When you have a chronic disease like lupus it tends to not just affect you but it affects your entire family. I recently posed this question to my group and I was amazed the responses I received. I guess until you really bring this up to a large group with various family dynamics you never know what type of responses you'll get.
I have a couple of single mothers who gave me a response of, "They ignore it like like it's no big deal", and where one broke up a relationship because of his lack of caring of her condition. The "one" mother has adult children and her kids are wonderful. They'll even go to her doctor appointments with her. "I" think that's important for her kids to understand what she's going through and to actually understand her mother's disease.
Some members have even mentioned that they have lost contact with family members because those particular family members either don't understand lupus or don't believe the family member is actually sick. This goes back to the theory, "But You Don't Look Sick". This is also a great case of being afraid of the known or is it, being afraid of the unknown?
This is a direct quote from one member, "My husband and children have been more supportive than I have had any right to hope for. It's like the kind of supportive you expect in fairy-tales and that's about it. In that respect I really lucked out the rest of my family not as much as I'd like. My sister-in-law makes things tough sometimes whenever my brother tries to help out."
Here's another direct quote: " My hubby just went to bed after a very long conversation about how things have been with me and how he feels. For a very long time, I kept everything to myself (about 4-5) years ago and it drove a wedge in our marriage. It was very bad for about a year period where we were like roommates and then culminated in us almost getting divorced. We went thru counseling and learned how to talk with each other. My health right now is horrible, just got a nice ride in an ambulance today, and to be honest we are closer than ever. I let him into my world and no longer hide the pain, sorrow or fear that I have; physical or mental. He does the same and it has brought us closer. Our kids are 7 & 8 and for a long time I was able to "hide" my lupus but then my GI issues got out of control and we had to address how sick I truly was. It is tough to hide the fact that I only weigh 20 lbs more than my 7 year old. They have been thru so much this spring but they see a counselor which helps them and we are trying not to hide things from them but keep things age appropriate. They see me "feed", they see my tube and watch me give myself meds but they don't see what the actual "hole" looks like. When they "sense" that I don't feel good they will ask what my number is on the pain scale and that is how they know how I feel that day. I don't want them to live in fear so they don't know how seriously ill I truly am but they do know I am sick."
[I should note; I usually don't do direct quotes, but because of the nature of this post, I find it to be of utmost importance to be accurate. These are also poignant.]
For the most part, the husbands and wives are more than supportive by caring for and attending the needed appointments and hospital stays. Most of the children are in grade school and understand only on their level of understanding.
Some of the parents of the members are supportive yet some are very distant or out of the picture. This relates to the above mentioned, "But You Don't Look Sick" theory. It's so unfortunate that people are still uneducated and can't get over the "bump in the road" of not understanding what this disease is all about.
As for me? Well, I have two adult daughters who totally understand my condition. They both live in another state but are emotionally supportive and understand my condition. I also have two young boys who do understand that mommy is sick. My 4 year old has been to numerous doctor appointments, lab appointments, and hospital appointments with me. Both of my boys know mommy is sick and has lupus. The boys also understand mommy gets migraines all the time. I think it's extremely important to educate your children, when they can understand, how you feel and what's going on.
My husband is MORE than supportive. He's my rock! When I have doctor appointments, when I have to go to the hospital, have my Benlysta Infusions, or whatever I need, he will tele-commute (work from home) and care for the boys. He will also drive them to school and pick them up. When I'm sick he will stay and take care of me. I love him! He's great!
My mom is a wonderful supporter of me! She also has a few autoimmune diseases, but not lupus. But, she supports me like there's no tomorrow! My dad doesn't say too much. I'm not sure if it's the "unknown" that scares him or if it's the "known"? It's kind of a thing that we just don't talk about it. Avoidance I guess.
I have two brothers. One 11 months older than me and one 14 years younger than me. My older brother lives out of state and my younger brother is in Kabul, Afghanistan. The are both supportive.
