Tuesday, May 19, 2015

The Month of May is Lyme Disease Awareness Month

May is officially Lyme Disease Awareness month. Most of you know that this is a disease close to my heart, as I have it and so do both of my girls, having acquired it from me in utero. It is a very real part of my life, more so than I would like.

I recently had a conversation with a dear friend of mine.  We were talking  about our upcoming 50th high school reunion.  I told her that I would feel funny going, as I have few memories from high school. She replied that that is true for all of us and yet she can remember names and details and to this day she still gets upset regarding some of the events that happened fifty years ago. I laughed and told her that perhaps that is the good part about having memory issues, I carry few grudges or upsets as I can't remember them!

Perhaps not remembering is a gift? It is one that I am not making up or exaggerating!  When I had a stroke a few years ago now, it was noted on CT scans that I have many brain lesions, and in my rehab that followed, my therapists' instruction taught me little that was new.  My brain issues, I realized are part of Chronic Lyme Disease and are long standing.

The conversation with my friend was not as amicable as either of us would have liked and I apparently upset her as much as she upset me. I have since examined why our interchange went south. I would like to think that it was due to a full moon, but it was more than that. Though we have "made peace" and are working to not let our differences come between us, I needed to understand what she was trying to say and my reaction to it.

I process slowly and giving more thought to our conflict,  I appreciated that those of us with Lyme or other invisible diseases face difficulties in our day to day interactions with the world at large more than we care to admit.  Just this last week a friend of mine who also suffers with multiple disabilities called to talk to me about what happened to her at a dog show.  She had traveled by herself to take her dog to an international show states away, despite some very real issues with fatigue as well as double vision. She and her dog did well at the show, but she found herself the subject of criticism by someone she knew there, who didn't understand the limits of her health issues.

Similarly, my friend verbalized criticisms of me, though with good intentions of helping me .  She told me that it hurts her when I put myself down. She doesn't realize that in the years since we have actually seen each other, I have developed a rather dark, self-deprecating sense of humor. It is a defense mechanism that I have perfected, joking about myself and beating others to poking fun at my idiosyncrasies that are often the subject of much ridicule! Laughing about the failings of my body and mind is my way of coping. Illness and disability leave little pride and humor helps.

My friend was also concerned that I am allowing Lyme Disease to victimize me and told me that I am more than my disease! It is a point well-taken, though there is a secret society of those with similar diseases to mine. We start clumping together to support each other, and my disease is truly part of my new identity, right, wrong, good or bad.

My friend also expressed that I am allowing my illness to rob me of my fun side, that she knew years ago. Her comment stung, though I quickly defended myself with what she claims was quite a filibuster . I told her that I am proud to be who I am and continue to "fight like a trooper" despite a disease that has taken so much from me for 49 years of my 67 years. I have indeed been victimized by Lyme Disease! It has prematurely sucked up much of my life, and likely some of my fun side with it!

My friend wanted me to understand that most everyone has illness and disease that they must cope with.  It is true that I am not the only one, and her comment is well-heeded. She is right that many work with pain and discomfort, besides which, my issues seem to never end, and are tedious at best for my loved ones that struggle to be patient with my complaints. Well-fought acute illnesses are a different matter than chronic debilitating ones that wear out even the most tenacious of supporters.

My friend continued to try to explain to me that others have cancer and arthritis and diabetes that causes them to suffer too and yet they carry on and don't complain.  She doesn't understand that with Chronic Lyme and other invisible inflammatory/autoimmune illnesses we are often misunderstood by those closest to us and are commonly misdiagnosed by our doctors who label us as having psychiatric illnesses or as being hypochondriacs, denying us the dignity of even having a legitimate physical illness with a diagnosis that is recognized and treated in the medical world.

Interestingly, insurance companies aren't like the rest of the public. They don't deny what we can't either.  Their actuary tables show our illnesses as cause for some of the severest of disabilities and even if we cope well, our insurance rates are increased as the depression and suicide rates that accompany living with the frustration of no relief, can be as devastating as our illness, especially when we are denied proper medical care and insurance coverage!

