Since being diagnosed with 2 chronic illness's, Intracranial Hypertension (IH), & Chiari, I have gone through a lot. Both are often an invisible illness, and many times it is not fully understood what we go through on a daily basis. Please read what I have copied below and try to understand a few important things that we want you to know.
Chronic illness isn't something that we like to talk about, but every day people are diagnosed with an incurable illness or disease. Learning to care for and support family and friends with a chronic illness takes time and patience. When the patient is first diagnosed, everyone in the circle of family and friends gathers the wagons. If the initial diagnosis involves hospitalization, some will visit, others will cook food, and still others will offer to babysit or clean house. Everyone wants to help out in any way possible. This is a great way to show your support and friendship. The problem with chronic illnesses is that, because they last over time, usually the extensive support system disappears. People get tired of erratic hospitalizations and days on end when the illness puts the patient down for the count for a week or more. It is easy to become immune to the painful complaints of the patient, but is essential that you do not. We still need you to be there.
If you are a friend, family, or caregiver of a chronically ill person, commit to that individual and yourself that you are willing to stick with them through thick and thin, in sickness and in health. The chronically ill need to know that you understand and that you care. At some point in the illness most patients begin to assume that anyone who sticks with them is doing so out of obligation. Find every way possible to assure the patient that you are standing beside them, going to doctors' appointments, or spending nights in the hospital because you care. It is up to the caregiver and friends to help allay the concerns of the patient that they have become a burden.
Unless you have had a chronic illness yourself, you cannot imagine the mental battle that goes on in addition to the physical battle that we as individuals are facing. Sometimes, previously vital and healthy people are struck suddenly with the symptoms of their illness. They may be aggressive, hard workers, productive people in society. When they are taken out of the game, they suffer a huge blow to their sense of self-worth. They may feel very lonely and become depressed as time goes on.
As a friend or family member, you can play an important role in two ways. You can affirm their worth verbally, via emails, Facebook, or cards. You can't tell them enough how important they are, and how valuable they are as a human being. You can also help build their self-worth by encouraging them to do the things they feel like doing. Don't treat them like invalids, especially on a good day, if they feel like getting out and doing something, do it. Don't wait. The next day, or even the next hour their physical stamina can wane.
Remember, when they get weak, can't do things you want to do, or lack the spontaneity they once had, it is the illness that has caused the change. You are the healthy one, and must not take declined invitations personally. Because the chronic illnesses, by definition last over the long haul, you may have to remind yourself of this again and again. The one who is ill is engaged in the battle head-on. They are fighting to regain health and some sense of control in their life.
People living with a chronic illness need you to be there, even if they have trouble saying it. You are an important part of their life and you play a vital part in their recovery.
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