My in-laws are all supportive too. I honestly couldn't ask for a better support system. I believe a great support system along with a positive attitude is extremely important when you have a chronic lifelong disease. Those two previous things won't cure you, but it will take you a long way~
I have a couple of single mothers who gave me a response of, "They ignore it like like it's no big deal", and where one broke up a relationship because of his lack of caring of her condition. The "one" mother has adult children and her kids are wonderful. They'll even go to her doctor appointments with her. "I" think that's important for her kids to understand what she's going through and to actually understand her mother's disease.
Some members have even mentioned that they have lost contact with family members because those particular family members either don't understand lupus or don't believe the family member is actually sick. This goes back to the theory, "But You Don't Look Sick". This is also a great case of being afraid of the known or is it, being afraid of the unknown?
This is a direct quote from one member, "My husband and children have been more supportive than I have had any right to hope for. It's like the kind of supportive you expect in fairy-tales and that's about it. In that respect I really lucked out the rest of my family not as much as I'd like. My sister-in-law makes things tough sometimes whenever my brother tries to help out."
Here's another direct quote: " My hubby just went to bed after a very long conversation about how things have been with me and how he feels. For a very long time, I kept everything to myself (about 4-5) years ago and it drove a wedge in our marriage. It was very bad for about a year period where we were like roommates and then culminated in us almost getting divorced. We went thru counseling and learned how to talk with each other. My health right now is horrible, just got a nice ride in an ambulance today, and to be honest we are closer than ever. I let him into my world and no longer hide the pain, sorrow or fear that I have; physical or mental. He does the same and it has brought us closer. Our kids are 7 & 8 and for a long time I was able to "hide" my lupus but then my GI issues got out of control and we had to address how sick I truly was. It is tough to hide the fact that I only weigh 20 lbs more than my 7 year old. They have been thru so much this spring but they see a counselor which helps them and we are trying not to hide things from them but keep things age appropriate. They see me "feed", they see my tube and watch me give myself meds but they don't see what the actual "hole" looks like. When they "sense" that I don't feel good they will ask what my number is on the pain scale and that is how they know how I feel that day. I don't want them to live in fear so they don't know how seriously ill I truly am but they do know I am sick."
[I should note; I usually don't do direct quotes, but because of the nature of this post, I find it to be of utmost importance to be accurate. These are also poignant.]
For the most part, the husbands and wives are more than supportive by caring for and attending the needed appointments and hospital stays. Most of the children are in grade school and understand only on their level of understanding.
Some of the parents of the members are supportive yet some are very distant or out of the picture. This relates to the above mentioned, "But You Don't Look Sick" theory. It's so unfortunate that people are still uneducated and can't get over the "bump in the road" of not understanding what this disease is all about.
As for me? Well, I have two adult daughters who totally understand my condition. They both live in another state but are emotionally supportive and understand my condition. I also have two young boys who do understand that mommy is sick. My 4 year old has been to numerous doctor appointments, lab appointments, and hospital appointments with me. Both of my boys know mommy is sick and has lupus. The boys also understand mommy gets migraines all the time. I think it's extremely important to educate your children, when they can understand, how you feel and what's going on.
My husband is MORE than supportive. He's my rock! When I have doctor appointments, when I have to go to the hospital, have my Benlysta Infusions, or whatever I need, he will tele-commute (work from home) and care for the boys. He will also drive them to school and pick them up. When I'm sick he will stay and take care of me. I love him! He's great!
My mom is a wonderful supporter of me! She also has a few autoimmune diseases, but not lupus. But, she supports me like there's no tomorrow! My dad doesn't say too much. I'm not sure if it's the "unknown" that scares him or if it's the "known"? It's kind of a thing that we just don't talk about it. Avoidance I guess.
I have two brothers. One 11 months older than me and one 14 years younger than me. My older brother lives out of state and my younger brother is in Kabul, Afghanistan. The are both supportive.
My in-laws are all supportive too. I honestly couldn't ask for a better support system. I believe a great support system along with a positive attitude is extremely important when you have a chronic lifelong disease. Those two previous things won't cure you, but it will take you a long way~
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