icnmgrjill
09-27-2004, 02:33 PM
Our latest column from Ask Frannie is now here!!! I just have to say that I love Frannie's wise suggestions.... I think she's very insightful and helpful.
http://www.ic-network.com/frannie/
Dear Frannie,
I am recently diagnosed with interstitial cystitis. I am engaged and was planning to get married in April of 2005. We are only 24 and I don't think its fair to hinder the rest of his life with my chronic illness. I know he loves me but this has been extremely hard on him. Should I break up with him in order to allow him to live a normal life?
I have been asked this question many times in many ways, especially recently. I have been asked from the patient's point of view and from the "Caregiver to Be's" point of view. Everyone wants to know if it is worth the risk to marry a person with a chronic illness. What is written below is my personal opinion. There are many ways of looking at this. This is how I see it.
It is painful for me to answer this question because I too am a person with a chronic illness...an individual in every sense of the word. I still wake up in the morning, watch the sunrise, look forward to my day, and try to find meaning in my life. I am still capable of giving love and I need love as much as any healthy person. I am capable of making good conversation, sharing my feelings, being a wonderful friend, being a wonderful mother, a wonderful partner, and giving back to society, perhaps not financially, but in many ways healthy people never have time to think of.
We with chronic illness are people, and our lives still have meaning to us and to others. We may not always be healthy but that is only due to today's limitations in medical science. Next week, next year, next decade, there may be an answer for us. There may be a cure. Isn't our life worth the same as healthy persons? Do we not deserve to be happy?
No one in this world knows what tomorrow will bring. We fool ourselves into making our lives routine in order not to deal with that fact, but that fact still remains. No one knows the future. There are healthy people who die every day from reasons other than chronic illness. Should they not have married because of what might happen? Should they deprive themselves of a rich and happy life just because of the possibility that they may become sick or they may die? My husband says it best. He says, "There is always a risk with loving people. But the alternative is to have never loved at all."
If you are marrying someone, you are marrying him or her in sickness and in health. You, my dear, are lucky in that your significant other is aware ahead of time of your condition. Will he leave you? It's a risk all human beings that love take.... Not just those with chronic illness. IC can be treatable. There is much research being done to make IC patients more comfortable. It is only a matter of time before IC is curable.
You deserve to be happy. You deserve to love and be loved. You deserve to live your life to the fullest and have a family one-day, if that is what you want. Don't deprive yourself of living because you have IC. Instead go with the flow and the flow will go with you.....
Talk to your significant other about your illness and how you cope. Explain to him that sometimes it is difficult. If he is aware of your challenges, shares in your concerns and is educated about your illness...let him make his own decision. If he decides he wants to spend his life with you, then love him with all your heart.
Dear Frannie,
Q. My husband supports me emotionally and financially. I have tried to go back to school recently but have found it to be too much regarding my chronic pain. I have considered filing for disability due to my condition but I am concerned with the stigma attached to being on disability. My husband feels I am trying to take the "easy way out" and says I am going to be in pain anyway so I might as well be working while in pain. How can I make him better understand that I am not giving up but taking the main option that seems to be available regarding this situation?
A. My dear friend. I hear confusion in your question. I hear you telling yourself that the "stigma" of filing for disability concerns you. I hear you saying that you are in great pain. I hear you questioning inside yourself, whether or not you should be on disability. And last of all I hear your sadness that your husband does not believe in your pain being bad enough to disable you.
A difficult situation, but a stage in the process that we all must go through in determining whether or not to continue working. It is a time of more questions than answers, and more feelings than words. For many of us, our jobs and careers defined who we were. And when our illness or pain takes over our bodies, then our lives, we don't want to let go. We become afraid that we will lose ourselves forever.
The process of chronic illness is all about redefining who we are. And though you do not sound ready to deal with that, this is what you may have to do. In doing this, we sometimes have to stop everything and start again from scratch, doing only the things that our bodies let us. And even though our minds crave more stimulation, or the familiarity of the workplace, sometimes this is not possible.
The "Americans with Disabilities Act" however in a few cases, can help with adaptations and changes in the workplace. If this solution can give you the things you need in order to continue working, consider it. Do you want to work fewer hours? Do you need to be on your feet less? Talk with your doctor about it, if necessary. However, this may not be the appropriate answer for you.
My advice to you is the following:
Clarify your own concerns about working. You sound very confused. Is it that your days are too long? Would part-time work be easier?
Do you need to see a pain specialist to reevaluate your pain medications? The goal of pain therapy at this point in time is to help you function with your pain. Perhaps there is a newer medication that might work for you? Don't be afraid of this option.
Be solid in your decision. If none of the above seems like a viable option but you feel that you still cannot work, then be solid in your decision. If your husband hears that you are not solid, it is only human nature to question you.
