somebody what they really can't give you," Villegas advises. This attitude can be emotionally liberating.

Above all, don't blame yourself for your family's lack of support, Brunk emphasizes. "People on the receiving end of denying or controlling behavior often feel incompetence or guilt or shame. But you have to think about it, not just react emotionally. Ask yourself, Where does this behavior come from? Whose problem is it really? What are they trying to accomplish with this attitude or behavior?"

If you can't let go of your expectations no matter what you do, discuss your feelings with a counselor. "I often hear people repeat, 'I'm so angry, I'm so angry, I'm so angry,'" Brunk says. "It's time to stop and decide not to spend energy on this person anymore. You need to move on and find someone who is not so toxic to you."

For many people, the best support comes not from family but from friends. For one thing, friends often aren't as emotionally connected to the situation as family. For another, family is kind of a random assignment of people, whereas you and your friends choose each other.

"It's not a failure if your family isn't your biggest support," Speulda says. "In fact, that's often the way it works out."

Minimize contact with people who bring you down, Freedman advises. "Maximize time with family members who respect and support you and your child."

Renee Willis, whose relatives chastised her for having a child when DMD runs in the family, chooses to spend time with friends and family "that I trust and who don't look at me differently because of what I'm going through."

Anneliese Villegas is grateful for good friends who empathize without making it "a pity party." These friends acknowledge that they don't really know what she's going through, but they're there for her nonetheless.

Besides friends, support can be found in a church community, and through support groups of other people in similar circumstances. If an MDA support group isn't available in your area, you may find help in an MDA chat room (www.mda.org/chat) or through a pen pal (see "MDA Mailbag" in every issue of Quest). Pat Schulz uses e-mail to vent to her best friend and has put together a Web site about her disease as a way to educate and "get my mind off things."

FOCUS ON THE POSITIVE

You can't always eliminate negative people from your life — and maybe you shouldn't.

Given time, many people adjust and their wonderfulness emerges. It may take weeks, months or years before an extended family member "gets it" and lovingly offers what you've been wanting for years. Laura Frobel recommends that you accept that they'll offer what they can when they can, and not before.

In the meantime, focus on positive aspects of the relationship, while taking steps to insulate yourself from the negative.

Adds Sherry Griep, "To those people who show support, I just want to say thank you. It means a lot."

