Sunday, July 24, 2011

The Way We Were....

Due to events that have been happening to the members of my support group and in my own family, I find myself contemplating why it is that our parents and other family members have such a hard time accepting our Fibro/CFS and the fact that there is no miracle cure that will return us to normal.

They express their concern to us on a regular basis... telling us that if we eat better, take supplements, or just get up and move that we will feel better. The gut reaction for most of us is to put up large and rather thick walls, because this advice just makes us feel like our family members just "don't get it."

I think it boils down to something extremely simple... they just don't WANT us to be sick. They WANT us to be healthy, and having to face the fact that the child that they raised for so many years is doomed to spend the rest of their life in pain is extremely hard for them to take... so they grasp at straws, trying desperately to heal us but only driving us away. There is a strong desire within them to pretend that our illnesses do not exist, hoping that by ignoring the pain it will go away.

What are your thoughts on the matter?


  1. My fibro makes it so that I am EXTREMELY sensitive (on my skin) so I wear my PJs pretty much all day, everyday. Unless im going out (which isnt often) I dont see the need to get dressed and feel pain ect. My mom tells me that I need to get dressed. I need to do it for my husband and kids. Well what about me? IT HURTS ME! Finally after I cried and told her how much im sick of hearinf her say that and I frickin hurt shes stopped. Why do I need to get dressed for my hubby n kids? Will that imorove my pain,make my kids think im fashionable? I just dont get it. Its frustrating.

  2. I would have to agree completely, and believe there are two driving factors for this phenomenon.

    Parents wish the best for their children. They have fixed boo boos with a kiss (and sometimes a little first aid) since we've entered the world. A little scrape here and little cold there, the result is generally the same: "My kid was hurt and I fixed because that's what a parent does." Every parent wants to be prepared for the worse; however, they have no idea what to do or how to respond to a terminal illness or incurable disease.

    A second factor, and quite possibly a deeper seeded response, is the "realization" that they created (pardon the adjectives) faulty or defective children. As we all know, some illness are passed on by genetics and others not so much. Whatever the factor, the parent feels as though (s)he is to blame for the illness. If the disease is genetic, parents feel they are to blame for actually being faulty and passing faulty genes onto their child. If the illness is not genetic, some moms blame themselves for any and all of the things they did during pregnancy. Some even compare with their other pregnancies to see "what went wrong this time."

    From the moment of conception, our parents are our world. They are our superheroes: perfect in every way. With age we notice their powers deplete. Eventually, they become human, with typical human faults and inconsistencies, including deep seeded coping strategies. Any major loss in life can be accompanied with grieving; it is not limited to death.

    Today, we have tests to found out the likelihood our children will be different, some of which of ridiculously invasive. We fear and worry, and it's kept us alive for thousands of years. We want the best for our future generations, even if that means only slightly better. No one ever signs up for a sick kid. Some parents until the day they die, will admit that they feel it is still just a bad dream, wanting to wake from it. Hell, somedays even I wish I would wake from this terrible dream.

    I realize I do not have Fibro/CFS, but I am here to offer insight with experience of my own terminal illness, and provide support to my sister-in-law who I love dearly. To this day and every day, I wish she never got this terrible disease.

  3. This subject will and can be debated for centuries to come; mostly without a true explanation. Human nature is such that each one of us is unique with unique problems, situations and feelings. After having this disease (and yes in my mind it IS a disease)for 30+ years I have experienced many varied reactions from my family and friends. Mostly my family completely ignores my pain. If they ask how I am it's merely as conversation; they really don't want to know and that is because unless they have experienced any pain close to ours, they And, in some instances, even if they have experienced pain, they are so wrapped up in their own life, they can't deal with ours. When you take all this into account, what it boils down to is that as children, either grown or not, we expect our parents to comfort us, understand us and be there for us when we can't be there for ourselves. When they can't, we feel they have failed us. The important part of this whole post is to say this....ultimately WE are responsible for our happiness and well being. WE have to take charge of our lives, our treatment and our future if we are ever going to be happy. Just recently I made the decision once again, to be happy. I no longer care how my family feels about my health. I WILL be positive everyday and be the very best person I can. Amazingly, the day I made that decision, my pain got a little lighter.

    1. I can certainly understand that my children don't judge but my sister and parents do but that is okay that is just who they are, when I was younger i would turn myself inside out looking for approval from then but I came to realize that we were just very different and have different values I learned that I was okay the way I was and I like my values. I can love them with out loosing myself and understand that they just won't get it that is just who they are and how they are wired. Years of therapy did help me to figure out some of these things.

  4. I was diagnosed with Fibromyalgia about a year and a half ago. Since that time, I have been told multiple times that when someone is diagnosed with something like Fibromyalgia, they experience the five stages of grief. Denial, Anger, Bargaining, Depression and Acceptance. At first I found the idea confusing but now as I reflect back over the last year and a half since my diagnosis (@Maggie: I know that time is absolutely nothing in comparison to your 30+ years of suffering... My heart goes out to you) I can completely understand how the concept applies as I have recognized some of the stages in myself. I have also seen some of my close family members go through a few of the grief stages as well, so perhaps that is why they take it as hard as they do. Additionally, my mom always tells me how a parent would never want their child to have to endure such pain and how she wishes she could take the pain away. Accepting that she can't is difficult, but I try to remind her that her support and sensitivity to it helps.

  5. For some that may be true in my case my family has always been judgmental and I never really fit into their mold, but that is okay I think in their own way they due love me. I just don't hold my breath anymore hoping that they will get it or try to educate them on the subject I love them too and I accept them the way they are when they ask how I am I have to be vague or I open myself up to be hurt, I sometime feel bad that my relationship with them is somewhat superficial but I am lucky that I have a couple of really good friends that get it, and I have wonderful health care providers that listen to me and treat me with respect, that is so important when dealing with a chronic illness i hope New Hampshire Medicaid doesn't mess that up for me they are planning on contracting out to Managed Care insurance companies and that may start in July 2012. My healthcare providers are a lifeline and it is so important to feel heard, feel respected and have trust in a providers liabilities and in their knowledge of our illness. For today I will feel grateful because I can't change what is happening with my insurance and maybe I will still be able to see the same providers after the change, I have had the same PCP for about seventeen years she is great, and she knows when she needs to referrer me to someone else for specific things.