Help beyond support groups.

Have your emotions been overwhelming to you?  Do you have less control over them than before you became ill? Do you feel like you are on a roller coaster ride most days?  Pain. Fatigue. Sleeplessness. Headaches. Isolation. Life with lupus can  be one of  ups and down’s. Dealing with an autoimmune disease can take its toll on one’s emotions.

I went through a disheartening period when my word retrieval was bad and my memory was giving me fits.  I would ask the rheumatologist about it periodically until one day we decided it was time to get it checked out.  My first stop was to see a neurologist. From there I was sent for a costly MRI that looked fine.  My last stop was to a neuropsychologist for a lengthy assessment.

The doctor had several insightful observations to share with me about myself.  In the end, some of the best advice he gave me was to “try not to make too much of it.”   I left the office determined to stop explaining my blunders to people and stop getting upset over the problem.

Why did I even bother to get this problem checked out?  It was very distressing to me.  I could not find any answers.  I was tired of being laughed at, questioned and feeling stupid.  I did not want to be around people some days.   It is humbling when you cannot effectively communicate because you can not recall the details of things you know, or you say the wrong words.

You may find yourself in a situation you feel helpless to change. There is help available. Dr. Phillips, in his book Coping with Lupus, says there are a number of medications available that can be effective in dealing with things like anxiety, depression, and anger, etc.  He says there are mood elevators and antidepressants.  There are also people who can help.  Psychologists, psychiatrists, counselors, social workers, pastors and other professionals are available.  Your doctor or local lupus chapter could recommend someone.  No one has to walk alone.  But, you do have to be proactive on your own behalf.

Would I have done all the testing over again?  Yes.  I gained valuable insight into myself, some reassurance about my condition, and a strategy that has helped me do life.  Did I get all the answers I wanted? Unfortunately, no.  Did I stick with my decision not to explain things to people? Yes and no.  What other valuable lessons did I learn?  I had to use more effective coping strategies in my life, exactly what we will begin to discuss next time.

If you are on a roller coaster, don’t you think it is time to get off?  There is nothing wrong with reaching out for help.  It is easy to forget there are people out there trained for this very reason.  I hope this has helped you. Until next time, I pray God will strengthen you, encourage you, and supply someone to meet a special need that you might have, whether emotional, physical or spiritual.  If you enjoy reading this blog, click here to  Subscribe by Email . You will  receive it directly in your inbox and  not miss a post.

Many Blessings to you and those you love, Leslie Rose K

The greatest discovery of my generation is that a human being can alter his life by altering his attitude. -William James


4 responses to this post.

  1. Wonderful post Leslie! I too go through the same emotions and having problems with retrieving words, etc…My way of dealing with it was to make a job about it and tell people that I’m not playing with a full deck anymore. Only it really wasn’t funny to me at all. Now I just tell people that I’m sorry, but I have problems with my memory. Mine is from the Lupus and a blockage that I have in my brain. I had the MRI done with and without the dye. Mine showed that yes, there were the Lupus spots along with the artery that has a blockage in it. So I got answers to what was causing my “dumbness”, but not what to do about it. So I continue to get frustrated to a point, but then try to let it go because getting frustrated about it only seems to make me worse. I can’t change the way people might think of me, I can only explain the reason why. So I have learned to live with it the best I can and most people understand and those who don’t doesn’t really matter to me. Thanks for another great post my friend!!


    • Thanks for sharing your story with us Brenda. It can be challenging but it sounds like you are overcoming the challenge the best you can. As you said, all we can do is try to educate people. When I try to, I feel like they look at me like I am a little over the edge. I wish I felt that they believed me. You have the best attitude in response to that. Thanks again for sharing.


  2. You’re so right! We are not alone! I still get frustrated by my mental lapses and I don’t explain myself either! Sometimes I’d rather not be around people.. but I try to laugh it out.. it’s my favorite way to cope in the midst of (trying to) put one foot in front of the other. Though I don’t have Lupus I have Cerebral Ataxia..


    • At this age (53) I am seeing healthy people make some of these mistakes so I do not feel so bad. When I was in my forties it was a different story. I think your strategy to laugh about it is a good one but not my strong area. Thanks for sharing.


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