Helping Family Understand
It's most important for the people who live with you, your immediate family, to understand what you deal with on a daily basis. It sounds logical that your family should understand because of your daily interaction with them, but it's not that simple. Family members sometimes have the most difficulty understanding arthritis, and how it affects your life, because they may be in a state of denial all their own. Your family will grieve for how you were before developing arthritis, just as you do. In some ways, it can be even more difficult for them to understand because it's not their body going through it. Even so, the more your family understands about the disease and can offer you support, the more effectively all involved can deal with changes the disease imposes on your lives.
The Most Difficult Aspect of Arthritis to Understand
The most difficult aspect of arthritis for your family to understand is the variable nature of your symptoms. If you were to graph your pain or fatigue level on a daily basis, most patients would not produce a straight line. You may feel generally well for several days and without explanation your symptoms will flare. The variable disease course makes it hard to plan ahead, and requires that you and your family be flexible. Even when intellectually it all makes sense, it's hard to respond the right way without fail. Family members may struggle to reconcile certain aspects of chronic arthritis that become part of your life, such as:
Lack of spontaneity
Family members may have difficulty distinguishing how your disease affects their role and your expectations of them. They need to adapt along with you. It's not uncommon for family members to feel like they don't know how to help you or what they can do for you. It's important for your family to realize that they are not spectators. Arthritis demands that the patient and every person with whom they interact closely be open to learning about the disease and how to adapt accordingly.
You Can Help Your Family Understand
Are you making the biggest mistake of all — expecting your family to understand without actively helping them to understand? It's so complicated for your family to know what to do for you and for you to know what to do for them. Family members often don't realize that you think they don't understand. The most effective tool for bridging the gap in understanding is communication. It's important for you and your family to express your sadness, frustration, anger, and other emotions. The worst thing that can happen is for either you or your family to feel you can't talk about it.
The goal for any family living with arthritis is to live as normally as possible. Though life will certainly change, it is important to focus on positive aspects. Focus on things the family can do together. Find new activities to replace activities your family has had to give up.
Think of ways your family could gain understanding and make the suggestions. If you don't get an immediate response to your suggestions, don't give up. It may take more than one try to get your thinking across to them. Ask your family members to read articles, books, or Web sites which explain arthritis in understandable terms. Ask them to go to the doctor with you so they can ask questions or join you in attending support groups. Let them know that they can share their frustrations with you and communicate on a regular basis about how your disease is affecting them.
Beyond the practical ways you can help them understand, express to your family how much they help you by offering unconditional love and responding to your needs. It's different in each family. You may feel your family is not listening. You may feel they are overprotective. You may feel they are insensitive or that they don't help you enough. Whatever the issue or issues, it's imperative to talk about it, not just once, but as often as it takes until you feel you are all on the right track. Understanding arthritis is not an individual endeavor, it's a family endeavor.