Work out a financial plan. If you can survive without your income, come up with a plan and show it to your husband. If you cannot, come up with a plan for things that you can cut out of your budget while you wait for disability to be approved. Most disability takes some time to be approved. SSD can take 2 years or more. Private insurers may take less time.
Share your belief with your husband, only this time be solid with him. Talk with him about the pros and cons. What are his concerns? Are they financial? Show him your plan.
If necessary, see a counselor. My best advice is to see a psychiatrist who does counseling. A psychiatrist will be aware of your illness, its issues and your medications in counseling you with a medical perspective.
Have your husband attend your sessions once you have obtained your counselor's support.
Dear Frannie,
Q. My husband thinks I am a drug addict because I am on pain medication and he takes no medications. What can I say to him?
A. Being called a "drug addict" under any circumstances brings negative thoughts to mind. One thinks of the drug addicts who steal and lie in order to sustain their habit. Yes, unfortunately drug addicts do exist. But I hear you struggling to explain to your husband that you are not taking drugs to get "high" or for a good feeling. You are taking medications in order to alleviate great physical pain.
Pain today continues to be misunderstood by many, even though there are more and more people today in pain. There is a new medical specialty called "Pain Specialist" and these are doctors who are certified in pain management. This specialty now exists because of the sheer number of patients who live with different types of chronic pain. These patients are sometimes misunderstood by conventional medical science. Recently the word has gotten out that chronic pain should be controlled and that people can function sometimes with pain, given the right medications. Most hospitals now have within their "Patient's Bill of Rights", a statement that they will help alleviate their patients' pain.
Pain is not something that one can ignore. In fact there is literature that states that ignoring pain can sometimes lead to a bigger pain response. Therefore, it is in a patient's best interest to be helped with their pain, so that they can live a more normal and productive life.
Has your husband been with you to your doctor's appointments? Does he understand your illness and your doctor's rationale for giving you pain medications? Try the following:
1. Have your husband accompany you to your doctor's appointments.
2. Educate your husband about your illness. Send him articles or emails that he can read at his leisure.
3. Communication is key. Talk with your husband about his concerns.
4. If possible see a counselor. One who can advocate for you with your husband. Have your husband attend a few sessions, if need be.
Trying to function with pain today should be an easier endeavor than it is. Unfortunately, there is old stigma about one who uses pain medication. However the word is out now, and the attitude toward chronic pain is slowly changing.
And as always remember, you are on a journey. Your husband has not experienced what you are experiencing, so you are walking down your path first. There is a time in every living person's life, when they experience illness. And he will learn much from you, when his time comes.
http://www.ic-network.com/frannie/
Dear Frannie,
I am recently diagnosed with interstitial cystitis. I am engaged and was planning to get married in April of 2005. We are only 24 and I don't think its fair to hinder the rest of his life with my chronic illness. I know he loves me but this has been extremely hard on him. Should I break up with him in order to allow him to live a normal life?
I have been asked this question many times in many ways, especially recently. I have been asked from the patient's point of view and from the "Caregiver to Be's" point of view. Everyone wants to know if it is worth the risk to marry a person with a chronic illness. What is written below is my personal opinion. There are many ways of looking at this. This is how I see it.
It is painful for me to answer this question because I too am a person with a chronic illness...an individual in every sense of the word. I still wake up in the morning, watch the sunrise, look forward to my day, and try to find meaning in my life. I am still capable of giving love and I need love as much as any healthy person. I am capable of making good conversation, sharing my feelings, being a wonderful friend, being a wonderful mother, a wonderful partner, and giving back to society, perhaps not financially, but in many ways healthy people never have time to think of.
We with chronic illness are people, and our lives still have meaning to us and to others. We may not always be healthy but that is only due to today's limitations in medical science. Next week, next year, next decade, there may be an answer for us. There may be a cure. Isn't our life worth the same as healthy persons? Do we not deserve to be happy?
No one in this world knows what tomorrow will bring. We fool ourselves into making our lives routine in order not to deal with that fact, but that fact still remains. No one knows the future. There are healthy people who die every day from reasons other than chronic illness. Should they not have married because of what might happen? Should they deprive themselves of a rich and happy life just because of the possibility that they may become sick or they may die? My husband says it best. He says, "There is always a risk with loving people. But the alternative is to have never loved at all."
If you are marrying someone, you are marrying him or her in sickness and in health. You, my dear, are lucky in that your significant other is aware ahead of time of your condition. Will he leave you? It's a risk all human beings that love take.... Not just those with chronic illness. IC can be treatable. There is much research being done to make IC patients more comfortable. It is only a matter of time before IC is curable.
You deserve to be happy. You deserve to love and be loved. You deserve to live your life to the fullest and have a family one-day, if that is what you want. Don't deprive yourself of living because you have IC. Instead go with the flow and the flow will go with you.....