My friend said it hurts her when I talk about things that I cannot do, for it makes her feel that I am "giving up" and it is painful for her to see what I was and what I am becoming. I reminded her that my phone call was for the purpose of sharing my excitement about making a quilt for her and a wall-hanging for another mutual friend, but she then tells me that she is weary of my "spirit of overcoming", as it focuses again on my illness.

She complimented me that I am accomplished beyond what others do, even when they are well. She does not see that my accomplishments are my ways to compensate for what I cannot do and to stay useful and relevant. Gaining disability status indeed felt like I was giving up, though I didn't stop working until I was sixty-two.  It was a two year fight to get it and when it was awarded, it felt much like winning Queen for a Day where hardship gets the prize of a wheel chair or a handicap ramp--needed but not wanted! I wanted to work instead to help support our family. My physical limitations forced me to retire early and my husband to work a second job to meet our financial needs. Sadly, my extreme efforts to work with my disease were not recognized and/or accommodated in the work place. Ironically, I needed to be healthy to work in the health profession!

People with serious illness, like me, become less than what we were, and we content ourselves with diminished roles. We often do so gratefully, happy that we can still function at all, despite the oppression of a disease that doesn't seem to ever go away.

My friend told me that she doesn't mean to hurt my feelings, but I felt wounded by her comments. She said that she has medical problems too, but then added that they can't compete with mine. I have no wish to compete with anyone and especially not in the category of being ill!

My filibuster wasn't about whining, but rather,voicing my anger at what is not understood. Lyme Disease and other invisible illness are largely unsupported and un-researched though they are ruining the lives of so many!! I fight with my voice and my pen for the equal rights and dignity that are given to others who have "politically correct" diseases.  I am more than sympathetic to anyone who suffers, but it seems that many like myself are negatively judged when we aren't pridefully silent!

I am responding, not just to my friend but to the world. Her words wouldn't hurt so much if there wasn't truth in what she says.  I am NOT what I used to be and I grieve that! I wish I could go to my high school reunion, but travel exacerbates my illness and it is all I can do to cope with my health issues when I live within the boundaries of my home. Losses? Everyone experiences loss in their lives, but those with Chronic Lyme or other chronic debilitating diseases find their lives interrupted when they are in their prime and many of us dedicate our lives to fighting our illness as well as calling attention to the diseases that cause them as a way of advertising for the research that is needed to eliminate them .

I am not a poster woman for Chronic Lyme Disease! I don't pose for pictures.  In fact, I often want to wear a bag over my head. Rashes, thin hair, and dark circles under my eyes make me look sick even on my best of days, and I whine too much!  My personal story is not so sweet...but it is a real one...and an honest one!  I don't suffer in silence and I bless those that are voicing loud and clear their struggles with this and other diseases dismissed by the medical world!  It is NOT OK to quietly accept our diseases any more than it was OK to accept polio!

I am but one of thousands of people whose life has been turned upside down by an illness whose cure is as elusive as chasing rainbows. In all losses there are gains and my personality and humor have moved to different domains. My friend is right, it isn't fun to see someone you love suffer, but my family and I have gained much compassion for others who are suffering like me/us! I told my friend that what doesn't speak to her in my writings speaks to many others who struggle as I do. Supporting and caring about each other, we gain wholeness, at least spiritually.

My filibuster ended with telling my friend that I love her and don't mean to offend her and the same goes for my readers. I am a total person and will continue to write about issues dear to me, including Chronic Lyme Disease. I love my friend and will continue to, whether or not we agree on this subject, and the same goes for my followers that may not wish to read about this aspect of my life.

I write about Chronic Lyme Disease as it is a way of standing up for myself and all of those that suffer as I do with this and/or other invisible, debilitating illnesses not currently recognized by the medical community. This is Lyme Disease Awareness month and I pray that people everywhere will recognize and support the research needed to guarantee appropriate medical treatment and insurance benefits to those who suffer from Chronic Lyme or any other such invisible catastrophic diseases!

*Please support  ILADS (International Lyme and Associated Diseases Society) as it supports research and doctor education to create what we who have this disease refer to as Lyme-Literate doctors (LLMDs). Both are desperately needed in our fight against this illness!