I have decided the entry of the word psychosomatic into common parlance is a real curse for those with autoimmune disease. Having heard the word so many times, it's hard for me not to get really angry with people. I try to better explain Sjogren's to them, but it really gets me nowhere most of the time.
I need a quick and witty response prepared for the next time someone asks if my symptoms are psychosomatic so I can make them feel as bad for asking, as I do for hearing it. Would I be on medicines that lower my immunity for a psychosomatic condition? Unfortunately, I feel like I have to prove how sick I have been when someone asks me this question.
My most recent encounter was particularly hurtful because it was a friend whom I thought was understanding about my health. I wasn't feeling well, but really wanted to see her nonetheless; and it was a mistake. It always is. I have noticed when I don't feel well it is much better to cancel plans, but sometimes I still push myself. Even with many of my friends, I have found that I have to be "on" to deal with them and feeling sick and fatigued makes it harder to do that.
As I wrote about in a post on the complexities of Social Life and Autoimmune Disease, everyone wants to hear that their friend is doing better. When someone like many of those with autoimmune diseases, doesn't get "obviously" sick and then feels better or worse without a visible physical manifestation or a clear end point to their condition, it goes against what we expect. But that is still no excuse for anyone to minimize these very serious illnesses.
I am sad that this conversation happened because I am not sure that I will be able to move past it. Because asking me if my symptoms are psychosomatic is probably one of the worst things you can say to me. And just because you took college psychology or were in therapy for a year does not mean you know anything about my medical condition.
It still shocks me how few people know about autoimmune diseases given that estimates are that 50 million Americans are affected by them. It is clear that those of us with these diseases have to become the educators. It is hard being sick and then on top of that feeling like you have to prove it to others. Maybe my response next time will be that I wish my condition were psychosomatic, but unfortunately it is a serious illness that has already attacked my glands, nerves, and lungs just to name a few.
Have you encountered these tough and uncomfortable situations and how did you handle them?
Do you have any particularly good responses to those who doubt your illness?
I'm sorry for you. I'm sorry that you have to live a bad situation.
ReplyDeleteI had not yet live this problem. But maybe it will happen one day.
One of my friend try to search for inf on Sjogren, maybe she was thinking to help me, to understand better, but all she find was that Sjogren was "dry eyes and dry month". And after that she thinks that the illness was not soo bad. It was hard to convince her that it was not so easy.
That is such a good point about when people try to research Sjogren's and all they come up with is dry eye and dry mouth when there are so many more symptoms and complications of the disease. I wish that we didn't have to convince people about our illness.
ReplyDeleteThat really sucks. I always get worried about my girlfriend who has an autoimmune disease as she is often sick. People often dont understand why she is sick as well. Recently she was ill and an acquittance proceeded to basically publicly (among her group) shame her because she was unable to eat certain types of foods as they always trigger ill reactions.
ReplyDeleteYour girlfriend is so lucky to have you and your support. And I am so sorry to hear how her friends treated her. It is unacceptable.
DeleteIt seems hard for some people to grasp that those of us with autoimmune disease have a multitude of limitations and health problems with which we have to contend. I too have problems with allergic reactions and food and this is another area where not everyone is the most understanding. It is important to try to teach friends and family about autoimmune disease, but they have to want to listen and to understand. I do feel particularly grateful to those people in my life who have been understanding and compassionate about my illness.
My reply to nurses & others in the mefical profession as well as lay people - If I knew the cause I would be a multi billionaire.
ReplyDeleteI just this evening had a very hurtful discussion with my husband. He emphatically insists that my Sjogren's, Lupus overlap, etc. could easily be cured, if I changed my diet and went to therapy. That the responsibility for being so sick the last 8 years rests squarely on my shoulders. That the pain and suffering I have endured and trauma it has caused our family are of my own doing. That I should just stop all my medication.
ReplyDeleteI feel very alone.
Oh Rose I am so sorry. You are not alone. You have the voice of so many people who are severely sick and know exactly what you are dealing with on a daily basis. I am sorry for your husband's lack of empathy and understanding of your very real disease. God sees your struggle and knows what it takes to wake up and be you everyday. I said a prayer for you.
DeleteOh Rose I am so sorry. You are not alone. You have the voice of so many people who are severely sick and know exactly what you are dealing with on a daily basis. I am sorry for your husband's lack of empathy and understanding of your very real disease. God sees your struggle and knows what it takes to wake up and be you everyday. I said a prayer for you.
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