Reaching Out to Family and Friends: One Family's Story by Albert Freedman The Freedmans: Cara, Anne, Jack and Al A few weeks after our 6-month-old baby, Jack, received a diagnosis of spinal muscular atrophy, I realized we hadn't heard from many of our extended family and friends. Bad news travels quickly, so I was fairly certain most people who knew us had heard that doctors had given our baby a year to live. Why wouldn't everyone we knew extend themselves by calling, writing or visiting us? When I asked our hospital social worker this question, she told me, "I'm sure your friends and family are horrified by what's happened. They probably just don't know what to say or do, and they're afraid they might do the wrong thing. So instead, they're giving you the space and time to be with each other. They're probably hoping you'll give them some signal about what you need. Your job is to tell them what is happening with Jack and let them know how they can help you." Another job for us to do, I thought, just what we needed. But what our social worker said actually made some sense when I put myself in the shoes of our family and friends, especially those who had babies or young children of their own. Ours was the worst-case scenario for any family, one that was simply incomprehensible to others. My wife, Anne, and I had been unexpectedly launched into a world no parent could imagine. But it was clear we needed to reach out. This was too hard a situation to try to manage on our own. A few days after speaking with the social worker, we decided to mail a letter to our extended family and friends, honestly explaining Jack's diagnosis, prognosis and how people could support us. We felt it was important to provide some basic facts about SMA, to be honest about the poor prognosis and to let everyone know Jack was receiving excellent medical care. It also seemed important to tell everyone that Jack was a happy baby and that Anne and I were managing reasonably well, all things considered. Writing the letter wasn't fun, but it felt like the right thing to do. January 1996 Dear Family and Friends, We are sorry to have to share some very sad news with you. In November 1995, at the age of 6 months, our son, Jack, was diagnosed with spinal muscular atrophy. SMA is a neuromuscular disease that affects the nerves controlling movement and respiration. We are both "silent" carriers of this genetic disease, for which there is no treatment or cure. Although the lifespan of infants with SMA varies, Jack's doctors estimate he will live for approximately one year, give or take six months, from the time he was diagnosed. We have been assured he will not experience pain and that we will be able to keep him feeling comfortable. To this point, the disease has limited Jack's ability to move his arms and legs, but fortunately he has not yet needed any special medical attention. The better news is that Jack is cognitively normal, with a bright, happy smile and lots of baby talk and raspberries. He is able to suck on his fingers and hold and chew on a few lightweight toys. Like most babies, Jack loves smiling faces, music, children, cats and dogs, balloons, mobiles and ceiling fans. He dislikes having his face wiped, putting on his snowsuit and waiting for attention. That he is happy and in many ways so much like any other baby has kept us going for the past several weeks. Also important to us has been the skilled and compassionate care provided to Jack by the doctors and nurses at the Children's Hospital of Philadelphia. We cannot emphasize enough how important their roles have been for us, despite the prognosis. Obviously, we have endured a difficult two months. We have experienced many emotional ups and downs, and we realize there will be many more to come. Overall, however, we feel we are coping reasonably well. We are enjoying every minute we have with Jack and know that taking good care of him is the most important thing we can do for Jack and ourselves. His smiles are always met with our smiles. As we move into the New Year, we want you to know that you are very important to us, regardless of geography. We would like to be able to keep in touch with you and we'd like to know how you're doing, too. We welcome hearing from you and seeing you, just as we would in good times. We hope you understand why we are mailing you this letter rather than calling you. We want you to know what is happening in our lives, but this is very difficult news to share. Please keep our Jack in your thoughts and prayers. And please be in touch with us. Love, Al and Anne By putting pen to paper, we not only provided direction to the people closest to us, but we began articulating Jack's situation for ourselves with some sense of perspective. Jack was a happy little baby and we were taking care of him and appreciating each day. We received many phone calls and cards in response to our letter, and a number of friends and family took the time to visit with us. Almost everyone thanked us for writing the letter and providing information about Jack's condition. Six years later, our friends and family members have become more comfortable in Jack's presence and more at ease discussing his condition with us. This takes time. Those who have spent more time with Jack are better able to see his positive attributes, and to appreciate his strengths, talents and determination. Jack also has a wonderfully positive attitude, which makes it easy for most people to have an upbeat attitude about him. All in all, we've received a great deal of support from our extended family and friends these past six years, and for that support we're very thankful. So here's what we'd like to tell our loved ones now. April 2002 Dear Family and Friends, You may remember a letter you received from us six years ago, when we wrote to you with the news of Jack's SMA diagnosis and the hope you would support us through a difficult time in our lives. At the time we wrote that letter, we expected Jack to be with us for only a very short time. Little did we know that six years later, Jack would be alive, happy, independently using a computer and driving a power wheelchair, swimming and enjoying the company of friends of all ages. It hasn't been an easy six years by any means: 60 nights in the intensive care unit for five illnesses and two surgeries, countless medical appointments, therapists, nurses, wheelchair repairs and prescriptions. None of it is easy, but we continue to feel fortunate in so many ways. We're very lucky to be the parents of such a happy and determined 7-year-old little boy. We want you to know how much we've appreciated your support, from near and far, since those early days when we didn't know how we could possibly cope with this challenge. Thank you for the phone calls and visits, the letters and cards, and all the other small ways you've helped us. Thank you for including Jack fully in special occasions and for helping us to transport Jack and his wheelchair into your homes. Thanks for so thoughtfully calling ahead to us when someone in your family is ill, so we don't expose Jack to a potentially life-threatening illness. The time you've taken to explain Jack's condition to your own children has been very helpful; he loves the attention he receives from his cousins and friends of all ages. And thanks for taking an interest in spinal muscular atrophy by reading, asking us questions, and contributing your time and resources to support SMA research. Every little bit helps. We feel very lucky to have family and friends who enjoy being with Jack and admiring all the things he can do, despite his physical disability. That you are able to spend time with Jack and enjoy his company just as you do any other child means a lot to us. We're glad you've discovered what we know: Jack is a happy little person worth getting to know. Thanks for giving him the opportunity to get to know you. Love, Al and Anne Albert Freedman, Ph.D., is a psychologist working with children, teens and families in private practice and at Westtown School in Westtown, Pa. He provides consultation and training to professionals in health care and educational settings, and frequently speaks on the topic of caring for children with special needs. His essay, "The Future Is Now," is included in You Will Dream New Dreams: Inspiring Personal Stories by Parents of Children With Disabilities (Kensington Publishers, 2001). Freedman can be contacted at freedman@fsma.org.