I remember the day I found out about autoimmunity. I was
still a teen and went by myself to the doctor's office - a new one that
was closer to my home - because my hands were blue and cold and numb. I
walked out with a hole in my arm from a blood draw and my head spinning
with precious little information and many questions.
When I got home nobody asked me about my appointment, so I just told my parents that they had taken some blood to check for some 'disease' called Lupus. I told them the doctor said it was a fairly rare disease and my chances of having it were small, so I wasn't too worried, but looked forward to getting the results in so I could go on about my life.
When I later found out I actually did have Lupus, I called my mom to tell her. I don't remember exactly what was said, but it was obvious that nobody really understood what
was going on. In all fairness, that included me! As far as the family
was concerned, I had bad circulation, as had my aunt and some other
family members from way back. They had lived and gone about their lives
just fine. I'd had circulation and temperature regulation problems from
early childhood, so obviously be just fine too. In their minds, I had
'inherited it' therefore it was 'normal' .
I didn't talk much about my autoimmunity for many years after that. It depressed me that any time it was mentioned, all eyes glazed over and the subject was changed. Not because I was interested in making a big deal about it, but really, I just wanted them to understand what was happening to me.
I learned early on to not try to explain autoimmunity to anyone. Even hubs had a hard time grasping what I was saying. It sounded crazy - my body was attacking itself??! Whoever heard of such a thing?! Hubs figured he didn't have to understand it so long as I did. He was there to support me however he could and did try very hard. Because he didn't understand the disease, my home life was always a bit of a challenge tho. He tried to "help" and made schedules for me so I could get everything in the house done while caring for the kids. The first question out of his mouth when he came home was uttered entirely innocently - "So, what did YOU get done today?" *headdesk*
Because my family didn't understand, I tended to close myself off and not discuss things. It was just easier that way. I have often wondered if my life would have been very different had I tried harder to explain things to them. There was a lot of dysfunction when I was younger because I would fall asleep at improper times, or was in pain or couldn't manage the energy to do all the things I needed or wanted to do. Some days I felt good, and acted normally, which made things even worse. After all, from their perspective, why would they need to expect things differently from me today when I was able to do what they wanted the day before? In their mind I had become lazy. At one point not too very long ago, my mom sat with me and my kids in the car and told me what a waste my life had been. *Ouch* She still doesn't get it.
In retrospect, I wish I would have been more proactive where this is concerned. I suffered for a long time alone, and in silence because I didn't do that. Back then there was no internet - no way to go online and get good information or support - no communities or places to go to help. Things were very different then. I suppose that is one reason I am so passionate now about being sure that patients get the education and support that will change their lives. So that their lives don't have to be a lonely struggle.
I began a discussion in the Autoimmune Diseases group that addresses telling your family about your autoimmunity. I hope a few readers might go and check it out and add their own thoughts. How did you tell your family about your autoimmunity? How did they react? Did you choose not to tell them? Why? If you had it to do over again, would you do it the same way? What do you see in your autoimmune communities? Do you think it is different from one autoimmune disease to the next?
I think this is a difficult subject at the very least. What I would really love to do is to create an introductory letter to the family of autoimmune patients to help them understand the disease and what to expect from autoimmune patients. Would you like to help me try to create it?
When I got home nobody asked me about my appointment, so I just told my parents that they had taken some blood to check for some 'disease' called Lupus. I told them the doctor said it was a fairly rare disease and my chances of having it were small, so I wasn't too worried, but looked forward to getting the results in so I could go on about my life.
When I later found out I actually did have Lupus, I called my mom to tell her. I don't remember exactly what was said, but it was obvious that nobody really understood what
was going on. In all fairness, that included me! As far as the family
was concerned, I had bad circulation, as had my aunt and some other
family members from way back. They had lived and gone about their lives
just fine. I'd had circulation and temperature regulation problems from
early childhood, so obviously be just fine too. In their minds, I had
'inherited it' therefore it was 'normal' .
I didn't talk much about my autoimmunity for many years after that. It depressed me that any time it was mentioned, all eyes glazed over and the subject was changed. Not because I was interested in making a big deal about it, but really, I just wanted them to understand what was happening to me.
I learned early on to not try to explain autoimmunity to anyone. Even hubs had a hard time grasping what I was saying. It sounded crazy - my body was attacking itself??! Whoever heard of such a thing?! Hubs figured he didn't have to understand it so long as I did. He was there to support me however he could and did try very hard. Because he didn't understand the disease, my home life was always a bit of a challenge tho. He tried to "help" and made schedules for me so I could get everything in the house done while caring for the kids. The first question out of his mouth when he came home was uttered entirely innocently - "So, what did YOU get done today?" *headdesk*
Because my family didn't understand, I tended to close myself off and not discuss things. It was just easier that way. I have often wondered if my life would have been very different had I tried harder to explain things to them. There was a lot of dysfunction when I was younger because I would fall asleep at improper times, or was in pain or couldn't manage the energy to do all the things I needed or wanted to do. Some days I felt good, and acted normally, which made things even worse. After all, from their perspective, why would they need to expect things differently from me today when I was able to do what they wanted the day before? In their mind I had become lazy. At one point not too very long ago, my mom sat with me and my kids in the car and told me what a waste my life had been. *Ouch* She still doesn't get it.
In retrospect, I wish I would have been more proactive where this is concerned. I suffered for a long time alone, and in silence because I didn't do that. Back then there was no internet - no way to go online and get good information or support - no communities or places to go to help. Things were very different then. I suppose that is one reason I am so passionate now about being sure that patients get the education and support that will change their lives. So that their lives don't have to be a lonely struggle.
I began a discussion in the Autoimmune Diseases group that addresses telling your family about your autoimmunity. I hope a few readers might go and check it out and add their own thoughts. How did you tell your family about your autoimmunity? How did they react? Did you choose not to tell them? Why? If you had it to do over again, would you do it the same way? What do you see in your autoimmune communities? Do you think it is different from one autoimmune disease to the next?
I think this is a difficult subject at the very least. What I would really love to do is to create an introductory letter to the family of autoimmune patients to help them understand the disease and what to expect from autoimmune patients. Would you like to help me try to create it?
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Comment by Spurtler on September 2, 2010 at 5:38pm -
Ellen mentions many instances where she combats lack of awareness, ignorance, urban myth and that, to accommodate these issues she kept her condition to herself. I feel that, especially with regard to Autoimmune disease it is still not widely understood and can and is confused with AIDS. Do we know anything of the history of discovery of autoimmune disorders? Do we know why it is not treated as a disease but as a disease category within a system specialty like neuro, gastic, RA?
Maybe if we knew more about how health providers view these diseases we might be able to discover why there is a lack of understanding in the community. I think it is a worthy, if not a very sick goal, to raise societal awareness of AI disorder to the same as heart disease, cancer and diabetes. If we did that others might not have to travel the same painful path as Ellen.
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