Talk to your significant other about your illness and how you cope. Explain to him that sometimes it is difficult. If he is aware of your challenges, shares in your concerns and is educated about your illness...let him make his own decision. If he decides he wants to spend his life with you, then love him with all your heart.
Dear Frannie,
Q. My husband supports me emotionally and financially. I have tried to go back to school recently but have found it to be too much regarding my chronic pain. I have considered filing for disability due to my condition but I am concerned with the stigma attached to being on disability. My husband feels I am trying to take the "easy way out" and says I am going to be in pain anyway so I might as well be working while in pain. How can I make him better understand that I am not giving up but taking the main option that seems to be available regarding this situation?
A. My dear friend. I hear confusion in your question. I hear you telling yourself that the "stigma" of filing for disability concerns you. I hear you saying that you are in great pain. I hear you questioning inside yourself, whether or not you should be on disability. And last of all I hear your sadness that your husband does not believe in your pain being bad enough to disable you.
A difficult situation, but a stage in the process that we all must go through in determining whether or not to continue working. It is a time of more questions than answers, and more feelings than words. For many of us, our jobs and careers defined who we were. And when our illness or pain takes over our bodies, then our lives, we don't want to let go. We become afraid that we will lose ourselves forever.
The process of chronic illness is all about redefining who we are. And though you do not sound ready to deal with that, this is what you may have to do. In doing this, we sometimes have to stop everything and start again from scratch, doing only the things that our bodies let us. And even though our minds crave more stimulation, or the familiarity of the workplace, sometimes this is not possible.
The "Americans with Disabilities Act" however in a few cases, can help with adaptations and changes in the workplace. If this solution can give you the things you need in order to continue working, consider it. Do you want to work fewer hours? Do you need to be on your feet less? Talk with your doctor about it, if necessary. However, this may not be the appropriate answer for you.
My advice to you is the following:
Clarify your own concerns about working. You sound very confused. Is it that your days are too long? Would part-time work be easier?
Do you need to see a pain specialist to reevaluate your pain medications? The goal of pain therapy at this point in time is to help you function with your pain. Perhaps there is a newer medication that might work for you? Don't be afraid of this option.
Be solid in your decision. If none of the above seems like a viable option but you feel that you still cannot work, then be solid in your decision. If your husband hears that you are not solid, it is only human nature to question you.
Work out a financial plan. If you can survive without your income, come up with a plan and show it to your husband. If you cannot, come up with a plan for things that you can cut out of your budget while you wait for disability to be approved. Most disability takes some time to be approved. SSD can take 2 years or more. Private insurers may take less time.
Share your belief with your husband, only this time be solid with him. Talk with him about the pros and cons. What are his concerns? Are they financial? Show him your plan.
If necessary, see a counselor. My best advice is to see a psychiatrist who does counseling. A psychiatrist will be aware of your illness, its issues and your medications in counseling you with a medical perspective.
Have your husband attend your sessions once you have obtained your counselor's support.
Dear Frannie,
Q. My husband thinks I am a drug addict because I am on pain medication and he takes no medications. What can I say to him?
A. Being called a "drug addict" under any circumstances brings negative thoughts to mind. One thinks of the drug addicts who steal and lie in order to sustain their habit. Yes, unfortunately drug addicts do exist. But I hear you struggling to explain to your husband that you are not taking drugs to get "high" or for a good feeling. You are taking medications in order to alleviate great physical pain.
Pain today continues to be misunderstood by many, even though there are more and more people today in pain. There is a new medical specialty called "Pain Specialist" and these are doctors who are certified in pain management. This specialty now exists because of the sheer number of patients who live with different types of chronic pain. These patients are sometimes misunderstood by conventional medical science. Recently the word has gotten out that chronic pain should be controlled and that people can function sometimes with pain, given the right medications. Most hospitals now have within their "Patient's Bill of Rights", a statement that they will help alleviate their patients' pain.
Pain is not something that one can ignore. In fact there is literature that states that ignoring pain can sometimes lead to a bigger pain response. Therefore, it is in a patient's best interest to be helped with their pain, so that they can live a more normal and productive life.
Has your husband been with you to your doctor's appointments? Does he understand your illness and your doctor's rationale for giving you pain medications? Try the following:
1. Have your husband accompany you to your doctor's appointments.
2. Educate your husband about your illness. Send him articles or emails that he can read at his leisure.
3. Communication is key. Talk with your husband about his concerns.
4. If possible see a counselor. One who can advocate for you with your husband. Have your husband attend a few sessions, if need be.
Trying to function with pain today should be an easier endeavor than it is. Unfortunately, there is old stigma about one who uses pain medication. However the word is out now, and the attitude toward chronic pain is slowly changing.
And as always remember, you are on a journey. Your husband has not experienced what you are experiencing, so you are walking down your path first. There is a time in every living person's life, when they experience illness. And he will learn much from you, when his time comes.