Sherri's Story

Part 2

"The Battle for Understanding:

How and Why IDA Began"

 Copyright © 2005

The Invisible Disabilities Advocate

www.MyIDA.org

After years of battling this illness, I have found that the mourning of losses of dreams, goals and life plans is often done alone; without the shoulder of friends and often even family. I believe this is a tragedy among tragedies! In a time when a person needs support the most, loved ones are running, avoiding, blaming and denying reality!

For many reasons, our friends and family often tend to stay in denial about illness; somehow, they think if they do not acknowledge it, then they will not have to deal with it. However, how can they be compassionate about a situation until they acknowledge that the situation exists? And, why do they insist on treating the person like they are to blame for the disease, because they need to be more positive or motivated to cure their disease?

Think about it, if I told someone I broke my leg and could not go skiing this weekend, would they say, "oh come on, you can go, just be tough!" Or if my arm was being eaten away by gangrene, would they say, "oh, you just need to think positive." Or, if a child swallowed a deadly poison, would they say, "nah, don't call the hospital, you are just being overly sensitive." So, why would they disbelieve me when I tell them I have a disease, act like I lack motivation and treat me like I just need a better attitude to cure it?

I have learned that if all of those who cared about us would rally around us to say, "we are sorry for your losses and we mourn with you," we would have the strength and desire to fight even more, because we would not be wasting all of our energy trying to explain things over and over, defending our position and yearning for their belief in us; and, in the meantime, we would feel loved just as we are and find new goals and dreams which are reachable with our uninvited limitations.

Unfortunately, some diseases and disorders do not yet have treatments or cures that work on every person; so, they are left with a body that will not cooperate with their desires! They are not giving up, they are doing all they can, because nobody wants to live with limitations! In my case, I should have died 5 years ago, but because I fought, persisted and made huge changes in nutrition and supplements, I am alive today. No, I am not any better, but I am alive! I would like to appreciate this, but most people will not let me when all they see is that I must be weak, because I am not better! Doesn't still being alive count for anything?

In all of my experiences with debilitating illness, I have watched myself and others struggle with career losses, insensitivity of family, loss of being able to have children, loss of friends, seeing dozens of doctors, incurring tons of medical bills, trips to the emergency room, surgeries, countless disappointments, endless frustrations, bottled up anger, unavoidable depression and tragic lack of support. 

Through the years of being disabled, on occasion I would write down my experiences with illness and disability in my journal, as therapy. When I first noticed my friends falling away, because they did not understand what I was going through, I wrote a letter about what it was like to have MS. I had the hope that after reading it, they would have a better comprehension of what I was feeling and going through. 

Writing in my journal has been rewarding, yet frustrating and painful because of the cognitive impairments, pain and fatigue from the MS. When I was well, it was nothing for me to write a 10-15 page report in a day or two. Now it often takes me years to write just a few pages, because of this debilitating illness, unbearable fatigue, unbelievable pain and incredible cognitive difficulties. I often forget what I am writing before I can even finish a sentence. I get confused and cannot remember what I wrote and the struggle for words is a tremendous challenge. My brain is truly full of cement and locked up, as I usually can barely even remember my name and have great difficulty speaking. 

My husband, Wayne, wanted to put some of my thoughts from my journal on the web. He thought it would be a good way to help our friends and family understand my condition. Surprisingly, there were many others who were going through some of the same struggles, frustrations and losses. There are so many people out there battling serious illness, which has robbed them of their goals in life; but even worse, their spouses, parents, siblings and friends who do not understand and refuse to love them with the disease! It is appalling and shocking how someone can suffer from an unwanted illness, lose control of their bodies, lose the ability to chase after their dream and be treated as if they are "choosing" to be ill!

Later, Wayne had some of the journal printed into a booklet format in hopes of helping others feeling the same way and going through the same struggles. This gave those with chronic conditions a tool to help their loved ones understand and the format made it easy for them to hand out. He made it available without profit.

We have been amazed at the response we have gotten from sufferers, thanking us for "putting into words what they are feeling and thinking," in hopes that their families will gain a new understanding and respect for them after reading from the journal. And, we have even gotten comments from "well" people saying my words were a "reality check" for the way they have been treating their ill loved ones.

I, again, praise God and give Him all of the glory for urging us to pursue this outreach! I am thankful that what we have shared has brought comfort to many suffering hearts, by putting our thoughts, frustrations and concerns on paper. I hope and pray that friends and family everywhere will learn to listen, love and become a source of support, instead a source of opposition, after reading these excerpts!

Compiled From the Journal of Sherri Connell

Copyright © 2005 The Invisible Disabilities Advocate

www.MyIDA.org