- Three Primary Goals of Patient Groups -
When I met Nanbyo (Intractable diseases) patients, many of them don’t know the actual name of their disease and required medication. Some felt that their doctors were too busy to ask them and others said that doctors told them "it’s not important to know such details" regarding their affliction. I believe that if you sail the ocean, you must know your ship, how it works, and where it is going.
In the same vain we need to know our bodies as well.
It’s very important to understand your disease properly also the effects and/or side effects of your medication. You should also be aware of your physical limitations relative to your condition i.e. work/rest restrictions, exposure to the elements like the sun etc. Try not to fear and despair about your circumstance.
By knowing your disease you will understand your limitations now and in the future. You’ll discern if you are stabilizing or getting worse. Avoid making your own conclusions regarding your condition.
Understand your medication and refrain from altering your prescription through dosage and medicinal adjustments without your medical practitioner’s permission. Once you know the expected side effects of your medicine try to continue use unless you can’t adjust. Consult your physicians if this occurs.
Know your disease, know your treatment!
Patients’ groups conduct lectures, consultations, and social activities. We also publish informative newsletters.
Have the courage to face your disease(s).
Be open-minded living with your disease(s).
In the past, out of despair, some patients committed familicide. After these tragic incidents, patients groups were formed to encourage like disease patients to help prevent such tragedies.
“We felt hopeless when we heard that our diseases were rare, serious and incurable. Depression created isolation and the will to dream and look forward to an achievable future. Our conditions can be financially debilitating and burdensome on family members. Even if our conditions improve, it is still likely that we can’t keep a steady job. In addition, hospitalization is not possible in this situation. We may lose close relationships, leading to lots of time to reflect on our misfortunes without sharing our feelings. During this time it is hard to be optimistic”.
Our patients’ groups promote meetings to instill courage and promote speaking-up in order to release pent up emotions. Correspondence including newsletters and the creation of recreational activities add to the welfare of suffering patients. Through the media we appeal to society in general to further understand the goals of our intentions.
Try to refrain from the following thoughts.
“Why am I the only one with this bad luck”?
“They can do it because their conditions are not as severe as mine”.
Instead focus on the following.
“I can be just as good if not better than them”.
“I can do it”.
Some people say, “You look very happy and active”.
“Is it true that you have a serious disease”?
Yes, we have diseases but we have a healthy, positive mind.
It is not as common as you think to consider everyone is of healthy body and mind.
Even though we are afflicted with serious conditions we should still be aware of and feel the empathy from others.
It is not until you get sick that you realize how important medicine is. We take for granted the value of welfare until we need it. Nanbyo patients understand the many difficulties we have. Yet we don’t know how to solve many of the problems in our society. Even though we know our diseases and live with our diseases, there are still many hurdles to overcome.
These difficulties need to be solved expeditiously.
However, our financial and political limitations are hindering us.
A societal, cooperative approach developing ways to solve them is needed.
Sharing our specific experiences is a good way to inform society institutions and the public in general, of our situation. The specifics of which are but not limited to paying medical fees, hospital visits, working, studying, medicine, family, hospital companions, pension, disability certificates and public assistance.
It is hard to understand the experience of Nanbyo sufferers.
To those afflicted with a Nanbyo disease, responses such as “We told you so” or “You never listen to me” are detrimental to the advancement of our society.
The society strives to move forward in the support of our sufferers by learning and benefitting from our past difficulties. We believe that it is our social responsibility as patients to educate the general public regarding our circumstances and situation. Should our actions result in advancing our cause a sense of pride will prevail within the society.
We can do it!
In addition, some patients are concerned and feel inadequate about their ability to contribute and support our society in a more physical, knowledgeable or spiritual way. Their specific affliction may prevent them from contributing as they would like.
To this point, we would like to say that paying your fees as required are just as important and a substantial contribution that is extremely beneficial and appreciated.
Your membership fees are the main driver of the many endeavors that we challenge our administration to achieve on behalf of all our members.
Also, it is important to understand that most of our staff members and family are also Nanbyo sufferers. They take great pride in what they do even though they are not compensated.
The newsletter is a great medium for disseminating our information and stories that tell the experiences of our members. We strongly request your feedback regarding the newsletter as it helps to determine how effective our efforts have been and motivates us to do better.
This article was originally written in 1981 by Tateo Ito.
It has provided a very poignant yet useful documentation that has acknowledged universal truths about Patient Groups in Japan.
We would like these candid observations and opinions to be shared internationally therefore we have translated it into English.
Shiori Nagamori, Nanbyo Support Network Japan, 2019