Coping with chronic disease

The Foundation for IgA Nephropathy

Coping with chronic disease

IgA nephropathy is a chronic kidney disease. As discussed elsewhere in this website, it usually leads to some level of chronic renal insufficiency, and it sometimes leads to end-stage renal disease (esrd), also a very chronic, usually permanent condition with potentially life-altering consequences.

We don't want to write things that will scare you, but the reality of chronic kidney disease of any kind, IgAN included, is that if and as it progresses closer and closer to actual kidney failure, it is bound to affect you as an individual, and it will affect your family. In many ways, kidney failure in one member of a family is kidney failure for the entire family. This is why developing good coping skills is essential. Unfortunately, this is the part that is missing in so many people's lives when they are diagnosed with this disease. Most of the time, you don't get to see a renal social worker until you are already at or very close to esrd, and that might be a little late to start putting things into perspective. If you encounter depression or anxiety, you might easily find yourself being treated medically in a way that doesn't even take the chronic kidney disease into account as a contributing factor. This is what we hope to correct here, as best we can, based on our experience.

The Foundation believes that the information provided in Coping with Chronic Disease is as important as the technical information and jargon about IgAN - perhaps even more so. We hope this can be of use to some of you, perhaps by helping to steer you in the right direction.We didn't invent any of this. What we are doing is attempting to put it all together from our point of view as IgAN patients.

5 Stages of acceptance

Professionals who help people deal with loss have long used the 5 stages of acceptance as a kind of roadmap to help people get to where they need to be in order to proceed with living their lives as normally as possible, or at least, to help them recognize where they are in the grieving process. This "roadmap" was originally intended for dealing with grief. In the case of chronic kidney disease and eventually kidney failure, the grieving is for the loss of our own expectation of good health. For the rest of your family, it is the loss of you as a normal, healthy individual within the family, and perhaps their loss of a normal life with you. Ultimately, we all fear losing our health, and we all fear dying, but we all eventually have to face both at some point in our lives. We all fear losing are spouses, our parents, our children, and our friends. Chronic kidney disease creates the conditions where these fears take on more importance.

We are not going to say that being aware of the stages of acceptance will make everything feel good. They are simply a tool to use in order to describe the process in a way that is easily understood. They are also not as cut-and-dried as truly being 5 distinct stages, or a never-failing sequence. There can be overlap, and people might not necessarily go through each change in the usual sequence they are given. Moreover, you can have ups and down emotionally as you continue through life with chronic disease, and you might sometimes go backwards or forwards towards acceptance. This is normal. The 5 stages are simply a convenient "shorthand" for describing a process that we and our families go through.

The 5 Stages of Acceptance

Denial

For many people, being diagnosed with IgAN is the first time they have ever been faced with significant, irreversible disease - for themselves or within the family. It's a difficult concept to deal with, and many people initially try to minimize its impact by not accepting it right away. They may think there has been a mistake, or that it's just not something they need to worry about. Some amount of healthy denial may be appropriate in being able to carry on a normal life, but if denial persists or gets to the point that the person ignores medical advice, the effect could be faster progression of the disease, or even potentially dangerous symptoms like high blood pressure that might go undetected or untreated. However, it's been this writer's experience that IgAN is not the kind of disease which can be easily denied, unless it's very mild and there are none of the more dramatic symptoms like visible blood in the urine or heavy proteinuria.

Anger

Anger probably will not be a significant factor if the IgAN is mild and there are no serious problems with proteinuria or hypertension, but it can be. Nobody is happy to have chronic disease, let alone a disease which could lead to kidney failure. People sometimes respond to this by becoming angry at themselves, or at various aspects of the "establishment" or "system", or at other people. They are angry at themselves for getting sick or for not having done certain things, and they are angry at doctors because the disease was not diagnosed sooner or because they cannot cure it. This kind of anger might extend to pharmaceutical companies, insurance companies, government, etc., and it may also be directed at friends and family. Of course, we know that nobody is really to blame for you having IgAN. It's unlikely there is anything you, the patient, could have done, and it is likely that the disease would be about the same now even if it had been diagnosed sooner. Anger just seems to fade away as time passes and as the person learns to live with the disease.

Bargaining

Bargaining and denial are closely-related. In denial, you sort of forget you have anything, or you refuse to accept it. In bargaining, you accept that you have the disease, but you start convincing yourself that you will cure or stop the disease by doing certain things, and these are usually things that unduly deprive you of something or things for which you have to make a personal sacrifice which might not be necessary. For example, you might promise yourself that you will go on a rigid and difficult diet even though your doctor hasn't recommended any diet, or that you will start exercising non-stop, stop drinking alcohol completely, etc. While doing some of these things might not be harmful in themselves, or they can even be helpful to some degree (like not smoking, exercising, a healthier diet), bargaining is overestimating the positive effect on the disease. Bargaining can sometimes also involve adopting alternative treatments which have not been demonstrated to have any value. In this case, the harm could be that you choose alternatives instead of medical treatment, or it could be that some alternatives like herbal treatments at worse cause more renal failure, or at least cause large sums of money to be spent uselessly that could be better spent on family or personal needs. Even if some of these things may be benefit your overall health, they will not cure IgAN, nor will they reverse chronic renal insufficiency.

Depression

Having IgAN may not truly affect your life until you get to the point of having end-stage renal disease, or it may affect it greatly if you have more severe symptoms like nephrotic syndrome, severe hypertension, etc. You may have to take medications even though you are a person who has always avoided taking even a simple aspirin, or you may have to start limiting certain parts of your diet, such as sodium, and later, potassium (under certain circumstances). You might also start feeling a little dependent on other people, and on the medical system. Or, sometimes, while you still have the IgAN, friends and relatives have forgotten about it after a while, and you are left with little emotional support.All of this may leave you feeling a little depressed, perhaps because you feel powerless or hopeless. As time passes, and perhaps with increased knowledge about IgAN and renal failure, you will adjust. However, we must caution that chronic renal insufficiency itself or some medications may cause or contribute to depression. So, if it persists, it's important to discuss this with your doctor or nurse. In certain cases, medical treatment might be necessary.

Acceptance

We all eventually learn to live with whatever diseases we have. Acceptance is knowing that, while we don't choose kidney disease and we would prefer not to have it, with proper treatment and perhaps with lifestyle changes if necessary, we can live a good life. Even people who have reached end-stage renal failure and are on dialysis go on with their lives, even though it may have some limitations they didn't have before. Some people reach acceptance quickly, other take some time to get there. Sometimes, it can be useful to be able to talk to someone other than family and friends (who may not truly understand what we are going through). This could be a member of your health care team, such as your nephrologist or renal nurse, a social worker (if your disease is advanced enough for you to have access to one), a member of the clergy, etc. We at the Foundation for IgA Nephropathy hope that our online support group can be of help to you.

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