Coping With a Disability
Today, we want to go over coping with disability, and ways that people can be helped who are going through the experience of a new disability. Recently, I heard of an acquaintance who had suffered an injury while diving into a swimming pool. They’d hurt their neck, and now they’re paralyzed from the chest down.
Understanding the Emotional Journey
Before this they’ve been very active, and lived a very full life. Now, not only are they paralyzed so they can’t feel or move, but they can’t do many things for themselves. Now the family is going to have to transition and make changes in order to deal with this new situation of providing that care for this person that used to provide the care for them.
There are a lot of unanswered questions at these times, and if you’re going to help people learn how to cope with disability, there are two areas that are critical. The first is helping them deal with the common emotions that people experience as they move into this new lifestyle, this new time with a disability affecting them personally or someone that they love in their circle of friends or family.
The common emotions that they have to deal with, helping them through that, helping them know what to expect and experience. Then two, getting them peer help, peer groups to surround them in order to see them transition from what life was like prior to the disability, to what life will be like now after the disability.
We’ll begin then with common emotions. When someone first experiences a disability, there is a grieving process that takes place. Depending on the severity of the disability and the type of disability, not only the person who is experiencing a disability but those around them often go through a period of grieving.
They’re emotionally dealing with the dissonance caused by the way things used to be, and now the way things are. This friend of mine -who- this acquaintance who had injured their neck and is now paralyzed, before they were very active and now they are passive, they’re stuck, they can’t feel, they can’t move, and others are doing things to them.
Not only that person but those around them, move through a common grieving process as they cope with it. In that grief process the three main emotions that are generally felt and experienced are anger, frustration, and guilt. These also are associated with grieving as well. Anger, “Why me?” Why us? Why now? Why did this happen?”
There is a sense of anger, a sense of frustration. “I don’t know what to do. I don’t know what to expect. Where are we going to get help? Where are their resources? I feel helpless.” In some ways that gives way to hopelessness. There’s anger, there’s frustration, and then the biggest one that I think most people need help with is guilt, feelings of guilt.
Why? Why feelings of guilt? Basically, the person starts to say they’re suffering, and the guilt process is mostly for those close to the one who has the disability, not the person with a disability themselves. Family, friends, and loved ones close to the person who now has a disability, they feel guilty.
“Why them? Maybe it should have happened to me instead of them.” Then along with that, if they’re suffering they start thinking this way: “I want to end their suffering. One of the best ways to end their suffering is, “I wish they just would die. I wish they would just go on, and it would have been better for them instead of having the injury and the disability at the injury had just killed them.
If they’d just died, they wouldn’t be suffering, we wouldn’t be in this situation.” Because they feel sorry for the one who has this disability, and perhaps they’re feeling sorry for themselves, and now they’re in a new difficult situation and they want relief all the way around, wishing that the person had died instead of being left with the disability causes a great deal of guilt.
“I’m wishing this person were dead.” Even though there may be good motives behind it, “I want to end their suffering.” The fact that they think this at all often induces guilt feelings. The second form of guilt that comes in is associated with perhaps this person who has the disability will now need permanent long term care in a facility.
Ordinarily, this really bothers people to say “I’ve got to give this loved one into the hands and care of this facility for long term care. I should be the one providing the care, but I don’t know how I can do that. I don’t have the time, I don’t have the resources.”
They feel guilty for having to commit someone to a long term care facility. It’s very important to help them deal with the anger, with the frustration, and especially with the guilt that they will experience as they go through this process of dealing with the new disability.
In order to help people with this, it’s not only important to inform them: “This is what you can expect and here’s how we can help you through those emotional experiences.” To get them concrete help, and this is where number two, peer groups, come in and are so critical.
Now professionals need to set the agenda, and push things forward in terms of, “Here is the best way to help this person.” The professionals need to do that, but in terms of actually walking through the process, and providing the best care possible peer groups have been found to be invaluable.
You get someone, or someones, a group, a peer group, who has already experienced this to then come alongside those who are new to it and walk them through it. Here’s what a peer group can help provide: one, education. They can say, “Look, I know where you are, I’ve been where you are.
Not knowing anything. Utterly clueless, helpless, hopeless, frustrated, angry, all that stuff. Don’t worry, here’s the information you need about this disability. How we can cope. How we can deal with it.” Their first function is just to provide basic information. Two, they provide support.
“I know how you feel, and I can actually say that because I’ve been through it. -I am what I am- I was where you are now, and I want to help you. They can put an arm around them and support them. Care, comfort, and support are huge along with the education. Then, having a peer group around them helps prevent social isolation.
Basically, when people go through this maybe they’re embarrassed, maybe they’re frustrated, they don’t know what to do, and they tend to pull in and isolate. This is very harmful, in the long term, to the one who has a disability and those around them to be isolated and cut off from outside help and support.
Having a peer group established helps prevent the social isolation. Then, they can help provide information on resources. They can say, “Look, this is what we’re using. Here is the organization we’re going with. Here’s the help, or the program, or whatever that has seen us and done us the most good.
Here’s the information for you so you can do that.” There’s a great deal of relief. I have some friends who have a baby with Down syndrome. It’s a difficulty, but when they got plugged into a network, plugged into a peer group, all of this started to flow.
They got the support from other parents who have Down syndrome babies, they get educated about it, they’re not isolated, they spend time with these people. They’ve been told about resources to help with rehabilitation and various forms of therapy, and things like this to help train and teach and assist, not only the parents, but the baby.
Then, they get coping strategies. “Look, at different milestones you’re going to experience this, or feel this, or maybe go through that. Here’s how to cope with that. Here’s how to help.” Then finally, they can help say, “Look your role is now being redefined. You used to think your role was this, but now it’s this.
I understand what that feels like, from being the one cared for to the one providing the care. The difficulty with it, let me help you through that difficulty of transition to your new role in helping the person with the disability.”
Essentially two things that in helping people come to terms with a new disability, and cope with it: one, common emotions, educate them about this, that they’re going through a grieving process. Two, get them plugged into a peer group that can meet and supply all of these much needed things.
This has been just a basic overview of the two primary things that are helpful and people dealing and coping with disability.